My inflammation is a stubborn arse. I was at 19 on 20mg and Dr told me to taper. I got to 10 mg and my marker went to 34. Now he is pushing Actemra, although I’ve had cancer, and I have diverticulosis.
My ESR has always been normal. I’ve had 2 positive ANA tests as well.
It’s so weird that as soon as I got to 10 mg, 3/4 of my hair fell out in 2 months, and my scalp started burning??
I don’t know what to do….scared to death of Actemra.
Like you, I had and have a very stubborn case of GCA. Back in 2019 I was placed on 125mg of pred per day to protect my right eye and the stubborn blood readings. Actemra was very new then and not offered because I too was a two-time cancer survivor and had diverticulitis. But, by October the steroids were causing problems with other meds and I was put on Actemra with a reduction to 80 mg.
Presently, I'm still tapering, on 8 mg, but will stop at 5 and stay on that for keeps. I can make no recommendation to you regarding the Actemra...but I never had any issues or side effects. Sometimes I'd wonder what it was really doing...then I'd say, 'well, it isn't hurting you.' So I've been on Actemra for over five years and I'm sure my doctor will keep me on it while I have this view of the daisies. My best to you💞
Oh my…. I thought there was a 2 year limit. My body is just so quirky when it comes to medicine. So I’m like do I stay on the prednisone with its side effects, or try Actemra that could bump me off in one go?
My insurance will only pay for the infusions, not the injections. Which is what I would prefer because if I am allergic to it, I could just stop injecting myself. But the infusion stays in your body for some time…
I've been on Actemra injections for 7 months with no side effects. It has allowed me to taper the prednisone to 6 mg per day so far with no issues.
I’ve been on weekly Actemra injections for 5 months and it has allowed me to taper to 2mg and given me a lot more energy. It took about 10 weeks to kick in as did the 2 issues I have with it now.
It has given me some stomach discomfort and constipation which they are monitoring so I would say you have to watch your diet and eat v healthy with it if you’ve already got diverticulitis. For example I noticed at Christmas my stomach got worse after overindulging.
Also it’s lowering my white blood cells and neutrophils more than they’d like so may have to move to 3 weekly injections.
It’s really helping my PMR - must be the IL-6 type - so I’m trying to keep it going.
So I would advise trying it but understanding that symptoms might not kick in immediately on it - or you might be fine as many on forum are.
I had Actemra for a year and I never felt better (since I was diagnosed with GCA). I had no side effects. I too am allergic or intolerant to lots of medication.
Prior to my hair loss, my scalp would burn, feel hot and painful to touch. This would occur in patches and then that area would shed. I too lost most of my hair. I don’t understand it, but think it had something to do with the steroid reduction. I only had two Actemra infusions. My hair is coming back in and is very short but thick. I started taking WEEM which I got on Amazon for my hair. Good luck. I’m so sorry you are going through this.
I have been having Actemra injections for 3 1/2 years; no obvious side effects. Is it just the possibility of allergy that worries you? Presumably the infusion will be given in a hospital where any allergic reaction could be dealt with. If the worry is too great, would be possible to self-fund a box of 4 injections as a trial of Actemra?
I have been on Actemra infusions for over a year with no side effects. I also have a complicated medical history as I have MS and fibromuscular dysplasia but the Actemra has not affected either of these. The infusions are easy to take at an infusion clinic. They have allowed me to reduce from 60 mg to 8 mg. I did have to stop the infusions for several months after I had pneumonia and sepsis but there were no problems when I started up again. the black box warnings on any medication are terrifying! One of the warnings on Actemra relates to MS but I have had no problems at all. I am assuming your doctor is aware of all your medical problems and has taken those into account. Can you have a conversation with the doctor about your concerns so he can assure you that he knows about them as you don’t want to go into something if you are terrified about doing it. Good luck. I hope Actemra will help you as it has helped many of us.
I also have been on Actemra for 3 years with no side effects. And I was able to taper off Pred completely for 7 months, then had a flare (back on both at present). Felt great on the Actemra (which I definitely didn’t on Pred!). The good news with Actemra is, if you have side effects you can just stop it, you don’t have to taper it.
In regards to the hair falling out, I experienced that when my disease was active or flaring.
It’s a tough and very individual decision, however, consider what awful warnings would be on the Pred bottle if it was a new drug just coming out. 🙃
however, consider what awful warnings would be on the Pred bottle if it was a new drug just coming out. 🙃
Guess you’ve never read the patient information leaflet in the UK packets then !
yes I get that ….fought taking prednisone for two years….☹️
The problem is in this litigation era every conceivable side effect has to be listed by the manufacturers - makes very scary reading..
Yeah I’ve decided to do the Actemra. The other problem is …I went along having no issues for so long, and then I got hit between the eyes by a baseball bat called GCA, and I am having trouble dealing with it. I’m still in shock three years later , especially with the new hair fall. Anyway…. I hope the camera works!!
Camera? Guess predictive text didn’t like Actemera…. 😊.. hope it works too…
Yes dumb phone
Not sayin' nuffink - always happening to me... just ask PMRpro - she seems to be my "unofficial" proofreader... 😉
Lol
Diarrhea while weaning pred and on actemra
Actemra and reducing prednisone
Tapering Pred on Actemra Feeling Bad @4Mg... Normal?
