SheffieldJane3 years ago

Here in the U.K. GCA patients are allowed one year of Actemra. I gather that it is incredibly expensive. I have been on Pred for well over 4 years (PMR). I asked my Rheumatologist what happens after my one year is up. She said that interesting research is going on for the drug treatment of GCA. I still appear to need around 10 mgs of Pred or my symptoms creep back. I am as puzzled as you are. Do you feel that Actemra has helped you to reduce Pred.? Do you feel well on it?

luv2read in reply to SheffieldJane3 years ago

I'm not sure if it has or not. I've been on it for about a 1 1/2 years. I'm thinking that when I started it, I was probably on 30 mg of prednisone. I have been down to 5 mg for the last week and feel fine. Maybe a little more tired, but absolutely no symptoms of GCA or adrenal glands acting wonky. It has taken me so long to finally get here. I feel so good. Do you think I'm looking a gift horse in the mouth with questioning the life long pred/Actemra? I'm just so confused.

Reply (1)Report

SheffieldJane in reply to luv2read3 years ago

No not at all. I don’t really understand exactly what Actemra brings to the table. I feel pretty viral all the time but don’t have typical GCA symptoms unless I try to dip below 10 mgs Pred. and then it just tends to be a headache. I wonder if it confers protection against the harmful effects of unchecked inflammation. I had thought that I was almost out of the woods on 3 mgs of Pred before my GCA diagnosis. The potential side effects of Actemra sound pretty grim but doctors seem much more anxious about Pred side effects. I had developed steroid induced diabetes that has now normalised, high blood pressure, still a concern and small cataracts. All from Pred I imagine. 5 mgs is a fairly low dose, almost negligible for side effects and probably giving protection against a relapse. Nothing I have read suggests that Actemra is intended as a lifetime drug. I’d be interested to learn more.

Reply (0)Report

luv2read3 years ago

I was first told about Actemra when I was diagnosed with GCA back in November 2018. I was being seen at Mayo Clinic in Minneapolis. That's where I was told I had GCA. No one here in Cedar Rapids could figure out what was wrong with me. I was not your typical candidate for having it I suppose. I was told by the rheumatologist there, that Actemra was a new medication for helping you taper off prednisone quicker and easier. I was never under the impression that I had to stay on it forever. Nor was I told I would need to take pred for the rest of my life. My doctor here, whom I love, has always taken such great care of me. When I asked him about going off the Actemra and prednisone, he said i had the worst case of GCA he's ever seen. Although, I'm not exactly sure how many patients he treats for this. After I saw the eye doctor, and he questioned why I was still on prednisone (he didn't know anything about Actemra), I started to question my rheumatologist.

I'm looking for anything that I can find about why I have to stay on this, and I cannot find anything anywhere that gives me the impression that this is a life long situation of being on this for ever.

I thank you for your reply, and I really like that you asked about spacing out your Actemra injections. That will definitely be a question I ask!

Luciejc in reply to luv2read3 years ago

I too live in the USA and have GCA since 9/19. I started with 50 mg. of Prednisone. I also loved my doctor but but she refused to consider Actemra and I began questioning her tapering methods since I never had any relief of symptoms. Feb. of 2020 I began seeing a dr at Hospital of Special Surgery in NYC. She put me on Actemra immediately. I am getting my medication through the pharmaceutical company directly. COVID was just hitting and we did a virtual visit and later began going to her office at the hospital. Prednisone did not work for me. I am now on 4 mg of Methylpednisolone and weekly Actemra injections. The goal is to get off both. I see her every 3 months and have blood work taken. Some results are posted on HSS online portal within a few hours and the rest the next day. The Dr. and I communicate via portal. Her response is good, better than waiting for a dr.to call you back. Any info you need..just message me. Good luck to you! Jean

(I too love to read.)

Reply (3)Report

Chrisellie3 years ago

Hi. I am in Scotland but I am sure the drugs don’t know that. LolI had GCA, LVV, PMR , now with no drugs and no symptoms so far.

If you look at my profile it shows pred reduction rate along side weekly injections of Actemra/ Tocilizumab (as it’s called here). I am off both within a year and 4 months. Lucky maybe?

It may partly depend on how the infection is created in the body for Actemra to work, but I don’t understand why you are using both after this length of time without trying a very slow taper off Prednisolone .

Perhaps discuss with your medics?

Hope it works out well for you.

PMRproAmbassador3 years ago

I can only wonder how much your doctor profits from the Actemra! In the UK it is only approved for 1 year of treatment for GCA! It IS a new treatment - but not available to everyone, even in the USA. It all depends on the finance!

The clinical trials looked at various durations of treatment to achieve remission - starting at normal doses of pred for GCA and tapering according to a set protocol and monitoring for a return of symptoms. Clinical remission was achieved, patients stopped pred and then the injections and then they were monitored longer term to see how long remission lasted. Remission had been achieved after 52 weeks - but half of patients relapsed. It is fairly clear that there are 3 different underlying mechanisms for GCA and only one of them is controlled by Actemra so patients with one or both of the other two being involved are likely to need a low dose of pred ongoing as biologics are very specific in their action. And for some patients the effect on the production of IL-6 may be shorter than for others.

A very small study here in Italy thinks that longer term use of Actemra is safe and may prevent relapse - but the question is why do it as a blanket approach it is when half of patients appear to not need it.

academic.oup.com/rheumap/ar...

In the original study the injections were given once a week or once every 2 weeks - and the results were very similar. In that case, I would like to know why it is used every week if that isn't really needed. It also suggests to me that it would be possible to increase the time between injections and still maintain the clinical remission while reducing the incidence of adverse effects of the Actemra.

DorsetLadyPMRGCAuk volunteer3 years ago

Most people with GCA in UK aren’t on it for life.....although on diagnosis my consultant (Ophthamologist) told me - “2years at least, probably nearer 4, maybe for life”. Turned out to be 4.5 yrs - with no other drugs added!

PMR20113 years ago

I am also in the US. Had PMR for 6 yrs, when diagnosed with GCA of the large vessel type. A year into GCA started weekly Actemra. It worked well for me. Have been off Pred for just under a year and now biweekly injections. The goal is to eventually come off the Actemra too. I have played with lengthening time between doses, but two weeks seems best for me now. Have never heard anywhere that the approach is to stay on for life. I am lucky as My GCA mechanism seems all IL-6 mediated. Hence off Pred. Actemra blocks IL-6 sites in cells so our blood levels of IL-6 are very high because our body continues to produce (over produce?) it but it can’t bind and cause damage. You are right to question the plan. Best luck!

Jim-CJ3 years ago

Hi to All,My wife, GCA for 6 years, has been on Actemra for almost three years. She is at 3.5 prednisone and will be at 3 early next year. (Dead slow method). Currently using Actemra every 10 days. Will talk to her Dr about going to every other week. Eye sight holding the same after her original some loss. No side affects from Actemra and little to no symptoms of GCA. Maybe she can get off of Actemra, but right now it helps with COVID. So we just bite the expense bullet.

Jim & CJ

luv2read in reply to Jim-CJ3 years ago

Where did you hear that Actemra helps with COVID? I'm curious to know, because I thought my doctor would have mentioned something like that when I asked him about going off it.

Reply (0)Report

Jim-CJ in reply to luv2read3 years ago

Actually, we heard about Actemra helping with COVID on this site.

Reply (0)Report

Lauren1033 years ago

Are you taking Actemra injection? How often? I take 5 mg of prednisone daily and an injection of Actemra every week. I am currently tapering to 4.5 mg of prednisone. I have not been told that I will be on Actemra forever but, I have an appointment coming up and I will ask.

luv2read in reply to Lauren1033 years ago

I've been on Actemra for about 1 1/2 years and I'm at 5mg of prednisone. I do the injection once a week and I just tapered to 5 mgs of pred for a little over a week.

Reply (0)Report

Lauren103 in reply to luv2read3 years ago

You are doing very well, much better than I have been able to do. I was diagnosed with GCA and PMR 4 years ago. It has been a struggle getting to 4.5 mg. I have been taking Actemra injections for 2 1/2 years. At my last appointment, my doctor told me I could stay at 5 mg. of prednisone. He said that 5 mg was a small enough dose that would not be harmful long term. I decided to continue tapering. I just have to proceed slowly. I had symptoms of GCA /PMR for a least a year before I figured out what I had. I told my primary care doctor that I thought I had GCA; my blood work told him that something was up. It’s been a long haul. I also take Fosamax weekly for my bones. Additionally, I take 30 mg of Nortryptiline daily. The Nortryptiline was added because I would get these stress headaches. Things like not being able to find my keys, running late for an appointment- almost anything would trigger a headache right in my left temple. It would feel just like a GCA headache but I had almost no inflammation shown in my blood work- the Nortryptiline helps but it is one more thing if you know what I mean. My next appointment is in early December; I will ask him about the amount of time I will need to continue with Actemra. I have not had many problems taking it; I bruise easily so I try to be careful. I am going to ask him if I can start taking my injections every 10 days. I’ll see what he says and I will let you know how I make out. By the way, I live in the U.S.

Reply (0)Report

luv2read in reply to Lauren1033 years ago

Best of luck to you. I know that I am lucky that the Actemra and pred are working for me. I have had no side effects from the Actemra except tiredness. Just kind of blind-sided that it's a life long thing.

Reply (0)Report

Lauren103 in reply to luv2read3 years ago

I am going to ask about the Actemra and I will let you know what he says. I feel the same way that you do. The thought of taking it forever is not great. In the meantime, it is really helpful to talk to someone taking the same meds that I do. Are you taking anything to help preserve your bone density? Take care of yourself and I will be back in touch.

Reply (0)Report

luv2read in reply to Lauren1033 years ago

I take fosamax for my bones and have a bone scan every couple of years. So far so good on that route. I appreciate you asking your doctor about Actemra.

I'm sorry that you are struggling with tapering. I did too when I tried to get to five mgs. My doctor would put me back on 7 mgs then I would start a super slow decrease. Again, so far so good.

I never experienced any headaches. At the very beginning I had jaw pain and ended up at the dentist because I thought it was a tooth issue. It was a good six months after that, that I was diagnosed . No eye issues what so ever. I did end up having a biopsy done, but that was well after the fact of my diagnosis. My main symptoms were extreme tiredness, a low grade fever, dizziness and weight loss. I'll never forget that during this time, my husband had foot surgery and was pretty much couch bound. I was lying on the other couch and it was close to dinner. I knew we had to eat, but I was so exhausted, I didn't think I could get up, climb the stairs, make something and then clean up. We both ended up going to bed hungry. That night just sticks in my mind, because I have never ever felt that exhausted before. I knew something was up, but no-one could figure out what. I totally get the long haul comment! I wish you the best of luck and reach out anytime to share stories or just chat.

Best wishes from Iowa!

Reply (0)Report

Chrisellie3 years ago

No protocol at all, once I dropped to 0 pred I just carried on with the injections. It was a nervy time but all went well. So far all seems ok, I know 50% can relapse and the injections would restart but my Rheumatologist has only had 1 person relapse so I am very hopeful. How long have you been on Actemra? I don’t know much about uveitis, is it affecting the back of the eye and has Actemra helped?

luv2read3 years ago

I'd love to talk with you, although i'm not sure how to go about doing that without posting my phone number???? It sounds like you could maybe answer some questions since you are in the medical field. If anyone out there knows of a way to get in touch with someone on here without posting phone numbers, I'd would appreciate it.

GO HAWKS!!!

😀

Chrisellie3 years ago

My you have really had problems with your eyes. I wish you the very best that all settles and doesn’t return in any way. Take care and stay safe.

PMRproAmbassador3 years ago

I think it was here in Italy where they probably tried it very early that they said they monitored IL-6 levels from admission - so they were selective who they used it for.