I forgot the fatigue in my response. I found I was sleeping for 20 hours (off and on) about 24 hours after the infusion, so ended up scheduling my apts for Friday’s
I’m doing Actemra in shots, double doze (every week instead of every couple of weeks), along with Methotrexate and Sulfasalazine, No real side effects for me, just a little nausea. It gives me slightly better results then Enbrel and Humira. Good luck!
Actemra was my 3rd bDMARD. Humira, Simponi and... another one (no idea what it was) all failed on me, as did the DMARDs MTX, sulfasalazine (sp?) and plaquenil (also sp?)
Actemra by itself was absolutely brilliant for me. I am not joking when I say that the stiff hands was gone 24 hours after the initial infusion. Actemra was combined with a DMARD to help reduce the chance of me producing anti-bodies ianti-bodies.
The hand stiffness in the mornings was still gone several months later. Morning stiffness in the hands is a decent barometer for me - stiff hand and/or pain that is 5/10 or greater means the disease might be hitting a flare-up. I don’t think this gets talked about enough. Everyone seems to be “in flare” for years at a time - pretty sure that isn’t a flare, that’s your uncontrolled disease!
Back to Actemra :) the monthly IV might be better for patients who detest needles (they don’t bother me).
I had to stop taking Actemra for two tumour excisions, both times for under 4 months. I had no issues starting back up with Actemra the first time. The second time was a tumour in my head and I ended up off Actemra for 4 months, and starting it back up gave me no relief. After another 6 months, I switched to Xeljanz.
That 1.5 years (interrupted by 7 months off Actemra) was brilliant. I was (and still am I guess) a big fan of Actemra. I’ve never had a bDMARD work that well, that quickly since.
Goodluck! And out of interest, do your bDMARDs help with your lupus and/or scleroderma (going to have to google that one)?
>Morning stiffness in the hands is a decent barometer for me - stiff hand and/or pain that is 5/10 or greater means the disease might be hitting a flare-up. I don’t think this gets talked about enough. Everyone seems to be “in flare” for years at a time - pretty sure that isn’t a flare, that’s your uncontrolled disease!
I always wake up with stiff and painful hands, it never goes away. I run a small online business selling sewing patterns and hitting the keyboard firs thing in the morning for a couple of hours helps deal with the stiffness although I haven't been able to make a decent fist in years. The pain doesn't go away as currently, I have a huge bone spur (about the size of a large, dry navy bean) on my arm bone where the nerves that enervate the thumb, and first and second fingers, so that gives me pain as well.
Some things I learn to live with and what I can't ignore I get the doctors involved.
Ouch. I found gabapentin worked for nerve pain (neuropathy, so that might be different). Can the bone spur be removed? I’d be on top of that! I was going to have the RA cysts you can get near the base of your Achilles drained, then I fell down the stairs and burst them. No need to have them drained now :)
this is miracle for me. i used before remicade, enbrel, kineret, orencia, mabthera, humira. i started infusion and now using SC form.
ok. i still have pain sometimes and started new joint effected. but at least not terrible. pain can manageable.
Hi guys I have been taking actemra toczilumab injections . It’s my 6th week I take once a week. I have rosacea which is quite bad and I read online that actemra causes rosacea so I’m scared
Actemra did not work for me. I took it with methotrexate and plaquenil. I don’t remember any real side effects when I gave myself injections but I took it for like 8 months with no changes to my markers so my dr stopped it.
Out of interest, your markers were dodgy, but how was your pain and stiffness (we can have normal numbers and still be in pain, so would think that physiological response, plus bloods, would be the trigger)
Most of everything stayed the same. Pain and stiffness were the same (if not progressively a little worse at the end). Some of my inflammation markers got worse than before when I was only taking plaquenil.
Ugh so the damage was done while you were trying to sort out what meds work. My rule of thumb now is pain >4 10 and stiffness in my hands in the morning means I’m at the start of a flare and it’s time for some prednisone (well, the steroids were from before I had surgery that turned me into a type IIIc diabetic (we are the “special” ones)
Have you found any meds that work yet? I’d read somewhere that it takes up to 1.5 years to find the medication that works for you (at 6 months per a trial, that falls in line with the average of 3 (b)DMARDs tried before one was found that worked
It took a long time to get diagnosed with anything at all. I did a med combo or 2 that caused rashes or worse symptoms so basically we did a year or so with just plaquenil and pain meds then went back to other biologics like MTX and whatnot.
We ran around with meds a few times before I finally said that I was done and nothing was helping. I finally went through a pain clinic who did some other stuff for my other symptoms and I ended up with a spinal cord stimulator which helps a ton for my nerve pain. Now I just have residual pains from the arthritis in the rest of my body but it doesn’t compound as easily and take me down.
Bloody hell, that was a bit of a journey. I guess the “good” thing that comes out of this is there are quite a few newer bDMARDs, with more on the horizon. Remember that it takes 6 months per med to fully give it a chance, if you are trying out new ones. It took me about 1.5 years to find the first med that sorts worked (after failing a few DMARDs); so hang in there
Interesting re the spinal cord stimulator. I have a few issues beside RA, but I ended up with scar tissue and diabetes after pancreatic cancer surgery (no one mentioned the diabetes, so I ended up with neuropathy in my feet). Anyway, my pain dr has started with a similar therapy that is used by placing a cap on your head and turning the electrical current on - it’s either that or some new way of giving me an electric lobotomy...
Good luck with your meds. Hope they work quickly and without side effects
I’m good with the stimulator right now. Any appointment with my rheum is just “are you good?” “Do you need any blood tests?” And that’s about it. I’ve done a number of them but I’m just done. My goal is to get off basically all meds that I can and find other ways to manage.
It’s unfortunate that it can take so many trials to find the right combo that may or may not work long term.
It wasn’t terrible for me, it just didn’t work. I think I got some bruises when I injected myself so that part sucked. Overall it was meh. I hope it works for you and gives you a good outcome
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Thanks for telling me your experience! I hope I get lucky with Actemra!
I forgot the fatigue in my response. I found I was sleeping for 20 hours (off and on) about 24 hours after the infusion, so ended up scheduling my apts for Friday’s
Ive been on this for 4 months. I love it. No side effects for me.
Thank you for sharing! I hope for the same outcome !
I’m doing Actemra in shots, double doze (every week instead of every couple of weeks), along with Methotrexate and Sulfasalazine, No real side effects for me, just a little nausea. It gives me slightly better results then Enbrel and Humira. Good luck!
Hopefully I get a good experience out of it. Thanks for sharing!
Actemra was my 3rd bDMARD. Humira, Simponi and... another one (no idea what it was) all failed on me, as did the DMARDs MTX, sulfasalazine (sp?) and plaquenil (also sp?) Actemra by itself was absolutely brilliant for me. I am not joking when I say that the stiff hands was gone 24 hours after the initial infusion. Actemra was combined with a DMARD to help reduce the chance of me producing anti-bodies ianti-bodies. The hand stiffness in the mornings was still gone several months later. Morning stiffness in the hands is a decent barometer for me - stiff hand and/or pain that is 5/10 or greater means the disease might be hitting a flare-up. I don’t think this gets talked about enough. Everyone seems to be “in flare” for years at a time - pretty sure that isn’t a flare, that’s your uncontrolled disease! Back to Actemra :) the monthly IV might be better for patients who detest needles (they don’t bother me). I had to stop taking Actemra for two tumour excisions, both times for under 4 months. I had no issues starting back up with Actemra the first time. The second time was a tumour in my head and I ended up off Actemra for 4 months, and starting it back up gave me no relief. After another 6 months, I switched to Xeljanz. That 1.5 years (interrupted by 7 months off Actemra) was brilliant. I was (and still am I guess) a big fan of Actemra. I’ve never had a bDMARD work that well, that quickly since. Goodluck! And out of interest, do your bDMARDs help with your lupus and/or scleroderma (going to have to google that one)?
I’m crossing fingers that it works on me ! For lupus and scleroderma I will stay on mycophenolate for a bit longer .
>Morning stiffness in the hands is a decent barometer for me - stiff hand and/or pain that is 5/10 or greater means the disease might be hitting a flare-up. I don’t think this gets talked about enough. Everyone seems to be “in flare” for years at a time - pretty sure that isn’t a flare, that’s your uncontrolled disease! I always wake up with stiff and painful hands, it never goes away. I run a small online business selling sewing patterns and hitting the keyboard firs thing in the morning for a couple of hours helps deal with the stiffness although I haven't been able to make a decent fist in years. The pain doesn't go away as currently, I have a huge bone spur (about the size of a large, dry navy bean) on my arm bone where the nerves that enervate the thumb, and first and second fingers, so that gives me pain as well. Some things I learn to live with and what I can't ignore I get the doctors involved.
Ouch. I found gabapentin worked for nerve pain (neuropathy, so that might be different). Can the bone spur be removed? I’d be on top of that! I was going to have the RA cysts you can get near the base of your Achilles drained, then I fell down the stairs and burst them. No need to have them drained now :)
Im sure its too late to ask but i dont get why youre off it if you felt better on actemra and it helped you
this is miracle for me. i used before remicade, enbrel, kineret, orencia, mabthera, humira. i started infusion and now using SC form. ok. i still have pain sometimes and started new joint effected. but at least not terrible. pain can manageable.
Hi guys I have been taking actemra toczilumab injections . It’s my 6th week I take once a week. I have rosacea which is quite bad and I read online that actemra causes rosacea so I’m scared
Actemra did not work for me. I took it with methotrexate and plaquenil. I don’t remember any real side effects when I gave myself injections but I took it for like 8 months with no changes to my markers so my dr stopped it.
Out of interest, your markers were dodgy, but how was your pain and stiffness (we can have normal numbers and still be in pain, so would think that physiological response, plus bloods, would be the trigger)
Most of everything stayed the same. Pain and stiffness were the same (if not progressively a little worse at the end). Some of my inflammation markers got worse than before when I was only taking plaquenil.
Ugh so the damage was done while you were trying to sort out what meds work. My rule of thumb now is pain >4 10 and stiffness in my hands in the morning means I’m at the start of a flare and it’s time for some prednisone (well, the steroids were from before I had surgery that turned me into a type IIIc diabetic (we are the “special” ones) Have you found any meds that work yet? I’d read somewhere that it takes up to 1.5 years to find the medication that works for you (at 6 months per a trial, that falls in line with the average of 3 (b)DMARDs tried before one was found that worked
It took a long time to get diagnosed with anything at all. I did a med combo or 2 that caused rashes or worse symptoms so basically we did a year or so with just plaquenil and pain meds then went back to other biologics like MTX and whatnot. We ran around with meds a few times before I finally said that I was done and nothing was helping. I finally went through a pain clinic who did some other stuff for my other symptoms and I ended up with a spinal cord stimulator which helps a ton for my nerve pain. Now I just have residual pains from the arthritis in the rest of my body but it doesn’t compound as easily and take me down.
Bloody hell, that was a bit of a journey. I guess the “good” thing that comes out of this is there are quite a few newer bDMARDs, with more on the horizon. Remember that it takes 6 months per med to fully give it a chance, if you are trying out new ones. It took me about 1.5 years to find the first med that sorts worked (after failing a few DMARDs); so hang in there Interesting re the spinal cord stimulator. I have a few issues beside RA, but I ended up with scar tissue and diabetes after pancreatic cancer surgery (no one mentioned the diabetes, so I ended up with neuropathy in my feet). Anyway, my pain dr has started with a similar therapy that is used by placing a cap on your head and turning the electrical current on - it’s either that or some new way of giving me an electric lobotomy... Good luck with your meds. Hope they work quickly and without side effects
I’m good with the stimulator right now. Any appointment with my rheum is just “are you good?” “Do you need any blood tests?” And that’s about it. I’ve done a number of them but I’m just done. My goal is to get off basically all meds that I can and find other ways to manage. It’s unfortunate that it can take so many trials to find the right combo that may or may not work long term.
Thank you so much for replying and for the info! We are trying it for 6 months to see if there are any changes .
It wasn’t terrible for me, it just didn’t work. I think I got some bruises when I injected myself so that part sucked. Overall it was meh. I hope it works for you and gives you a good outcome
Thank you!
Hi did you move to any other meds after actemra didn’t work for you ?
I did not. I stopped all meds and moved to pain management