I will likely be on Actemra in a week, providing OK tests. Sofar been on only pred in moderate dose (strated at 80 due to eye involvement and tapered down to 2 in about a year. Then up a bit to 5-10 but with unstable bloodmarkers, and now at 20 after a flare with eye involvement again) and a little cautious about Actemra, and possible side effects. The majority however seems to have had good experience with it, so it might be the right choice. Guess my options would be to try and taper slower from 20 and if that does not work add Actemra, but my reumy thinks I should try it now. Any opinions/experiences? As someone said pred is no cure but ”the devil you know”. But once the vision is involved there are other considerations, I really have no other symtoms perhaps that is why I am a little hesitant
Also, was going through som older posts, 3-4 years ago, and checked the OPs ”status”, and seems like many that posted 3/4 years ago are no longer active and/or have not updated their status. Is that due to recovery mostly or what are your thoughts?
Best to all
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Gilmor
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Down to 2mg in a year is bonkers and I’m not surprised you flared so I’d take from that not to be disheartened. I wouldn’t see that as strong evidence of refractory disease and a definite need of Actemra. However, for some it is a game changer. If I was really unhappy about Actemra after looking into it I’d say I want a much slower descent from where I felt ok before. You’ll get more objective replies on Actemra I’m sure, so sit tight.
I took 3.5 years to get to zero from 60mg with no flare ups doing it at my speed and have been off Pred since Aug 2020.
Thanks for the input, I will discuss with my reumy (also have another for a 2nd opinion, he also favoured Actemra at this stage). Since I had no warnings from symtoms with the latest incident a little scary/nasty, makes me believe I might have the ”occult” form. Perhaps that is why they want to test Actemra at this stage
The rapid first year was unfortunate. I guess that since you are where you are now plus the worry of an occult form, plus two opinions that you should have Actemra, it may be that it is an option worth trying. It is the path of least resistance for sure. If you do decide to do it with Pred on a slower plan and you don’t have support, you’ll need to have a strong mind. I had a lot of negativity to my own plan and it was very upsetting even though I knew I was doing well and had a strong gut feeling it was right for me.
In the end it is an educated guess I think; they don’t know that the main driver of your inflammation is solely Interleukin-6 for sure but it might be. You don’t know if it will be a positive game changer for you or bring bad side effects for no return . The one good thing about Actemra is that you can just stop it if you don’t like it.
AA remains in the body for much longer than that - the last look was after 15 years I think but the terminal halflife of alendronate once sequestered in the bone is estimated at 10+ year s which means to be out of the body altogether would be over 50 years ...
It doesn't matter what version of GCA you have - the Actemra has no effect all all on the actual GCA disease process, that will continue in the background. As I understand it. Actemra occupies the receptors via which the IL-6 works so it can't cause inflammation. The hope is that the disease process will die down and stop but that still takes time.
If you tap FAQs below your post and then Tocilizumab, you will find lots of discussion on it. I took it for about a year quite successfully but gave up due to pain in my lower abdomen , diahorrea and occasional constipation. Giving it up did not clear up those symptoms. Colonoscopies have shown diverticula disease that is a no no for Actemra. Apart from this at the tail end of my period on Tocilizumab, it was helpful in enabling me to taper steadily from 40 mgs to 10 mgs of Pred quite quickly. Alas it is not a cure. My jury is out. My Rheumatologist has not linked my current gastric troubles with my medication. I would try it , if I had my time over again.
Thanks for your opinion, and glad that it at least let you taper down your dose. Diverticula, if not common, is probably my worst concern re side effects
It is perfectly possible that Pred over a 7 year period had started the damage - it is pretty harsh. I did not take stomach protection just food initially and then I took Entric coated Pred. So take care of your digestive system whatever you do. I was told that most older people have diverticulosis to some degree, it is when it gets infected that it really hurts. Good luck! Let us know how you get on.
Yes for Pred 4 me since 2005. Heart probs. Diverticulitis and now diagnosed with long term Ulcerative colitis. Very painful and debilitating symptoms rapid weight loss , not being able 2 go out, etc enjoy life till flare over. Long term steroid use suspected. Not allowed biologics because of bowel probs. Hope you fare better in the long run.
I have been on Actemra for nearly a year but for PMR which I have had for 18 years altogether and it is severely refractory. It has allowed me to get to a much lower dose of pred, I was on nearly 20 for much of the time over Covid and while my husband was terminally ill and now am down into single figures. However, I recently tried 6mg, 7mg seemed to have been OK, but 6 definitely wasn't.
Actemra will get half of patients off pred in a year or so - and that may or may not last, At present the opinion seems to be you need it for 3 years at least. Unfortunately in the UK it is limited to 1 year - doesn't apply to me in Italy, I don't know how Sweden views it. However, as I say it only gets half of patients entirely off pred, there are 3 different mechanisms for the inflammation in GCA, Actemra only works for one, the IL-6 cytokine part, and if the other 2 are involved in your GCA you will still need some pred for that.
Prescription in Sweden is pretty generous compared with US/UK i believe, the doc said to expect at least 1,5 year. Will probably try Actemra, in one recent study seems to be effective for further issues re vision. I guess you can just stop if the side effects are too bad, and hopefully not irreversible
Hi I have had no problems with actemera just the difficulty getting it long term in the uk . There was one chap on here I think in Germany and he was prescribed actemera from the start a long side steroids and seemed to have good results. I definitely think it would have helped me to have got it sooner
I’ve had Actemra for a year now and it has helped get from 60mgs to 9 mgs Pred . No Ill effects so far except I’ve noticed my cholesterol has increased.
Rheumatologist said I can have funding for up to 5 years from the beginning of the illness…. So they count the years you aren’t on Actemra within those five years . Then they expect the illness to have burned out, apparently.
Here’s hoping!! I started with PMR, then GCA and now have Large Vessel Vasculitis
I have been Actemra for approx 4 years now. It was a game changer for me. At that point had been on Pred for 7 years for PMR then later GCA. Couldn’t get below 20mg. About 3 months after starting weekly injections I felt much better. It took a year to wean off Pred as once in lower doses had to nudge the adrenals awake. So have been 3 years on just Actemra. No side effects other than elevated cholesterol (not enough to require statin tho). Did try stopping it a year ago and symptoms returned so back on with a short burst of Pred to bridge. Currently at every other week self injections. Also of note: I’ve never taken AA. Dexa scan fine for age with supplements and exercise. Am in the US.
I am in the UK and had 2 years on TCZ (extended by one year during the pandemic). It suited me well and allowed me to reduce the pred to zero. However, it is not a 'cure', as the inflammation levels rose again after 7 months, so I am back on pred, with no chance of any more TCZ as I have had my 'ration' from the NHS.
I had no real problems with it - regular monitoring showed an occasional fall in neutrophils, which responded to pausing a couple of weeks' doses. My cholesterol rose a bit, but has fallen since I've stopped TCZ.
I felt so well on it that I would go back on it tomorrow if the funding allowed! If you are allowed only 1.5 years, the discussion to have is at what stage should you start it. No answer to that question!
I’ve been on Actemra for 15 months. It has been a game changer for me. I felt that prednisone was slowly killing me. Once I started Actemra which was after 5 months on prednisone alone, I was able to get off prednisone entirely by 7 months. The only side effect I have is higher cholesterol. I don’t know when I’ll be able to stop Actemra. I’m just hoping that by the time I do GCA will have burned itself out but who knows
I have also been on it for 15 months, for GCA,LVV,PMR. Before that, I could never get below 15mg of pred, and I had a lot of side effects. However, the side effects from Actemra have not been a worry. The first 2 times I felt strange about an hour afterwards, but it soon passed. A few months ago my neutrophil level dropped - a bad time to get Covid! - and I had to stop it for 2 weeks, but then the neurophils picked up again. As you have said, you can stop it as soon as there are any problems.
Yesterday was my first day without pred🤞 and I have Actemra to thank for it.
As per the Actemra info. contained with the syringe, Actemra does carry with it the risk of "serious infections leading to hospitalization or death including TB, bacterial, invasive fungal, viral, and other opportunistic infections have occurred in patients receiving Actemra." I mention this not to discourage trying it, I take it myself, but because I have had lung/respiratory problems while on Actemra, which we're still trying to figure out were because of infection or a GCA flare. I've posted before about this and hope to have more answers in about a eek when I am finally able to meet with my rheumy face to face. You can read my story in my profile if you're curious. Good luck!
PMR 20 plus years, GCA 10 plus years. Misdiagnosed for a long time, so rheumy says I will probably always have it. Our discussions now revolve around the statement: "quality of life". Actemra has given me a much improved quality of life, less pain, prednisone down to 5mg. Rheumy says will probably need 5mg for the rest of my life. Actemra infusions for 18 months . Prior to that I did the shots. When I turned 65 Medicare in the US stopped paying for the shots. Medicare will only pay for infusion. I prefer infusion because during the monthly infusion they do a monthly blood draw and really keep a close eye on things Like others I have high cholesterol. I have high blood pressure, but not from Actemra. If I miss my Actemra infusion because of an infection, etc. BP does not go up or down. I have sleep apnea and that is causing high BP. I have Diverticulosis. I have so much scar tissue down there a colonoscopy is no longer doable at my local medical clinic. I was told I would need to go to a specialty hospital for a colonoscopy. I do Cologuard. Since I started Actemra Diverticulosis has improved. I no longer have lower left quadrant pain all of the time, only when I eat something stupid, i.e., popcorn. I am also a cancer survivor, having had endometrial cancer in 2004. So, according to all of the literature I should not be taking Actemra. I am 67 years of age and was in horrible pain, with debilitating fatigue prior to Actemra. My rheumy told me to not read the warnings on the internet and roll with it. I am glad I did. Rheumy keeps a very close eye on me, and I have greatly improved quality of life on Actemra. I know there is danger involved. There is danger with any drug that is this powerful. But, I was stuck between a rock and a hard place. From my experience the inflammation does way more damage than Actemra. I am no longer on a proton pump inhibitor for my stomach, my intestines have calmed down, and oddly enough, for the first time in 20 years I no longer have Plantar Fasciitis in both feet. People assume because Giant Cell Arteritis, once called Temporal Arteritis, is so named, it only exists in the temporal and eye region. This pair of illnesses are systemic. I spent years chasing symptoms down various illness rabbit holes, coming up frustrated time and time again. Eventually I learned all of it could be traced back to PMR/GCA. Do not let fear stop you from trying Actemra. For me it was a game changer.
Hello, I have been on Actemra since October of this year. When I started it I was at 5 mg of prednisone and really had no body pain except for my head in the right side. My eyes also bothered me. My eye issue caused a hospital visit and high dose injection of prednisone. I was kept on 60 mg for a short while reducing, in my opinion too fast. Well, I started my reduction a half mg at a time and I am happy to say I am at 2 1/2 now, still doing the injections once a month. I have no real pain, at times my shoulders bother me but once I am up moving around I seem to be okay. My doctor said I will be on Actemra for a year. I have had no real size affects except for have some bumps under my skin which can be cause by another condition I have. My hope is that I will very able to come off the Actemra after the year and be ok. All my markers are very low. Like others have said you can always stop it, to me I think it is better than being on high dose of prednisone. Best of luck. I hope this helps!
I have been on Actemra for about a year. I think it has allowed me to taper faster than I otherwise would have been able to without it (but who actually knows). Was at 40 mgs two years ago and at 8 mg today. Still tapering. I have had no problems with it, but it is hard to know because I do have side effects from what I THINK is the prednisone. But I won't know until off the pred. One thing to consider, that you may already know, is that it takes several months for the Actemra to be fully active and effective in your body. So, if you want to use it to help you taper, you will need the lead time to have it fully in your system to help. The risks scared me at first too, but as we all know, no medication for PMR or GCA is easy on our bodies. And, neither is being inactive or in a lot of pain. It's really a question of what option is least harmful to our bodies and that allows us to live as "normal" of a life as possible. Good luck to you!
Thanks everyone for all the insightful/helpful responses, really makes me less anxious about testing it. Although everyone is different, and the disease complex, your experiences makes me more positive
I have been on Actemra for 3 years now. I am down to 5 mg pred now. I did get down to 2.5, but had to go back up due to flares. The only problem I have with Actemra is feeling really tired the next day. No other symptoms. My suggestion is to get all the information you can in this group. I may not respond to a lot of posts, mostly because we have some very smart people on here that can give better advice then I ever could, but I read it everyday and it’s made this illness so much easier to get through. Good luck to you!
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