Exercise is so important

I left that forum because of conflicts. They weren't interested in Actemra and said it wasn't pertinent to them. They advocated for more Prednisone for "quality of life" and waiting for PMR to burn itself out. They said Actemra and a fast taper off prednisone was "breaking their rules" for treating PMR.

I actually liked the forum as a whole because people had many personal experiences to share. It was only a couple of "experts" who thought they knew everything because of taking prednisone forever.

I think people on the other forum need more encouragement to keep trying to exercise with PMR. Taking it too easy ... waiting for PMR to burn out while I took Prednisone for 12 years certainly didn't work for me.

After Actemra controlled PMR, the only reason I had to do a slow taper was waiting for my adrenals to recover. That took the better part of a year all by itself. My overwhelming fatigue took time to resolve but it has improved tremendously since I stopped taking prednisone.

I still have some limitations because of some pain. My physical therapist says I shouldn't "power through" everything if it hurts but she enjoys how hard I work.

I understand what you're saying about that group, but I've learned a lot there and I continue to learn. They have a lot of medical knowledge and stay up-to-date. I don't post much there, at least partly because of cultural differences, but also because I'm more interested in exercise and pushing my own limits even though I have GCA and PMR.

I agree that exercise has been very beneficial while being sick with and receiving treatment for GCA and PMR. It has helped me limit weight gain from the prednisone, and has also helped a lot with my mental clarity and mood. Plus I was able to maintain functional strength for everyday activities.

So far there hasn't been a lot of response from the other group ...

"I agree that exercise has been very beneficial while being sick with and receiving treatment for GCA and PMR. It has helped me limit weight gain from the prednisone, and has also helped a lot with my mental clarity and mood. Plus I was able to maintain functional strength for everyday activities."
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The experts of the other forum certainly don't stress exercise. They warned that "delayed onset muscle soreness (DOMS) was caused by PMR." DOMS is normal after exercise after a period of inactivity if you ask me.

"Delayed onset muscle soreness (DOMS) is the pain and stiffness felt in muscles after strenuous or unaccustomed exercise. It typically develops 24 to 72 hours after exercise, peaking around 48 hours."

Their advice would be more prednisone for DOMS so I'm not so sure the experts on that forum are medically sound. I mostly didn't like how they gave medical advice. They shouldn't claim to be experts and entitled to know things no medical expert would claim to know. Not that much is known about PMR/GCA because of the limited amount of research that is available for PMR/GCA.

Sorry for the rant. In any case ... I didn't need their advice to take it easy, avoid exercise and I should take more Prednisone for niggles of pain. I had the first part perfected without their advice but I didn't take more Prednisone for niggles.

I definitely experienced lots of muscle soreness over close to 50 years of running, and it wasn't due to PMR or GCA.

Same here!

For many of those 50 years, I had inflammatory arthritis where I took high doses of prednisone but I tapered off in a couple of weeks after every flare. I continued to jog and I routinely did 30 mile bicycle rides just for the fun of it. I didn't take prednisone for years like I did for PMR.

I don't know what was different about PMR except for the initial confusion caused by my prior medical history. There was a six month delay in starting prednisone for PMR until I said the pain was very similar but unlike any pain that I had ever experienced in the past. For inflammatory arthritis, long term treatment with Prednisone causes complications due to side effects. The side effects of Prednisone was the main reason for restricting Prednisone when it was thought I was having a flare of inflammatory arthritis.

After PMR was diagnosed, I needed to take prednisone for a long time. Maybe it was the combination of many things that made it so hard to stop Prednisone. My rheumatologist tried many things none of which worked out.

I don't blame anyone because PMR wasn't treated with a biologic until relatively recently. My rheumatologist finally said prednisone for the rest of my life would be a bad outcome. Actemra was called a last resort.

The primary expert on the other forum said I could take Prednisone safely for the rest of my life like she planned to do. When I left that forum, her rheumatologist in Italy started her on Actemra after she said doctors in the USA were breaking the rules. I wish I knew how her experience with Actemra turned out.

As far as I know she's still taking Actemra with no problems and also taking a relatively low dose of prednisone (~7 mg).

I guess people with PMR can take Kevzara now if their PMR is resistant to standard treatment with prednisone? Just out of curiosity I tried to price Actemra and Kevzara a few months ago for what they would cost without insurance or financial assistance. At that time it looked like Actemra cost $65,000 per year, and Kevzara was $100,000. I think Actemra has come down now to around 55k due to other forms of Tocilzumab becoming available.

Yes ... there are a couple of biosimilars to Actemra (tocilizumab). This is beneficial for people with GCA. The cost of Actemra should start to decrease because of the competition from lower cost biosimilars.

Actemra was FDA approved for GCA in 2017 and now the biosimilars are also approved for GCA the United States. I don't think anything except Prednisone is used very often in Europe because of the expense. I don't know which governing body approves the use of biologics in the EU. The UK withdrew from the EU so I don't know what the status there is.

"Actemra (tocilizumab) has several biosimilars, including TOFIDENCE (tocilizumab-bavi), TYENNE (tocilizumab-aazg), and AVTOZMA (tocilizumab-anoh). These biosimilars are intended to be therapeutic alternatives for treating conditions like rheumatoid arthritis and others for which Actemra is also indicated."
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The above allows me to be artificially intelligent. I can't rely on my own intelligence.

Kevzara was FDA approved for PMR 2023. Prior to 2023 it was also approved for several other autoimmune conditions. Kevzara isn't that new but newer than Actemra. There aren't any biosimilars to Kevzara because it is still under patent. Both Actemra and Kevzara are IL-6 blockers but they are not identical.

Since IL-6 was the primary cytokine implicated in PMR and GCA either biologic might work for both conditions. However, the FDA requires rigorous research before approval is granted.

For the time being, Actemra is only approved for GCA. Kevzara is only approved for PMR. If a person has both PMR and GCA, either biologic MAY work but there aren't any guarantees in medicine.

My rheumatologist had to seek authorization to get Actemra approved for me. I was diagnosed with refractory PMR. Part of reason for the approval he received was my inability to taper off Prednisone and because all other alternatives failed. Nobody wanted me on Prednisone for the rest of my life and no rules were broken.

I was started on Actemra in 2019 but now my rheumatologist says Kevzara is another option. He says other types of biologics are on the horizon that might work even better if Actemra stops working.

I had my first bout of DOMS a few months back while on Pred. I had realised it was time to use heavier weights so got on with it. Before PMR DOMS would hit me the next day but this time it was a few hours later, I was so happy that my body was behaving normally. I read this yesterday, Exercise has a dramatic anti depressive effect, it blunts the brain’s response to physical and emotional stress. So true. Stress is not good for the immune system so PMR would use it. As I can no longer run properly I do what I refer to as a Chug. Tell my dog we are going Chugging and her tail is non stop. She seems to sense I need her with me and how happy it makes me. So my now 15-16 minute miles are a joke to how I used to be but I get a high every time, even if we have to stop at more then one lamp post. My cortisol levels rise so I know my adrenal hormones are good. Now that would not happen with gentle exercise.

I use my Apple Watch in the pool, just have to press the thingie (my technical term) at end of session and it gets rid of any water in it. For some stupid reason I had it set on 20 metre pool instead of 25, that bugged me for days afterwards. I can not fault my watch, well apart from when it tries to talk to me and I end up swearing at it. Apple and Garmin are the best.

I was just looking at the Strava webpage, and I see that you can manually enter activities. There is a long list of activities you can choose from, including the vague one "workout". So you don't need any kind of smart device to use Strava if you want. You can just manually enter the activity type, duration, description, etc.