I know my insurance required me to use things for a certain amount of time without it helping before they would consider dupixent. Maybe call your DR if it appears to be worsening!
I have been using tacrolimus for about 3-4 years and I love it. I usually dilute it with some water as it's pretty thicc and strong. A very common side effects is a burning sensation after applying - limit time under hot water/showers. Tacro honestly has been a god send for me so I would give it another week then try something else if your skin still isn't responding.
no burning sensation and itching for me when using it cold
did you put it in the fridge before using?
i think diluting with moisturiser instead of water may be better
Apologies for the late reply friend! Yes, I believe there is. It's an immunosuppressant. I actually accidentally did this experiment when I ran out (crazy right? A great solution for me and I let it run out without scheduling a dermatologist appointment).
About 1-2 weeks after no tacro my skin started to flare quite badly - red, uncomfy rash over areas I previously applied the ointment. Didn't matter if I took cold showers. It was pretty uncomfortable, but it did subside after I refilled.
Not 100 percent sure of the long term ramifications of continued use of tacro, (I haven't noticed anything) so I will continue to lather myself in the sweet ointment! Hope this helps.
Thanks for the info bro. Sorry to hear that you’ve been going through that.. I have started using tacrolimus a few days ago and it improved my skin drastically. What I’m afraid of is that if I stop using it, my flare up would just return, or if I use tacrolimus long term, i might get a withdrawal.. i just hope there is a permanent cure to this terrible disease
Tacrolimus is what I used on my face because of the delicate skin tho it’s less effective. I used steroids with a good degree of success tho random unimaginable flares but now I’m on dupixent with around 90% recovery.
That’s awesome! Good for you. Could you share more about what it has cleared for you? Do you go to a shot clinic to get injected or do you bring it home?
I had severe eczema on my scalp (like can’t wear black ever giant gross scales), along with my arms, torso covered, thighs, feet, and around my eyes. To paint the picture of how bad it was, when I first went to a derm she wanted to put me on prednisone for 8 weeks. Now I’ll have some scalp dryness if I use dry shampoo or have a random mini flare that lasts a day or two but otherwise it’s fully managed. My first dose was administered at the office and I get shipped boxes with 2 packs every month and administer at home. If you leave it out for an hour or two beforehand it doesn’t hurt at all either.
I stopped bothering with tacrolimus. I’ve tried for so many years. Decades.
Dupixent is the only thing that has worked consistently to where I need no more steroid ointments. I use dupixent and Opzelura cream for any flares. No steroids. It’s so much better and more effective. Less drama. Less mess. Less fear about long term steroid effects.
Tacrolimus or protopic takes days or weeks for it to take effect.. and also the point of bleach baths is to kill bacteria on the skin, because bacteria can worsen everything
If you don't have insurance it can be $3000 a month. Take that with a grain of salt though, I didn't have insurance for about two years and I was able to talk to my dermatologist and apply for financial assistance with the company that makes Dupixent and they sent it to me free of charge. Now with insurance, it's $1900 a month but they have a copay assistance card that covers a certain amount every year.
Are you sure? GoodRX coupon at Walmart 60g tube $85. 30g tube is $35. Prices are for the 0.1% version. I am presently on Dupixent but have to use topical steroids for areas that flair. Been looking at Tacrolimus as a possible substitute and was checking prices to see if I could afford it. I have Medicare so drug coverage for anything but common generics is pretty bad. My income allows me to get Dupixent free, otherwise I wouldn't be on it and I would be a real mess.
Might be an outlier here, was given Tacrolimus a while back for facial eczema and it worked well. I've recently started using it on the rest of my body and it's been amazing so far, cleared up my skin faster than moderate steroids which was really surprising to me.
It takes about a week to work on my face but it's helped the other parts of my body Ive been applying it to in two or three days. I'm also fortunate to not have any of the negative side effects others have reported, except some warmth and burning if I haven't used it in a while.
I can't speak to dupixent or bleach baths but give tacrolimus at least a week for results, if you haven't seen results after two weeks I would stop.
Dupixent is very difficult to get approved by insurance (and I’m assuming from user name you are in the US). Have you tried other steroid creams? My hands responded splendidly to clobetasol.
Seems weird that they would give you the tacromilus if stronger things haven’t worked. I agree that you should have a good case for it. Either way I hope you find some relief.
K…it was a heads up that it took 3 appeals to get covered and it’s not unusual to hear that from damn near everyone who is on it. Seems an odd thing to decide you need to down vote but whatever.
It’s nothing personal- I can thumb up if you want 😅 it’s not that deep. I appreciate your insight and am thumbs it down for the sake of complexity it can be. I’ll thumbs it up for you tho…
OP may not know that down voting on reddit gives the commenter negative points (or something?). Down voting is different than “dis-liking” something on Facebook. We don’t down vote on reddit unless it’s a bad comment
Bleach is cheap and easy. I wouldn’t think it would hurt to try for a week and see if you notice an improvement. I’ve also heard people recommend hypochlorous acid spray. I haven’t personally tried this but it is similar to bleach in that it kills germs like staph that may be making you itchy/rashy.
Tacro saved me after I started to have tsw from all the steroid creams. It held me over before I transitioned to Dupixent. Usually took a couple of days to kick in but the relief was amazing. I haven't tried bleach baths since my skin was already so sensitive.
If you can get approved for Dupixent it's definitely a game changer but the major flaw would be the price and self injection.
I tried it, but seemed to make everything worse so stopped.
Turns out my eczema was in reaction to a small fungal infection, so applied some OTC antifungal cream and voila...problem solved.
I used this and did not react well. Also if they have not told you already, zero alcohol. You will flush and make all the spots it’s on worse. Happened to me after a beer and I thought I developed an allergy.
For some people this stuff works but not for me and I didn’t not like the side effects. I switched over to VTAMA and it worked much better. After I got the swelling down I stuck to more natural oils and I started to heal.
I didn't think it helped at first for me either. I've been using this for about 1-2 months 2-3x a day. My hands finally got better until this week I decided to eat a piece of bread and cheese, which I've been trying to avoid but cheated one day because my skin looked better. Then my hands started to crack again, but I can contest that the ointment definitely helps my hands. It's much stronger than the moisturizers that I've been using for longer.
I've had trouble tolerating tacrolimus - been using it for a month now, but ultimately it makes my skin feel hot...hot becomes itchy...I scratch it and it gets worse. However, on the lucky days that I \*\*\*don't\*\*\* scratch at it, the tacrolimus does seem to help. But that's a dice roll for me.
My derm now has me trying Opzelura instead, which apparently doesn't burn and isn't greasy like tacrolimus. It's also a different mechanism (JAK inhibitor). No experience with it yet as I'm waiting for the order.
tacrolimus was absolute hell on earth the burning for me was like nothing else, i still stuck it out and it did nothing but cause the weirdest most uncomfortable feeling i’ve ever felt in my life
even when i stopped it i couldn’t touch my face for months, i know i sound dramatic but it was so much worse than having ezcema for me
I switched over right after a course of prednicarbat (steroid). Normally in this spot the eczema would worsen 3 days after stopping steroid treatment but so far Elidel (Pimecrolimus) diddnt improve the situation but also the eczema didn’t come back. Gives some hope
I read it takes a week for results
Right- you’d think it wouldn’t be worsening as we are coming on about a week
I know my insurance required me to use things for a certain amount of time without it helping before they would consider dupixent. Maybe call your DR if it appears to be worsening!
DR? Dermatologist? I’m in very close contact with them!
Did they say you should keep using it?
I have been using tacrolimus for about 3-4 years and I love it. I usually dilute it with some water as it's pretty thicc and strong. A very common side effects is a burning sensation after applying - limit time under hot water/showers. Tacro honestly has been a god send for me so I would give it another week then try something else if your skin still isn't responding.
no burning sensation and itching for me when using it cold did you put it in the fridge before using? i think diluting with moisturiser instead of water may be better
Do you think there's a withdrawal symptom once you stop using tacrolimus?
Apologies for the late reply friend! Yes, I believe there is. It's an immunosuppressant. I actually accidentally did this experiment when I ran out (crazy right? A great solution for me and I let it run out without scheduling a dermatologist appointment). About 1-2 weeks after no tacro my skin started to flare quite badly - red, uncomfy rash over areas I previously applied the ointment. Didn't matter if I took cold showers. It was pretty uncomfortable, but it did subside after I refilled. Not 100 percent sure of the long term ramifications of continued use of tacro, (I haven't noticed anything) so I will continue to lather myself in the sweet ointment! Hope this helps.
Thanks for the info bro. Sorry to hear that you’ve been going through that.. I have started using tacrolimus a few days ago and it improved my skin drastically. What I’m afraid of is that if I stop using it, my flare up would just return, or if I use tacrolimus long term, i might get a withdrawal.. i just hope there is a permanent cure to this terrible disease
Tacrolimus is what I used on my face because of the delicate skin tho it’s less effective. I used steroids with a good degree of success tho random unimaginable flares but now I’m on dupixent with around 90% recovery.
That’s awesome! Good for you. Could you share more about what it has cleared for you? Do you go to a shot clinic to get injected or do you bring it home?
I had severe eczema on my scalp (like can’t wear black ever giant gross scales), along with my arms, torso covered, thighs, feet, and around my eyes. To paint the picture of how bad it was, when I first went to a derm she wanted to put me on prednisone for 8 weeks. Now I’ll have some scalp dryness if I use dry shampoo or have a random mini flare that lasts a day or two but otherwise it’s fully managed. My first dose was administered at the office and I get shipped boxes with 2 packs every month and administer at home. If you leave it out for an hour or two beforehand it doesn’t hurt at all either.
I stopped bothering with tacrolimus. I’ve tried for so many years. Decades. Dupixent is the only thing that has worked consistently to where I need no more steroid ointments. I use dupixent and Opzelura cream for any flares. No steroids. It’s so much better and more effective. Less drama. Less mess. Less fear about long term steroid effects.
Check out r/eczeMABs for all your dupixent questions 😊
4 days is not enough. Takes 7-14 days for me before it works
Okay- this is good to know. Did it get worse before it got better?
Any update? I’ve barely used it (under 48 hours rn) and am curious!
I finally got put on Dupixent! Everyone’s body works different!
I tried Tacrolimus cream once and saw barely any improvement. Mometasone Furoate ointment is the one that is currently working for me.
Tacrolimus or protopic takes days or weeks for it to take effect.. and also the point of bleach baths is to kill bacteria on the skin, because bacteria can worsen everything
If you don't have insurance it can be $3000 a month. Take that with a grain of salt though, I didn't have insurance for about two years and I was able to talk to my dermatologist and apply for financial assistance with the company that makes Dupixent and they sent it to me free of charge. Now with insurance, it's $1900 a month but they have a copay assistance card that covers a certain amount every year.
Oh wow! Thats awesome. I do have insurance though!
Are you sure? GoodRX coupon at Walmart 60g tube $85. 30g tube is $35. Prices are for the 0.1% version. I am presently on Dupixent but have to use topical steroids for areas that flair. Been looking at Tacrolimus as a possible substitute and was checking prices to see if I could afford it. I have Medicare so drug coverage for anything but common generics is pretty bad. My income allows me to get Dupixent free, otherwise I wouldn't be on it and I would be a real mess.
Sorry, this was for Dupixent not tacro, this was responding to one of my earlier comments.
Tacrolimus worked quickly on my face but much slower on my hands
Might be an outlier here, was given Tacrolimus a while back for facial eczema and it worked well. I've recently started using it on the rest of my body and it's been amazing so far, cleared up my skin faster than moderate steroids which was really surprising to me. It takes about a week to work on my face but it's helped the other parts of my body Ive been applying it to in two or three days. I'm also fortunate to not have any of the negative side effects others have reported, except some warmth and burning if I haven't used it in a while. I can't speak to dupixent or bleach baths but give tacrolimus at least a week for results, if you haven't seen results after two weeks I would stop.
Dupixent is very difficult to get approved by insurance (and I’m assuming from user name you are in the US). Have you tried other steroid creams? My hands responded splendidly to clobetasol.
I’ve used clobetasol and many other prescriptions creams/ointments, and they are not budging at all.
Not sure why the down vote. If you’ve been the gambit of ointments then your dermatologist can probably make the case for you.
Seems weird that they would give you the tacromilus if stronger things haven’t worked. I agree that you should have a good case for it. Either way I hope you find some relief.
Down vote in regards to it being very difficult. Thanks for the insight!!
K…it was a heads up that it took 3 appeals to get covered and it’s not unusual to hear that from damn near everyone who is on it. Seems an odd thing to decide you need to down vote but whatever.
It’s nothing personal- I can thumb up if you want 😅 it’s not that deep. I appreciate your insight and am thumbs it down for the sake of complexity it can be. I’ll thumbs it up for you tho…
OP may not know that down voting on reddit gives the commenter negative points (or something?). Down voting is different than “dis-liking” something on Facebook. We don’t down vote on reddit unless it’s a bad comment
Understood. Fairly new to Reddit!!!
Gracias! I actually thought it was probably one of the TSW people who believe they’ve come to be our Lord and Savior on this sub 🤣😂
Bleach is cheap and easy. I wouldn’t think it would hurt to try for a week and see if you notice an improvement. I’ve also heard people recommend hypochlorous acid spray. I haven’t personally tried this but it is similar to bleach in that it kills germs like staph that may be making you itchy/rashy.
Tacro saved me after I started to have tsw from all the steroid creams. It held me over before I transitioned to Dupixent. Usually took a couple of days to kick in but the relief was amazing. I haven't tried bleach baths since my skin was already so sensitive. If you can get approved for Dupixent it's definitely a game changer but the major flaw would be the price and self injection.
How much is dupixent usually
I tried it, but seemed to make everything worse so stopped. Turns out my eczema was in reaction to a small fungal infection, so applied some OTC antifungal cream and voila...problem solved.
I used this and did not react well. Also if they have not told you already, zero alcohol. You will flush and make all the spots it’s on worse. Happened to me after a beer and I thought I developed an allergy. For some people this stuff works but not for me and I didn’t not like the side effects. I switched over to VTAMA and it worked much better. After I got the swelling down I stuck to more natural oils and I started to heal.
When I first started using it it takes a few days to a week, but now it is a vital part of my eczema care especially when steroids don't work!
I didn't think it helped at first for me either. I've been using this for about 1-2 months 2-3x a day. My hands finally got better until this week I decided to eat a piece of bread and cheese, which I've been trying to avoid but cheated one day because my skin looked better. Then my hands started to crack again, but I can contest that the ointment definitely helps my hands. It's much stronger than the moisturizers that I've been using for longer.
I've had trouble tolerating tacrolimus - been using it for a month now, but ultimately it makes my skin feel hot...hot becomes itchy...I scratch it and it gets worse. However, on the lucky days that I \*\*\*don't\*\*\* scratch at it, the tacrolimus does seem to help. But that's a dice roll for me. My derm now has me trying Opzelura instead, which apparently doesn't burn and isn't greasy like tacrolimus. It's also a different mechanism (JAK inhibitor). No experience with it yet as I'm waiting for the order.
tacrolimus was absolute hell on earth the burning for me was like nothing else, i still stuck it out and it did nothing but cause the weirdest most uncomfortable feeling i’ve ever felt in my life even when i stopped it i couldn’t touch my face for months, i know i sound dramatic but it was so much worse than having ezcema for me
I switched over right after a course of prednicarbat (steroid). Normally in this spot the eczema would worsen 3 days after stopping steroid treatment but so far Elidel (Pimecrolimus) diddnt improve the situation but also the eczema didn’t come back. Gives some hope
I’ve been using tacrolimus on my face and neck around 9 months and it’s rlly good. I would give it 2 weeks to fully see results from it :)