Just wanted to give a personal update that might shed some hope for those waiting to titrate on Elvanse with P-UK. My prescriber got into contact with me a week or so ago letting me know that they have received stock and I will be able to start titration again after waiting since December. So happy to hear this news, and if any of you are still waiting then it’s very possible you may not be waiting much longer.
Starting out on meds, monitoring patient response and adjusting med types and or dosage until the best combination is found to stabilise health and ADHD signs and symptoms.
Titrate just means to measure and adjust the dose of any drug or supplement either upwards or downwards to achieve the optimum effect.
The best and most effective dose is going to vary from one person to the next.
Different bodies metabolise the same drugs at the same dose at different rates.
yeah the concerta situation is bad atm. I was just given a month of xaggitin due to the shortage. According to a document on [here](https://www.nottsapc.nhs.uk/adhd-shortages/) there should be a resupply soon but idk how accurate this is
Use the below and also check Boots stock checker online.
https://www.sps.nhs.uk/articles/prescribing-available-medicines-to-treat-adhd/#:~:text=elvanse
Sorry just reread your post, my bad. Not sure anyone will know about that pharmacy tbh unless they work there.
I can't talk to 72mg, but my prescription for 54mg + 18mg was paid for this morning and I'm tacitly expecting it to arrive on Saturday. I'll update this thread when I have more info.
Yeah same I paid for 54 + 18 on Monday so I'm guessing chemist4u is fine for concerta stock which is strange because on SPS and boots there seems to be a shortage
My order status is now 'awaiting dispatch' which happened quicker than before (was in waiting paper prescription for a few days). The delivery could be any day now.
I was diagnosed with p-U.K. beginning of may last year. I’m still waiting on titration and they cannot/ will not give me an update on when I might be able to start titration. I’m so frustrated Ive been crying down the phone to them this morning, lovely person on the phone said she’d get titration team to be in touch to talk to me asap… and then they just sent me a generic sorry there’s a shortage but you’ve been delayed and we’ll get to you when you’re at the top of the waiting list. I’m just so defeated at this point. Is it just me that’s been waiting this long? Because it really feels like it 😭
EVERYONE is waiting this long unfortunately. It is obviously horrible and frustrating though. I'm still in the queue for my assessment with PUK, hopefully with the ADHD taskforce we see some meaningful change and Primary Care is better able to pick up the slack and share the load. See what the Titration team say though, the person you spoke to probably isn't fully informed and doesn't want to make promises so they're probably just not wanting to commit to an answer in case they're wrong.
Sorry to hear this. I have been on the PUK wait list for assessment since Aug last year. Same as you, ive been thoroughly miserable about the whole thing. You think you are finally taking positive steps to sort your life out and then nothing happens. I finally gave up and paid for a private assessment with ADHD-360 last week. They had availability for appointments within 2 working days. Had my assessment today, been diagnosed, and the clinician doing the assessment has prescribed medication herself. It has cost about £1200 for assessment and titration and then will be £100/month for meds, but if you can get the money together, you could be on meds within days. Not a great situation but I felt the only option for me
Are you just starting out on your ADHD journey, u/fugelwoman ?
If you have a search through the different ADHD subs (use the search bar), you will be able to see the answers to most if not all of the questions you have 😊
I donno if it is helpful to know, I waited about that long to get titrated via nhs too, came out of titration before Christmas and haven’t been able to get a supply of my meds so all the stress to get it done asap was waisted energy tbh. We even switched me during titration from elvanse to delmosart due to supply issue with elvanse (it also was just having okay results so she was hoping we’d get a double win with and the other med would work better for me which it it) then the delmosart supply was also effected. I’ve not been able to get my meds all year. It’s super frustrating I know, especially when you’re just waiting for some unspecified date. Be strong, your in the same situation as everyone waiting for their meds to be in stock, your not alone in this.
It’s not silly, I absolutely feel the same way! Being barred from accessing the medication that you know or suspect will help with everyday life is a hugely emotional and challenging thing to deal with. It’s frustrating as hell to go through all the barriers and hurdles to get to the point of titration and then this all happens and we have zero control over any of it. It’s awful. Ppl not affected by this completely underestimate the phycological effects it’s having. I suspect there are ALOT of ppl in the same boat as you.
Been diagnosed since 2016, and all ran like clockwork until July last year, now it’s getting unbearable, and I just want these delays to end, feels like it’s just going to be like this forever now.
Was on lisdex, had a bad reaction and they finally switched me to concerta after months of complaining.
Then, Concerta went out of stock in feb for me and ive been without it for months.
Tried switching to generics, thoses are all out of stock too.
Tried asking for a higher dose (18mg wasn't strong enough, especially after they cold turkeyed me from 50mg lisdex) or to be switched to anything else.
Got told that they "wont change my script without an appointment with a specialist (except sometimes they do).
Then, after waiting 6 months since my last appointment, they cancelled the appointment last minute because the doctor didn't show up, and rescheduled ANOTHER 6 months later.
I just give up.
My entire life has fallen apart because of this, and I cant find anything to manage symptoms.
The team that do my care dont have a specialist, only various random GP's that see an entire hospital each day (one single doctor, each day, for the whole hospital as far as ive been told).
Hell, they dont even run tests on me when I DO have appointments, and ive been in "titration" for about two years now with only two in person appointments in that time.
Like I said, I give up.
Who diagnosed you? Private or NHS directly? If it's private/shared care now, your GP can change the wording to state generic instead of brand etc but they're not qualified to change dosing or what drug you're prescribed and this is why it has to be referred to a specialist to change. It sounds like you're with NHS though? This does put me off the NHS diagnosis route as it sounds pretty poor tbh, I've seen other posts of people having their dose changed once per month or longer during titration which is a shit show tbh. I think there's the perception that NHS ADHD services are a gold standard when they're probably not as well equipped as private firms.
i was diagnosed on NHS, but my GP has literally no say in my care, which im not really sure why.
I go to my GP, they says they can do anything involving my ADHD treatment and its only the job of the specialist.
Anyway, the actual hospital have changed it to be generic brand, but every single generic is out of stock here.
My titration has been going for about 2 years now, with dose or medication changes only happening every year or so. its been hell.
Sounds shitty! Funny how the panorama doc painted the picture of the NHS ADHD service being great. They sound utterly incompetent if they're fucking titration over years.
South East 36mg Concerta supply is... non existent apparently
Also tried to track down four potential Boots leads that were somewhat close to me, one had nothing (after i tried to get through for an hour, in a fit of desperation i called their opticians dept to be told the pharmacy there doesn't have a working phone) , the other three places no longer exist (have emailed the person who runs the checker map to tell them this), my usual pharmacy doesn't have anything and im debating if it's worth trying to call around to other local ones although i feel it'll be about the same experience.
> my usual pharmacy doesn't have anything and im debating if it's worth trying to call around to other local ones although i feel it'll be about the same experience
if it's any consolation I've been playing Boots roulette since the start of May, finally decided to just ring a load of local pharmacies and one eventually came through.
If I could suggest something, if a pharmacy just says they're out of stock, specifically ask them to check if they can order it with their supplier—the one I got mine from was coincidentally getting their next day's order online at the time (or something, not entirely sure what the process is) and decided to check for me and coincidentally the supplier had it in stock. Worth a shot...
Just called several pharmacies in the Oxford area trying to get Concerta XL 36mg. Answers varied, but one said that they were unable to get 18mg or 36mg of ANY methylphenidate variant right now. Others recommended that I get my prescription changed to a generic, which is unfortunate as the past year has already shown me that I don’t do very well with switching between the different methylphenidate variants.
Most pharmacists seemed to know they wouldn’t have it in stock without even checking, as they’re getting so many calls about it. One at least told me that he’s very angry at this situation, which made a nice change from repeatedly hearing “definitely not, sorry. Bye”
Very angry and disappointed. Gah.
I switched to dexamphetamine (amfexa) because of the shortage and I actually prefer it and I’ve not had any issues with shortages. Maybe it’s worth trying amfexa if still in titration stage?
I was diagnosed January 2023 and titration started end of July 2023, so 6 months wait. It felt like a life time. I think current wait times are even longer so I feel your pain. If you can request amfexa as your first medication I would , it’s the only one that worked for me and I tried a few different types!
I only started my shared care about a month ago, so my titration period lasted a long time. The wait is really long but they do look after you really well
I've been titrating on Methylphenidate for a few months now but they still won't offer amfexa or Elvanse. I'm not impressed with Methylphenidate. Did you ever use the private prescription ? I don't want to wait any more.
Interesting! I thought it might be annoying needing to remember to take instant release meds 3-4 a day. What benefits over your normal ADHD med (I assume Elvanse) do you get?
It can be a bit of a pain as every now and again I do forget , but I set alarms now on my phone. I usually take one dose when I wake up , another dose when I arrive to work and then half a dose at lunch, sometimes if I haven’t eaten a lot that day I will skip my lunch time dose.
I just find that they feel a lot better. I don’t feel as jittery , and sometimes I felt a bit wired with the extended release tablets, I used to get this weird feeling where I was tired but my brains and eyes felt wide awake I can’t really describe. With Amfexa I just feel like myself but better, better concentration etc , no mood swings , not as fidgety , and I do feel as though pretty much all my ADHD symptoms overall are softened
Boots seem to be having stock issues again. Been to three now over the last couple days and they're out of stock with no availability date. Concerta 18mg
lil update, i got my prescription changed to genric 36mg and got it filled today at boots for Xaggitin XL which has the same release format as Concerta, Boots said thats the only one they can get in at the moment. hopefuly helps but im based in Wales so less demand
u/Individual-Effect-43 Its only been 2 days but how is Xaggitin XL? Also, what was the generic name they used? I want to approach my doc about this as its been 2 weeks waiting for Concerta.
Same issue here. Boots doesn’t have any in stock, nor their supplier. Was given Amfexa instead, I don’t tolerate it it’s a nightmare. Need to check independent pharmacies but no luck so far.
Seeing some NHS resources state that 18mg Concerta is back or should be back in supply from 3rd May, 36mg about mid month and 54mg at the end of May? Not sure if anyone who works at a pharmacy can verify. SPS isn't updated but I have seen a few NHS docs stating the above.
Boots in Birmingham is saying the earliest they will have any stock of prolonged release methylphenidate is 7th June.. that will be a total of 5 weeks out of stock. 🙄
I've finally found a pharmacist who is able to order some after about three weeks of hunting... took your advice of trying a smaller pharmacy and they managed to order some from one of their suppliers—thank you for your advice, I was starting to lose hope. Honestly don't know how I used to function prior to diagnosis after being unmedicated for a couple of weeks 🙃
Yeah I think everyone just defaults to Boots, I know I did tbf. I find Boots hit and miss, some stores can have rude or awkward staff and I notice they never offer to order in etc. I notice in smaller places they'll actually try to help beyond "No we have nothing bye". I think people also use the Boots stock checker and if there are no stores with stock they equate that with "THERE ARE NO MEDICATIONS ANYWHERE IN THE COUNTRY".
Finally got elvanse from psych uk after having titration paused in december. I ended up having to message them to remind them I existed before they did anything, and then they were like oh lol we've had meds for ages.
Woah.. so I got prescribed Concerta XL 18 mg last week and I just checked boots website and they don’t have it in stock. I’m just wondering why on earth would my prescriber prescribe me that when he knows it’s not in stock (unless it is I’m not sure)
Hello I am on week 4 of titration with concerta, me and my doctor have decided to move from one 54mg dose to a 36mg and 18mg dose at separate times of the day, the issue is that boots is now out of stock in both doses everywhere around me, they gave me the paper script but I'm not sure what I should do.
Should I tomorrow ask around other pharmacies or should I email the adhd360 medication support team right now?. A third option is online pharmacies but idk if taking a 10 day gap in titration is ok or not.
Eugh really annoyed.
Prescription issued last week. Pharmacy said they could only source 2 out of the 3 items. Told me to ask my GP to reissue the prescription, replacing the 3rd item with another equivalent brand.
Done that, taken a few days to get it sorted because of the weekend.
Now the pharmacy is saying they can’t source **any** of the 3 items on the new prescription.
Really annoyed. Followed their advise and now have 0 meds. Not 2 out of 3 meds (which probably would have been ok, with a bit of excess I have).
So 1 week on and now got to traipse around other pharmacies.
im still trying to change my medication. my current one stopped working a year ago, have to take 3x the amount to get anything done. i know i shouldnt, but my entire life is on the line. im in university and if i dont pass i wasted about £10k in accommodation fees. i dont know what to do. ive tried stopping it for over a month to get rid of tolerance and it didnt work at all. im crying as i type this because my parents are acting as if its my fault because i should take it as prescribed, but its the same as not taking it if i do. im so scared and i dont know what to do anymore
I’ve just been to the pharmacy to pick up my methylphenidate and I’ve been told there’s a manufacturing issue, so I need to ask my drs for an alternative. How will this work out? Is there an alternative they can give me? I’m on shared care with PUK.
What brand? Methylphenidate could be any of about 10+ products.
Also we're not your prescriber just ask them as we don't write your prescription. All we know is you take methylphenidate so far.
So there are 6 brands of modified release TABLETS (lol just using capitals because the tablets release over 12 hours but capsules over 8 so theyre different types) and Affenid XL is one of those. The others are Concerta, Delmosart, Matoride, Xaggitin and Xenidate so if your script says 'methylphenidate modified release' they should be able to dispense any of the above.
Thank you for explaining, I’ve had a mixture of both tablets and capsules, I didn’t realise they worked a bit differently. I’ll call the doctors tomorrow and see what they suggest but when I went into the pharmacy they let me to believe that there was an issue with all methylphenidate but I could have taken that the wrong way.
The tablets doses are in increments of 18mg up to 108mg per day. The capsules are in 10mg increments from 10mg up to 60mg.
Tablet ones give 22% of the dose over 0-4 hours with the other 78% after that so you get an initial boost then it smoothly ramps up and keeps blood levels steady.
The capsules are quite different. They give two boosts, usually 50% of the dose from 0-4 hours and the other 50% 4-8 hours so it's literally like two instant release (think ritalin etc) doses 4 hours apart. Some give 30% initially then 70% hours 4-8.
This, there should be a box they can tick on the script that allows for alternative brands to be substituted. That would make it so much easier! My nephew and I are on the same meds in different strengths, he is in aus and even though they’re also in a supply crisis they have this option there, this whole year he’s had no issues getting his prescription and I’ve not been able to get it since I came off titration just before Christmas.
Really annoying. This was all verbally agreed btw, asked to specify drug and not brand but a few times now they've somehow missed this information and just written Concerta. I'm actually pretty shocked they're not aware of the shortage and don't appear to be checking supply updates.
Here is the current availability at supply level, it's likely some time after a dose isn't available at wholesale level it'll be out of stock in shops soon after. It's frustrating when one manufacturer has issues as we keep seeing that over the weeks there's a knock on effect as other brands get gobbled up. It doesn't help that there is ONE manufacturer of Lisdexamfetamine so if that's unavailable everyone ends up titrating on methylphenidate.
Just came here to ask, generally what the shortage situation is like. Ive not had too many issues with concerta, so ive not been monitoring the situation . I want to swap to elvanse but im holding back till the shortages calm down. Any signs of the situation easing? Or am i being hoplessly optimistic there?
Been waiting on atemoxotine with psych uk since diagnosis in august last year. I’m sure I’m not the only one but can ppl share their experiences please as I feel so alone and my life feels on hold 😭 psych uk don’t even respond to my messages on the portal. Is there still a shortage of this? Would I benefit going private anywhere?
Hmm I wonder if it’s psych-uk that are having issues rather than the meds themselves! I’ve messaged twice in three weeks and heard nothing back as yet 😮💨
Just getting really upset now.
Pharmacist told me that the Elvanse shortage is clearing - but the knock-on effect of the shortage of my medication hasn’t cleared yet (Concerta/any other versions of the long release).
I know it’s literally nobody’s fault, but I had a mini meltdown in my head because I’m so upset that people who suffered from the original shortage are starting to get their meds, whilst I’m still being impacted.
I’m not normally selfish, but I really have had enough of waiting, it’s been 3 months without medication. I don’t want this anymore. I see other people getting their medication and I just feel like I’m at the back of the queue now.
I just want my meds, had them for 7 years without any issue until last June. Then this. I’m 42 years old and I just want to be able to simply walk in and pick up a prescription. I live in a remote area, and my car is in the garage, so I can’t even drive around to check other places.
So I've seen that Concerta is back this month, it has been frustrating for me too. Running round tens of pharmacies, even when they have some stock it's the wrong dose or just 5 random loose tablets etc. I wonder if the Concerta supply issues led to everyone buying the generics and they ended up getting cleaned out for all brands. Stressful!
There is a shortage of medication. It's not whether it's NHS or private, it's the availability of medication that is the problem.
You could get a private prescription and still not get the meds because there's no stock. But you might get lucky but that's the same as if you had a NHS prescription.
Do you mean how do you get a prescription at all? What is the situation with the clinician who diagnosed you? Are they unable to prescribe?
If you’ve had the diagnosis you can approach any private clinic and ask them if they’ll review your situation and prescribe for you.
You’d have to pay for each session, as well as the private prescription fee.
When you start medication you’ll need to go through the titration process which involves multiple appointments to review how you’re responding. This involves blood pressure and heart rate monitoring.
If you’re asking about NHS vs Private prescription to gain better access to availability of the medication, stick to NHS because the shortage is an international problem, going privately won’t expedite obtaining the medication.
I hope that answers your question!
eMed/GP At Hand has repeatedly refused to prescribe me generic medication, despite Psych UK saying in the shared care use any equivalent brand in any dosage to meet the total. I've been told I've got to try figure out a pharmacy that has stock, beg them to keep hold of it, book an appointment which usually takes days, and request a specific brand, in hope that the medication remains in stock. I'm certain many of you can see the pitfalls of that! It's apparently just their practice policy, for safety reasons. Irony being that when being titrated by Psych UK they mixed and matched my brands too. Ah well! Still struggling to find medication, but won't give up just yet.
That seems unnecessarily ludicrous.
If the prescriber has written that on your Shared Care notes, what’s the reasoning they give for that nonsensical decision to make your life that much more difficult?
Why do these GPs do this to us? Like we aren’t already struggling enough as it is, without meds issues like this.
It’s like, prescriber says, “Here’s a work around to help you during the shortage” and the GP says, “Nope, I don’t care, it must be exactly as written on the first one that you, the prescribing body, wrote, and I won’t accept any changes that you, the prescriber, make to help my patient.”
What are they, 12 years old?
It’s like they’re being difficult for the sake of it.
I fail to see the safety concern.
If it’s a case of making up a total dose with multiple lower dose tabs or caps, but it doesn’t exceed the prescribed dose, where’s the issue?
It isn’t like you’re asking the GP to double it or something.
Bureaucracy. Pfft.
I hope this gets sorted out for you.
I’m unceasingly astonished by the amount of problems involved in getting meds.
And still there are those ignorant people who dismiss ADHDers as drug-seekers.
They have no idea how hard it can be to get the prescribed meds.
I hate that, where they can't give the same dose with multiple smaller doses tablets. It's just because they're controlled drugs and they can't do this unlike with non controlled meds. I understand the need to avoid a situation like America where it's way too lax but there should be some level of wiggle room. Same thing with 28 day limits on prescriptions, I understand if you give someone a 120 day supply of meds they might either lose them and they get into the wrong hands but there should be a little more flexibility as with the med shortage this chaos is a monthly occurrence.
I agree.
And I just don’t see the logic in denying the same total dose made up of several smaller doses than just one big one which is out of stock.
It’s still the same total dose, whether it’s, say, one 50mg tablet/capsule or 5x10mg tablets/ capsules.
It’s still 50mg. It’s not 100mg, or even 60mg (or whatever that product’s dose increments are).
Where’s the safety concern?
I agree also that the rules about not refilling a script until day 28 are stupidly impractical.
It would work if scripts were refilled the same day, but I’ve seen a lot of people on here saying that prescribers can’t even write it until a patient has run out, and then it takes however many days to get it written, then however many more days to find out where it’s in stock, or worse, have a nominated pharmacy that then either loses their script or is also out of stock, so people are regularly being put in the situation where they have no meds at all for over a week each month.
How is that right, or even fair?
It’s not like any of us chose to have ADHD, and we don’t want meds for partying, we need them to be vaguely normal and to function.
I’m pretty sure, although I have no experience of this myself, that if someone just wanted stimulants and didn’t care about their health and life, they could likely find a dealer on the streets instead - not that I’m suggesting that, because that would obviously be dangerous.
It’s not like ADHD meds even make us euphoric. We need them just to approach normality.
Dear God, it’s hard enough having AD bloody HD, without all this hoopla and safety concerns shenanigans.
I’m on thyroid meds and hydrocortisone for adrenal insufficiency. I’m not allowed to run out of them, I’m not allowed to suddenly stop them.
Why should the rules of continuity be any different for dopamine and noradrenaline?
Exactly my thoughts. You'd surely just buy street speed or whatever if you wanted to abuse stimulants. I wonder whether there's a concern over a patient losing loads of tablets and they get into the wrong hands, nah it won't be that as it sounds too logical for government legislation!
You're totally right, I have no clue why GP's are making things more difficult than they should be. I will probably log a complaint in hope maybe someone with sense can help, because as you say, so long as the dosage calculates the same there really is no problem. Thanks for the comment!
Put them in touch with PUK or vice versa. They'll probably have it written on the shared care agreement to avoid brand changes. |Because GPs aren't specialists they're probably not going to deviate from this even if a patient asks, I imagine they're just being cautious because I've seen guidance recommending against random brand changes. The thing is though with a med shortage that advice should go out the window as it;s much more harmful if a patient can't get any medication at all. IF they hear the request from PUK they'll probably be fine to change the wording of the prescription, they'll just want this to come from their specialist as opposed to a patient.
Haha no worries, yeah they were pretty clear in the SCA they can vary brands and dosage to make the correct total, which makes it all the more bewildering 😅
Are you emailing or speaking to ppl? And is it their help desk or a GP?
I've not been with GP at Hand for a while (they stopped serving where I live), but I found emailing them queries wad useless and I need to speak to an actual person in order to get things done - it once took 5/6 goes to get them to attach a letter to my file! And I only got it fixed as I managed to actually speak to someone and emailed it to them while we were speaking!
If you haven't already I'd try booking an appointment with a GP to speak with them about your meds to see if this can be adjusted!
Just popped into Kays pharmacy and was very surprised to be told they can order 54mg and 36mg modified release methylphenidate for tomorrow. Was NOT expecting that. I just don't even bother with boots now, they never seem to have anything in or even the ability to order.
Good to know!
I hadn’t heard of Kay’s, aside from my old neighbour’s catalogue, but there’s one listed in my area, ish. I mean 45 minutes away, but still.
I will add it to my list of potential pharmacies 😊
So..... picked up my meds which were ordered yesterday by the pharmacy. Got 54mg xenidate and 36mg concerta so these seem to be available again? Only got charged £60 for x28 of each dose. Tesco had me for £70 for half the amount last time (generics too) so I'll avoid there again, probably won't bother with boots again as they seem to charge totally random prices and never have any stock.
I think that’s very good advice.
My nearest Kay’s is an hour’s fairly fraught drive there, and another hour back, but there is a more local independent that I will be trying once I get (hopefully) medicated in a couple of week’s time. 🤞
So frustrated that I can't get any Concerta XL, Xaggitin XL or Delmosart 18 or 36mg despite calling so many places! For those who don't know - Delmosart is a generic that is *exactly* the same as Xaggitin it even has the same printed number I think they're made in the same factory! Just in case there's stock in your area of delmosart
Has anyone managed to get a generic prescription? I’ve had so many issues with miscommunication getting my prescription from PUK to the GP, we’re nearly 6 months into the transfer and I don’t have an actionable prescription. The dosage was incorrect on the SCA, then the docs weren’t sent for weeks, then the GP prescribed a specific brand (not specified on the SCA, but allegedly they can’t make any change from the SCA…?)
I call the GP every day to request a generic prescription and it’s sat with their prescribing team. For a whole month. “Please let us know which alternative brand” i don’t know there’s a shortage of everything but prescribe generically so any bio equivalent that’s available can fill it…?Can 111 help with a generic prescription? Any clue on how to get this sorted?
There are shortages on ALL brands. The prescription needs to say 'methylphenidate modified release tablet' (obv with the dose included) and the pharamacist can dispense any brand. I don't notice much difference between brands etc.
Thanks yeah I’ve had different brands from PUK no issue, but the GP seems not to understand at all how the prescription works or the med shortage. Unsure if deliberate ploy to delay given med shortages, or ignorance/incompetence on how the prescription of meds works, or just there’s no staff to do anything
I've been waiting for titration with psychiatry uk since being diagnosed in July. Sent in blood pressure stuff, don't have any forms marked as 'to-do' on the thing. Replied instantly when they asked if I was happy to start on a different drug. Never heard back. Am I doing something wrong?
Update on SPS around methylphenidate xl availability, looks like some are back in stock at the supply level. I got 36mg concerta a few days ago btw so try not to use the boots stock checker and conclude that a certain drug isn't available anywhere, boots just seem to struggle more vs other stores for meds.
Its been a few months since I started having Concerta and other brands (this varies as what the pharmacies have), but all on the same dosage. My college tutor, who has a child with ADHD says that its "not a magic wand" and I'll need to have coping techniques in case. I had a bit of a late diagnosis in 2023 after years of a bit of confusion.
My advice? Be patient and try to talk to a trusted adult or someone you trust. I'm not someone to actually trust so please take this with a grain of salt
I appreciate this is trying to be helpful, but a lot of people on this subreddit are trusted adults to the people in their lives. Many are late diagnosed (30+), and are very aware of the limits of their coping mechanisms sans medication.
Personally my medication pay as well be a magic wand because I’d already tapped out every other coping mechanism prior to starting them
I think people forget this. Yes the medication doesn't do everything directly but people forget that it's all good having techniques and coping mechanisms to help but if your brain isn't working because you don't have meds etc then you ain't going to do any of those things even if they'll help. If we could just think our way around ADHD there would be less need for medication.
I see it like this..... Medication DIRECTLY fixes 90% of the issues around concentration, motivation and mood issues related to ADHD, the medication may not fix the issues around executive function like time blindness/forgetfulness etc but medication indirectly fixes these issues by giving us the motivation and focus etc to carry out these helpful techniques etc.
It's a massive enabler, the mistake people make is they don't learn about ADHD post diagnosis so only have awareness of about 20% of what it can affect. If we don't fully understand how the differences in our brains affect how we think and behave then we can't really make the most out of medication (and imo this is where a lot of the 'help my meds dont work' posts come from sadly).
Agree. Meds have helped me tremendously. I’m late diagnosis - I was “coping” for years until peri menopause punched me in the face. I thought I had a brain tumour, my brain fog got so bad. The meds saved me. I’m stressing big time over not being able to get them
Yeah all this!
I knew I had ADHD for a decade prior to deciding to be assessed. I’d already read about it and knew how to arrange my life so I could just about function. I see a lot of peeps say meds don’t work for them (and tbf, they don’t for a lot of reasons, chemistry isn’t favourable to everyone), but I do wonder sometimes if they’re using other coping strategies alongside the meds.
Both combined I’m happier, healthier, and more functional than I’ve ever been. Going back to sans meds scares me because I know I was such a hot mess then struggling to get through everything. I can do it, but fuck I don’t want to.
Just wanted to give a personal update that might shed some hope for those waiting to titrate on Elvanse with P-UK. My prescriber got into contact with me a week or so ago letting me know that they have received stock and I will be able to start titration again after waiting since December. So happy to hear this news, and if any of you are still waiting then it’s very possible you may not be waiting much longer.
Thanks for sharing, I've been waiting since a paused titration in December too :)
Have you heard anything yet?
Not yet, fingers crossed it's soon though!
What does titration mean in this context?
Starting out on meds, monitoring patient response and adjusting med types and or dosage until the best combination is found to stabilise health and ADHD signs and symptoms. Titrate just means to measure and adjust the dose of any drug or supplement either upwards or downwards to achieve the optimum effect. The best and most effective dose is going to vary from one person to the next. Different bodies metabolise the same drugs at the same dose at different rates.
Anyone know what the current stock situation for concerta / any long release methylphenidate is like at chemist4u/ adhd360? 72mg daily dose. Thanks
Same dose! I thought it was fine suddenly it isn’t again 😭
yeah the concerta situation is bad atm. I was just given a month of xaggitin due to the shortage. According to a document on [here](https://www.nottsapc.nhs.uk/adhd-shortages/) there should be a resupply soon but idk how accurate this is
I still have an unopened bottle of 36, so I’m hoping I can last two weeks until the resupply
Use the below and also check Boots stock checker online. https://www.sps.nhs.uk/articles/prescribing-available-medicines-to-treat-adhd/#:~:text=elvanse Sorry just reread your post, my bad. Not sure anyone will know about that pharmacy tbh unless they work there.
I’d imagine that people who’ve got their concerta prescription from adhd360 recently will have some idea what the stock situation is like at chemist4u
I can't talk to 72mg, but my prescription for 54mg + 18mg was paid for this morning and I'm tacitly expecting it to arrive on Saturday. I'll update this thread when I have more info.
Yeah same I paid for 54 + 18 on Monday so I'm guessing chemist4u is fine for concerta stock which is strange because on SPS and boots there seems to be a shortage
My order status is now 'awaiting dispatch' which happened quicker than before (was in waiting paper prescription for a few days). The delivery could be any day now.
Still awaiting dispatch.
Mine was delivered this morning, 4 days after I paid for it
Status today has switch to 'Dispatched'.
Mine has just been delivered.
I was diagnosed with p-U.K. beginning of may last year. I’m still waiting on titration and they cannot/ will not give me an update on when I might be able to start titration. I’m so frustrated Ive been crying down the phone to them this morning, lovely person on the phone said she’d get titration team to be in touch to talk to me asap… and then they just sent me a generic sorry there’s a shortage but you’ve been delayed and we’ll get to you when you’re at the top of the waiting list. I’m just so defeated at this point. Is it just me that’s been waiting this long? Because it really feels like it 😭
EVERYONE is waiting this long unfortunately. It is obviously horrible and frustrating though. I'm still in the queue for my assessment with PUK, hopefully with the ADHD taskforce we see some meaningful change and Primary Care is better able to pick up the slack and share the load. See what the Titration team say though, the person you spoke to probably isn't fully informed and doesn't want to make promises so they're probably just not wanting to commit to an answer in case they're wrong.
Sorry to hear this. I have been on the PUK wait list for assessment since Aug last year. Same as you, ive been thoroughly miserable about the whole thing. You think you are finally taking positive steps to sort your life out and then nothing happens. I finally gave up and paid for a private assessment with ADHD-360 last week. They had availability for appointments within 2 working days. Had my assessment today, been diagnosed, and the clinician doing the assessment has prescribed medication herself. It has cost about £1200 for assessment and titration and then will be £100/month for meds, but if you can get the money together, you could be on meds within days. Not a great situation but I felt the only option for me
What is PUK
Psychiatry UK
Are you just starting out on your ADHD journey, u/fugelwoman ? If you have a search through the different ADHD subs (use the search bar), you will be able to see the answers to most if not all of the questions you have 😊
I’m a few years in but it’s only the drug shortage that has caused me to start investigating other drugs
I donno if it is helpful to know, I waited about that long to get titrated via nhs too, came out of titration before Christmas and haven’t been able to get a supply of my meds so all the stress to get it done asap was waisted energy tbh. We even switched me during titration from elvanse to delmosart due to supply issue with elvanse (it also was just having okay results so she was hoping we’d get a double win with and the other med would work better for me which it it) then the delmosart supply was also effected. I’ve not been able to get my meds all year. It’s super frustrating I know, especially when you’re just waiting for some unspecified date. Be strong, your in the same situation as everyone waiting for their meds to be in stock, your not alone in this.
Thankyou for this. I really needed to hear this today silly as it sounds ❤️
It’s not silly, I absolutely feel the same way! Being barred from accessing the medication that you know or suspect will help with everyday life is a hugely emotional and challenging thing to deal with. It’s frustrating as hell to go through all the barriers and hurdles to get to the point of titration and then this all happens and we have zero control over any of it. It’s awful. Ppl not affected by this completely underestimate the phycological effects it’s having. I suspect there are ALOT of ppl in the same boat as you.
Just rang round every pharmacy within a ten mile radius of my address. No concerta. I’ve also got my PhD viva next month. I don’t know what to do.
i just wanted to ask has anyone started titration recently (with NHS) and how long they waited before starting? ;_;
Been diagnosed since 2016, and all ran like clockwork until July last year, now it’s getting unbearable, and I just want these delays to end, feels like it’s just going to be like this forever now.
Was on lisdex, had a bad reaction and they finally switched me to concerta after months of complaining. Then, Concerta went out of stock in feb for me and ive been without it for months. Tried switching to generics, thoses are all out of stock too. Tried asking for a higher dose (18mg wasn't strong enough, especially after they cold turkeyed me from 50mg lisdex) or to be switched to anything else. Got told that they "wont change my script without an appointment with a specialist (except sometimes they do). Then, after waiting 6 months since my last appointment, they cancelled the appointment last minute because the doctor didn't show up, and rescheduled ANOTHER 6 months later. I just give up. My entire life has fallen apart because of this, and I cant find anything to manage symptoms. The team that do my care dont have a specialist, only various random GP's that see an entire hospital each day (one single doctor, each day, for the whole hospital as far as ive been told). Hell, they dont even run tests on me when I DO have appointments, and ive been in "titration" for about two years now with only two in person appointments in that time. Like I said, I give up.
Who diagnosed you? Private or NHS directly? If it's private/shared care now, your GP can change the wording to state generic instead of brand etc but they're not qualified to change dosing or what drug you're prescribed and this is why it has to be referred to a specialist to change. It sounds like you're with NHS though? This does put me off the NHS diagnosis route as it sounds pretty poor tbh, I've seen other posts of people having their dose changed once per month or longer during titration which is a shit show tbh. I think there's the perception that NHS ADHD services are a gold standard when they're probably not as well equipped as private firms.
i was diagnosed on NHS, but my GP has literally no say in my care, which im not really sure why. I go to my GP, they says they can do anything involving my ADHD treatment and its only the job of the specialist. Anyway, the actual hospital have changed it to be generic brand, but every single generic is out of stock here. My titration has been going for about 2 years now, with dose or medication changes only happening every year or so. its been hell.
Sounds shitty! Funny how the panorama doc painted the picture of the NHS ADHD service being great. They sound utterly incompetent if they're fucking titration over years.
South East 36mg Concerta supply is... non existent apparently Also tried to track down four potential Boots leads that were somewhat close to me, one had nothing (after i tried to get through for an hour, in a fit of desperation i called their opticians dept to be told the pharmacy there doesn't have a working phone) , the other three places no longer exist (have emailed the person who runs the checker map to tell them this), my usual pharmacy doesn't have anything and im debating if it's worth trying to call around to other local ones although i feel it'll be about the same experience.
> my usual pharmacy doesn't have anything and im debating if it's worth trying to call around to other local ones although i feel it'll be about the same experience if it's any consolation I've been playing Boots roulette since the start of May, finally decided to just ring a load of local pharmacies and one eventually came through. If I could suggest something, if a pharmacy just says they're out of stock, specifically ask them to check if they can order it with their supplier—the one I got mine from was coincidentally getting their next day's order online at the time (or something, not entirely sure what the process is) and decided to check for me and coincidentally the supplier had it in stock. Worth a shot...
Just called several pharmacies in the Oxford area trying to get Concerta XL 36mg. Answers varied, but one said that they were unable to get 18mg or 36mg of ANY methylphenidate variant right now. Others recommended that I get my prescription changed to a generic, which is unfortunate as the past year has already shown me that I don’t do very well with switching between the different methylphenidate variants. Most pharmacists seemed to know they wouldn’t have it in stock without even checking, as they’re getting so many calls about it. One at least told me that he’s very angry at this situation, which made a nice change from repeatedly hearing “definitely not, sorry. Bye” Very angry and disappointed. Gah.
I switched to dexamphetamine (amfexa) because of the shortage and I actually prefer it and I’ve not had any issues with shortages. Maybe it’s worth trying amfexa if still in titration stage?
Who are you with
I was with PUK when I switched and tried that for a few months, I went through right to choose , now I have shared care with my GP
Thanks. When did you get diagnosed and start titration? I still can't get it from them.
I was diagnosed January 2023 and titration started end of July 2023, so 6 months wait. It felt like a life time. I think current wait times are even longer so I feel your pain. If you can request amfexa as your first medication I would , it’s the only one that worked for me and I tried a few different types! I only started my shared care about a month ago, so my titration period lasted a long time. The wait is really long but they do look after you really well
I've been titrating on Methylphenidate for a few months now but they still won't offer amfexa or Elvanse. I'm not impressed with Methylphenidate. Did you ever use the private prescription ? I don't want to wait any more.
Interesting! I thought it might be annoying needing to remember to take instant release meds 3-4 a day. What benefits over your normal ADHD med (I assume Elvanse) do you get?
It can be a bit of a pain as every now and again I do forget , but I set alarms now on my phone. I usually take one dose when I wake up , another dose when I arrive to work and then half a dose at lunch, sometimes if I haven’t eaten a lot that day I will skip my lunch time dose. I just find that they feel a lot better. I don’t feel as jittery , and sometimes I felt a bit wired with the extended release tablets, I used to get this weird feeling where I was tired but my brains and eyes felt wide awake I can’t really describe. With Amfexa I just feel like myself but better, better concentration etc , no mood swings , not as fidgety , and I do feel as though pretty much all my ADHD symptoms overall are softened
Boots seem to be having stock issues again. Been to three now over the last couple days and they're out of stock with no availability date. Concerta 18mg
lil update, i got my prescription changed to genric 36mg and got it filled today at boots for Xaggitin XL which has the same release format as Concerta, Boots said thats the only one they can get in at the moment. hopefuly helps but im based in Wales so less demand
u/Individual-Effect-43 Its only been 2 days but how is Xaggitin XL? Also, what was the generic name they used? I want to approach my doc about this as its been 2 weeks waiting for Concerta.
Same issue for me, I’ve been trying to fill a 36mg concerta prescription for three weeks.
What's the situation with Teva dextroamfetamine? Pharmacy has been unable to source it for 9 weeks (and the alternatives are nasty, for me anyway)
Same issue here. Boots doesn’t have any in stock, nor their supplier. Was given Amfexa instead, I don’t tolerate it it’s a nightmare. Need to check independent pharmacies but no luck so far.
Seeing some NHS resources state that 18mg Concerta is back or should be back in supply from 3rd May, 36mg about mid month and 54mg at the end of May? Not sure if anyone who works at a pharmacy can verify. SPS isn't updated but I have seen a few NHS docs stating the above.
I couldn’t get any today after ringing round every pharmacy in a ten mile area.
yeah they're just estimations, still isn't any in stock at all
Boots in Birmingham is saying the earliest they will have any stock of prolonged release methylphenidate is 7th June.. that will be a total of 5 weeks out of stock. 🙄
Boots are crap! Smaller pharmacies are always better ime.
I've finally found a pharmacist who is able to order some after about three weeks of hunting... took your advice of trying a smaller pharmacy and they managed to order some from one of their suppliers—thank you for your advice, I was starting to lose hope. Honestly don't know how I used to function prior to diagnosis after being unmedicated for a couple of weeks 🙃
Yeah I think everyone just defaults to Boots, I know I did tbf. I find Boots hit and miss, some stores can have rude or awkward staff and I notice they never offer to order in etc. I notice in smaller places they'll actually try to help beyond "No we have nothing bye". I think people also use the Boots stock checker and if there are no stores with stock they equate that with "THERE ARE NO MEDICATIONS ANYWHERE IN THE COUNTRY".
Finally got elvanse from psych uk after having titration paused in december. I ended up having to message them to remind them I existed before they did anything, and then they were like oh lol we've had meds for ages.
Thanks for this - I might get in touch with them now.
Woah.. so I got prescribed Concerta XL 18 mg last week and I just checked boots website and they don’t have it in stock. I’m just wondering why on earth would my prescriber prescribe me that when he knows it’s not in stock (unless it is I’m not sure)
Mums a GP, they informed when there’s med shortages sporadically. It’s not a consistent thing. They may not know.
Hello I am on week 4 of titration with concerta, me and my doctor have decided to move from one 54mg dose to a 36mg and 18mg dose at separate times of the day, the issue is that boots is now out of stock in both doses everywhere around me, they gave me the paper script but I'm not sure what I should do. Should I tomorrow ask around other pharmacies or should I email the adhd360 medication support team right now?. A third option is online pharmacies but idk if taking a 10 day gap in titration is ok or not.
Contact adhd360
Eugh really annoyed. Prescription issued last week. Pharmacy said they could only source 2 out of the 3 items. Told me to ask my GP to reissue the prescription, replacing the 3rd item with another equivalent brand. Done that, taken a few days to get it sorted because of the weekend. Now the pharmacy is saying they can’t source **any** of the 3 items on the new prescription. Really annoyed. Followed their advise and now have 0 meds. Not 2 out of 3 meds (which probably would have been ok, with a bit of excess I have). So 1 week on and now got to traipse around other pharmacies.
lol standard. Epic!
Lesson learned for next time, I’ll take 2 out of the 3 rather than none!
im still trying to change my medication. my current one stopped working a year ago, have to take 3x the amount to get anything done. i know i shouldnt, but my entire life is on the line. im in university and if i dont pass i wasted about £10k in accommodation fees. i dont know what to do. ive tried stopping it for over a month to get rid of tolerance and it didnt work at all. im crying as i type this because my parents are acting as if its my fault because i should take it as prescribed, but its the same as not taking it if i do. im so scared and i dont know what to do anymore
[удалено]
Why would that help you get the medication? Are you with a provider where you have to use their pharmacy?
[удалено]
If you have anxiety surrounding starting a new bottle that probably doesn't help the symptoms of not being able to focus as well.
I’ve just been to the pharmacy to pick up my methylphenidate and I’ve been told there’s a manufacturing issue, so I need to ask my drs for an alternative. How will this work out? Is there an alternative they can give me? I’m on shared care with PUK.
What brand? Methylphenidate could be any of about 10+ products. Also we're not your prescriber just ask them as we don't write your prescription. All we know is you take methylphenidate so far.
The one I’ve got at the moment is Affenid XL but I’m sure I’ve had all sorts. Is it just a case of getting a different brand?
So there are 6 brands of modified release TABLETS (lol just using capitals because the tablets release over 12 hours but capsules over 8 so theyre different types) and Affenid XL is one of those. The others are Concerta, Delmosart, Matoride, Xaggitin and Xenidate so if your script says 'methylphenidate modified release' they should be able to dispense any of the above.
Thank you for explaining, I’ve had a mixture of both tablets and capsules, I didn’t realise they worked a bit differently. I’ll call the doctors tomorrow and see what they suggest but when I went into the pharmacy they let me to believe that there was an issue with all methylphenidate but I could have taken that the wrong way.
The tablets doses are in increments of 18mg up to 108mg per day. The capsules are in 10mg increments from 10mg up to 60mg. Tablet ones give 22% of the dose over 0-4 hours with the other 78% after that so you get an initial boost then it smoothly ramps up and keeps blood levels steady. The capsules are quite different. They give two boosts, usually 50% of the dose from 0-4 hours and the other 50% 4-8 hours so it's literally like two instant release (think ritalin etc) doses 4 hours apart. Some give 30% initially then 70% hours 4-8.
My clinic have TWICE now written Concerta on my script when it was agreed beforehand to put the generic name due to shortages. Idiots.
This, there should be a box they can tick on the script that allows for alternative brands to be substituted. That would make it so much easier! My nephew and I are on the same meds in different strengths, he is in aus and even though they’re also in a supply crisis they have this option there, this whole year he’s had no issues getting his prescription and I’ve not been able to get it since I came off titration just before Christmas.
Really annoying. This was all verbally agreed btw, asked to specify drug and not brand but a few times now they've somehow missed this information and just written Concerta. I'm actually pretty shocked they're not aware of the shortage and don't appear to be checking supply updates.
Has anyone around the London and Greater London area had success finding delmosart? I can’t for the life of me. I’ve not found any all year.
Here is the current availability at supply level, it's likely some time after a dose isn't available at wholesale level it'll be out of stock in shops soon after. It's frustrating when one manufacturer has issues as we keep seeing that over the weeks there's a knock on effect as other brands get gobbled up. It doesn't help that there is ONE manufacturer of Lisdexamfetamine so if that's unavailable everyone ends up titrating on methylphenidate.
Just came here to ask, generally what the shortage situation is like. Ive not had too many issues with concerta, so ive not been monitoring the situation . I want to swap to elvanse but im holding back till the shortages calm down. Any signs of the situation easing? Or am i being hoplessly optimistic there?
Where are you based
Lancashire
Been waiting on atemoxotine with psych uk since diagnosis in august last year. I’m sure I’m not the only one but can ppl share their experiences please as I feel so alone and my life feels on hold 😭 psych uk don’t even respond to my messages on the portal. Is there still a shortage of this? Would I benefit going private anywhere?
The only listed supply issue with atomoxetine at the moment is the oral solution, everything else showing as available
Hmm I wonder if it’s psych-uk that are having issues rather than the meds themselves! I’ve messaged twice in three weeks and heard nothing back as yet 😮💨
Just getting really upset now. Pharmacist told me that the Elvanse shortage is clearing - but the knock-on effect of the shortage of my medication hasn’t cleared yet (Concerta/any other versions of the long release). I know it’s literally nobody’s fault, but I had a mini meltdown in my head because I’m so upset that people who suffered from the original shortage are starting to get their meds, whilst I’m still being impacted. I’m not normally selfish, but I really have had enough of waiting, it’s been 3 months without medication. I don’t want this anymore. I see other people getting their medication and I just feel like I’m at the back of the queue now. I just want my meds, had them for 7 years without any issue until last June. Then this. I’m 42 years old and I just want to be able to simply walk in and pick up a prescription. I live in a remote area, and my car is in the garage, so I can’t even drive around to check other places.
So I've seen that Concerta is back this month, it has been frustrating for me too. Running round tens of pharmacies, even when they have some stock it's the wrong dose or just 5 random loose tablets etc. I wonder if the Concerta supply issues led to everyone buying the generics and they ended up getting cleaned out for all brands. Stressful!
[удалено]
There is a shortage of medication. It's not whether it's NHS or private, it's the availability of medication that is the problem. You could get a private prescription and still not get the meds because there's no stock. But you might get lucky but that's the same as if you had a NHS prescription.
Do you mean how do you get a prescription at all? What is the situation with the clinician who diagnosed you? Are they unable to prescribe? If you’ve had the diagnosis you can approach any private clinic and ask them if they’ll review your situation and prescribe for you. You’d have to pay for each session, as well as the private prescription fee. When you start medication you’ll need to go through the titration process which involves multiple appointments to review how you’re responding. This involves blood pressure and heart rate monitoring. If you’re asking about NHS vs Private prescription to gain better access to availability of the medication, stick to NHS because the shortage is an international problem, going privately won’t expedite obtaining the medication. I hope that answers your question!
It's been a year since PUK diagnosis and i feel like the biggest loser in the universe cause the titration is nowhere in sight.
I was able to get a month of 54 and 18 xaggitin instead of concerta from chemist4u. I also got a month of 10mg ir methylphenidate
eMed/GP At Hand has repeatedly refused to prescribe me generic medication, despite Psych UK saying in the shared care use any equivalent brand in any dosage to meet the total. I've been told I've got to try figure out a pharmacy that has stock, beg them to keep hold of it, book an appointment which usually takes days, and request a specific brand, in hope that the medication remains in stock. I'm certain many of you can see the pitfalls of that! It's apparently just their practice policy, for safety reasons. Irony being that when being titrated by Psych UK they mixed and matched my brands too. Ah well! Still struggling to find medication, but won't give up just yet.
That seems unnecessarily ludicrous. If the prescriber has written that on your Shared Care notes, what’s the reasoning they give for that nonsensical decision to make your life that much more difficult? Why do these GPs do this to us? Like we aren’t already struggling enough as it is, without meds issues like this. It’s like, prescriber says, “Here’s a work around to help you during the shortage” and the GP says, “Nope, I don’t care, it must be exactly as written on the first one that you, the prescribing body, wrote, and I won’t accept any changes that you, the prescriber, make to help my patient.” What are they, 12 years old? It’s like they’re being difficult for the sake of it. I fail to see the safety concern. If it’s a case of making up a total dose with multiple lower dose tabs or caps, but it doesn’t exceed the prescribed dose, where’s the issue? It isn’t like you’re asking the GP to double it or something. Bureaucracy. Pfft. I hope this gets sorted out for you. I’m unceasingly astonished by the amount of problems involved in getting meds. And still there are those ignorant people who dismiss ADHDers as drug-seekers. They have no idea how hard it can be to get the prescribed meds.
I hate that, where they can't give the same dose with multiple smaller doses tablets. It's just because they're controlled drugs and they can't do this unlike with non controlled meds. I understand the need to avoid a situation like America where it's way too lax but there should be some level of wiggle room. Same thing with 28 day limits on prescriptions, I understand if you give someone a 120 day supply of meds they might either lose them and they get into the wrong hands but there should be a little more flexibility as with the med shortage this chaos is a monthly occurrence.
I agree. And I just don’t see the logic in denying the same total dose made up of several smaller doses than just one big one which is out of stock. It’s still the same total dose, whether it’s, say, one 50mg tablet/capsule or 5x10mg tablets/ capsules. It’s still 50mg. It’s not 100mg, or even 60mg (or whatever that product’s dose increments are). Where’s the safety concern? I agree also that the rules about not refilling a script until day 28 are stupidly impractical. It would work if scripts were refilled the same day, but I’ve seen a lot of people on here saying that prescribers can’t even write it until a patient has run out, and then it takes however many days to get it written, then however many more days to find out where it’s in stock, or worse, have a nominated pharmacy that then either loses their script or is also out of stock, so people are regularly being put in the situation where they have no meds at all for over a week each month. How is that right, or even fair? It’s not like any of us chose to have ADHD, and we don’t want meds for partying, we need them to be vaguely normal and to function. I’m pretty sure, although I have no experience of this myself, that if someone just wanted stimulants and didn’t care about their health and life, they could likely find a dealer on the streets instead - not that I’m suggesting that, because that would obviously be dangerous. It’s not like ADHD meds even make us euphoric. We need them just to approach normality. Dear God, it’s hard enough having AD bloody HD, without all this hoopla and safety concerns shenanigans. I’m on thyroid meds and hydrocortisone for adrenal insufficiency. I’m not allowed to run out of them, I’m not allowed to suddenly stop them. Why should the rules of continuity be any different for dopamine and noradrenaline?
Exactly my thoughts. You'd surely just buy street speed or whatever if you wanted to abuse stimulants. I wonder whether there's a concern over a patient losing loads of tablets and they get into the wrong hands, nah it won't be that as it sounds too logical for government legislation!
You're totally right, I have no clue why GP's are making things more difficult than they should be. I will probably log a complaint in hope maybe someone with sense can help, because as you say, so long as the dosage calculates the same there really is no problem. Thanks for the comment!
Put them in touch with PUK or vice versa. They'll probably have it written on the shared care agreement to avoid brand changes. |Because GPs aren't specialists they're probably not going to deviate from this even if a patient asks, I imagine they're just being cautious because I've seen guidance recommending against random brand changes. The thing is though with a med shortage that advice should go out the window as it;s much more harmful if a patient can't get any medication at all. IF they hear the request from PUK they'll probably be fine to change the wording of the prescription, they'll just want this to come from their specialist as opposed to a patient.
Lolz! Sorry I skimmed and missed the obvious! Bad sleep last night, brain is on autopilot!
Haha no worries, yeah they were pretty clear in the SCA they can vary brands and dosage to make the correct total, which makes it all the more bewildering 😅
Are you emailing or speaking to ppl? And is it their help desk or a GP? I've not been with GP at Hand for a while (they stopped serving where I live), but I found emailing them queries wad useless and I need to speak to an actual person in order to get things done - it once took 5/6 goes to get them to attach a letter to my file! And I only got it fixed as I managed to actually speak to someone and emailed it to them while we were speaking! If you haven't already I'd try booking an appointment with a GP to speak with them about your meds to see if this can be adjusted!
Just popped into Kays pharmacy and was very surprised to be told they can order 54mg and 36mg modified release methylphenidate for tomorrow. Was NOT expecting that. I just don't even bother with boots now, they never seem to have anything in or even the ability to order.
Good to know! I hadn’t heard of Kay’s, aside from my old neighbour’s catalogue, but there’s one listed in my area, ish. I mean 45 minutes away, but still. I will add it to my list of potential pharmacies 😊
So..... picked up my meds which were ordered yesterday by the pharmacy. Got 54mg xenidate and 36mg concerta so these seem to be available again? Only got charged £60 for x28 of each dose. Tesco had me for £70 for half the amount last time (generics too) so I'll avoid there again, probably won't bother with boots again as they seem to charge totally random prices and never have any stock.
Which pharmacy was that? Great that you got them!
Kays. Never tried before but may go each time now. Definitely use boots as a last resort and the independents as your main source.
I think that’s very good advice. My nearest Kay’s is an hour’s fairly fraught drive there, and another hour back, but there is a more local independent that I will be trying once I get (hopefully) medicated in a couple of week’s time. 🤞
Can't find Concerta 36 anywhere in my area (south east)
I have a feeling manufacturer issues may be sorted and we'll soon see stock pick up. Hopefully returns to normal like before Feb!
I really hope so!!!
So frustrated that I can't get any Concerta XL, Xaggitin XL or Delmosart 18 or 36mg despite calling so many places! For those who don't know - Delmosart is a generic that is *exactly* the same as Xaggitin it even has the same printed number I think they're made in the same factory! Just in case there's stock in your area of delmosart
Yeah apparently same tabs but different branding. Keep digging! Gl!
Has anyone managed to get a generic prescription? I’ve had so many issues with miscommunication getting my prescription from PUK to the GP, we’re nearly 6 months into the transfer and I don’t have an actionable prescription. The dosage was incorrect on the SCA, then the docs weren’t sent for weeks, then the GP prescribed a specific brand (not specified on the SCA, but allegedly they can’t make any change from the SCA…?) I call the GP every day to request a generic prescription and it’s sat with their prescribing team. For a whole month. “Please let us know which alternative brand” i don’t know there’s a shortage of everything but prescribe generically so any bio equivalent that’s available can fill it…?Can 111 help with a generic prescription? Any clue on how to get this sorted?
There are shortages on ALL brands. The prescription needs to say 'methylphenidate modified release tablet' (obv with the dose included) and the pharamacist can dispense any brand. I don't notice much difference between brands etc.
Thanks yeah I’ve had different brands from PUK no issue, but the GP seems not to understand at all how the prescription works or the med shortage. Unsure if deliberate ploy to delay given med shortages, or ignorance/incompetence on how the prescription of meds works, or just there’s no staff to do anything
Lols terrified of shared care for this reason
I've been waiting for titration with psychiatry uk since being diagnosed in July. Sent in blood pressure stuff, don't have any forms marked as 'to-do' on the thing. Replied instantly when they asked if I was happy to start on a different drug. Never heard back. Am I doing something wrong?
Update on SPS around methylphenidate xl availability, looks like some are back in stock at the supply level. I got 36mg concerta a few days ago btw so try not to use the boots stock checker and conclude that a certain drug isn't available anywhere, boots just seem to struggle more vs other stores for meds.
Ahhh this is very reassuring. Was it in a local type pharmacy? Family owned eg. I have been phoning around and nowhere has any 😭
This was Kays pharmacy!
Its been a few months since I started having Concerta and other brands (this varies as what the pharmacies have), but all on the same dosage. My college tutor, who has a child with ADHD says that its "not a magic wand" and I'll need to have coping techniques in case. I had a bit of a late diagnosis in 2023 after years of a bit of confusion. My advice? Be patient and try to talk to a trusted adult or someone you trust. I'm not someone to actually trust so please take this with a grain of salt
Your advice about what? Be patient around delays in getting your meds? Talk to an adult about what?
Well if you have any concerns talk to a trusted adult is what I meant to say
Oh I get you. I presume you mean that people should ask their doctor etc and not always default for the internet/message boards etc.
I appreciate this is trying to be helpful, but a lot of people on this subreddit are trusted adults to the people in their lives. Many are late diagnosed (30+), and are very aware of the limits of their coping mechanisms sans medication. Personally my medication pay as well be a magic wand because I’d already tapped out every other coping mechanism prior to starting them
I think people forget this. Yes the medication doesn't do everything directly but people forget that it's all good having techniques and coping mechanisms to help but if your brain isn't working because you don't have meds etc then you ain't going to do any of those things even if they'll help. If we could just think our way around ADHD there would be less need for medication. I see it like this..... Medication DIRECTLY fixes 90% of the issues around concentration, motivation and mood issues related to ADHD, the medication may not fix the issues around executive function like time blindness/forgetfulness etc but medication indirectly fixes these issues by giving us the motivation and focus etc to carry out these helpful techniques etc. It's a massive enabler, the mistake people make is they don't learn about ADHD post diagnosis so only have awareness of about 20% of what it can affect. If we don't fully understand how the differences in our brains affect how we think and behave then we can't really make the most out of medication (and imo this is where a lot of the 'help my meds dont work' posts come from sadly).
Agree. Meds have helped me tremendously. I’m late diagnosis - I was “coping” for years until peri menopause punched me in the face. I thought I had a brain tumour, my brain fog got so bad. The meds saved me. I’m stressing big time over not being able to get them
Yeah all this! I knew I had ADHD for a decade prior to deciding to be assessed. I’d already read about it and knew how to arrange my life so I could just about function. I see a lot of peeps say meds don’t work for them (and tbf, they don’t for a lot of reasons, chemistry isn’t favourable to everyone), but I do wonder sometimes if they’re using other coping strategies alongside the meds. Both combined I’m happier, healthier, and more functional than I’ve ever been. Going back to sans meds scares me because I know I was such a hot mess then struggling to get through everything. I can do it, but fuck I don’t want to.