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Still Struggling with that last mile on the path to 0 mg
After two months on 1/2mg of prednisone, various setbacks, and revisiting PT, I started to feel quite a bit of improvement, which led me to the next step.
My doctor told me to just take my remaining pills on days when I have physical therapy, which is currently three times a week. I will be at 0 mg in a little over 2 weeks,
It's only been a couple of weeks since this possibly final taper started. Last week I had a lot of pain, especially on the days after PT with no meds.
A few days ago I tried taking extra strength tylenol after an especially uncomfortable day, at 9 or 10 PM. The next morning I could still tell where the pain was, but it was muted and not especially bothersome. It took till later in the afternoon to start feeling really uncomfortable again.
I have not taken anything else in the last 2 days, and felt real improvement yesterday and this morning. At least until going food shopping this afternoon and lugging around too heavy bags.
Despite feeling general improvement, My left upper arm is stiff and difficult to lift first thing in the morning, but loosens up when I do my PT exercises. I need to stretch it periodically during the day My right arm is more likely to have surprise pains when I move, but has good range of motion all the time.
I gave up on curcumin, which seemed effective, because of loose bowel and diarrhea issues. Though I think there are other dietary triggers that contribute to the problem. I gave up on Ginger due to stomach pains.
I have other issues that may just be old injuries or osteoarthritis.
I'm hoping PT can help them too eventually. Walking and Tai Chi help everything.
Anyway, what do people think about incorporating some tylenol into my tool box on an as needed basis? I'm waiting to see if I can continue to improve without it. If I can't get through this taper I believe my doctor will want me to consult a rheumatologist in order to have access to heavier duty meds.
Anyway, I would love to hear how other people have navigated this phase .
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I started at 60mg (due to GCA confirmed through temporal biopsies) and it took me 1 1/2 years to taper off prednisone and another six months after that to get off Actemra.
I could not sleep - had to work with my doctor to put together a sleep cocktail that worked - CBD/THC 1:1, 5 milligram Valium, 50 mg Trazadone. That usually worked.
My biggest negative effect was I lost 7% bone density (even though I took one shot of Reclast as I started Pred/Actemra.
Also, tremendous fatigue. And yes, I had those red blotches appearing on arms and legs and sometimes scraped skin unknowingly and it would bleed. But I just got used to that happening.
I had some ocular migraines (a rather psychedelics image appearing in the eyes that one lasted a few Minutes (see example photos) Ophthalmologist confirmed not GCA related and not a serious issue.
I was also super sick w horrible GI issues and couldn't eat. Had to try to force myself to eat. Lost 30lbs. Finally after two years that subsided - but lots of supplements working my integrative doctors.
Body was completely deconditioned and has taken me years (working w PT) to start to build back up in strength and stamina.
Was off Pred for three years - and now had a relapse, back on Pred, started at 10mg two months ago and now am alternating 5/6mg. Tapering very slowly. Super hungry but trying to control myself!!!
My next Dexa scan is Sept 5. Not looking forward to it ☹️
I am requesting a transfer to a new rheumatologist since I don't feel my current one "gets me". He wants me on a very aggressive taper and given my history I know that is not
right. Then he says "you need to get off prednisone as quickly as possible". Duh .... really?
Anyways - I am fortunate that I don't have pain now and am starting to build up my exercise program and walking.
Oh yeah, I also broke a bone in my hand - had to have surgery, and tore my meniscus when I attempted to try a gym class!!! Had arthroscopic surgery last October but knee still has problems So now looking at knee replacement. All that could just be aging (I am 70).
Anyways - gratefully, I am a naturally positive person. My meditation and Buddhist teachings have helped immeasurably.
Good luck to everyone!!! 🩷
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3 ReactionsWhy wasn't Actemra restarted?
People tend to have relapses after Actemra is discontinued but not always. My understanding is that remission can be achieved again when Actemra is restarted.
I have symptoms that return when Actemra is "interrupted" but I have never completely stopped Actemra. I want to try stopping Actemra but my rheumatologist doesn't think it would be wise.
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2 ReactionsHmmmm. Interesting. I asked current rheumatologist about restarting Actemra but he said he didn't want to put me on any other strong medications as long as Pred was working.
Hopefully when I see new
Doctor (hope hope) I will be able to bring this up with him.
Thanks for the question!!!
The UK is a good case study for what happens when Actemra is stopped. In the UK, treatment of GCA with Actemra is limited to one year.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11079613/
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I pity the patients in the UK. Generally, the belief is if Prednisone is working don't even consider Actemra. This narrative is preached no matter how long a patient stays on prednisone.
My rheumatologist believes long term Actemra is safer for me than long term Prednisone. My personal experience with long term Prednisone compared to long term Actemra leads me to believe the same... at least for now.
"... there is accumulating evidence, from TOC STOP and other observational studies from around the world [4, 6, 7] that 1 year of treatment is for a substantial proportion of patients not ‘enough to sustain remission in the longer term’ as was originally assumed."
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1 ReactionI agree with everything you say in your post. Since many people with PMR have to be treated for several years, it makes sense that people with GCA also need to be treated for several years, since many researchers now believe that PMR and GCA are on a spectrum of the same disease.
I just finished my first year on Actemra, and my rheumatologist told me that I'll probably be on it for several more years to protect against relapses.
I strongly prefer Actemra to prednisone due to the lack of side effects for Actemra. I felt like I had completely recovered from prednisone once I got down to 2 mg per day, because I couldn't imagine feeling better. But I stopped prednisone a week ago, and I've been very surprised that my sleep is consistently deeper and longer, plus I'm dreaming much more. So even at 1 mg per day prednisone was affecting my sleep.
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2 ReactionsI appreciate your positive feedback. The following is the TOC STOP abstract.
https://pubmed.ncbi.nlm.nih.gov/37952183/
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I'm glad the experts in the UK are evaluating the merits of Actemra compared to Prednisone. I was dismissed for sharing my personal experience years ago.
In my experience with Actemra, the biggest advantage of Actemra is that it doesn't suppress my adrenal function. I hope things continue to improve for you.
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1 ReactionThanks. I'm feeling very good now. In a few days I have the last appointment with my ophthalmologist to deal with GCA. Since I've gotten off of prednisone, she says after this appointment she will only need to see me yearly for a routine eye exam. And I have one more rheumatologist appointment in a month to make sure there aren't any issues from getting off prednisone. After that appointment I'll have less frequent exams. My rheumatology chart says I'm in clinical remission. That feels strange, but nice.
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1 ReactionThis is an afterthought that I will repost. I just noticed the following in the above abstract:
"During the coronavirus disease 2019 (COVID-19) pandemic, some patients were allowed longer treatment."
Because of supply chain problems ... I couldn't get any Actemra for 6 months. It was unfortunate but I learned quickly what would happen if Actemra was stopped -- I needed 20 mg of Prednisone again. When Actemra was restarted, I tapered off Prednisone again in about a month.