I've posted before explaining all my AI conditions and the current treatment with CellCept, hydroxychloroquine, and Rituxan. As a side, I apparently developed a new AI condition too... now, I can't help but laugh after each visit . Anyway, my rheumatologist talked with me about what we will do if this round of Rituxan doesn't work; in large part because of fear of various permanent damage in the brain as well as increased pain and loss of movement. He said he would try Actemra (possibly in combination with something else). I've been reading a lot about it, and not to get overly nerdy, it is an antibody against the IL-6 receptor. However, IL-6 is released during exercise - especially during muscle contractions like when lifting weights, pilates, etc. It would seem that this would mitigate any benefits of exercise and possibly even induce exercise intolerance. Has anyone been on this medication and found it very difficult to exercise? If so, was there anything you did to overcome this?
Thanks so much for any thoughts!!!
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TiredNerd
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Sorry, none of those (or mine was a different brand) but they know what they’re doing when prescribing; if they knew that exercise (more rather than less) might be a factor, they’d check with you. However, your concerns could be better answered by enquiring of your Specialist.
Why do you think that an IL-6 antagonist would remove benefits of exercise? Yes, when you exercise your serum level of IL-6 rises but there are a huge number of other changes at a cellular level - endorphins, monocytes etc etc. And changes of whole body systems like blood pressure, respiratory system, lung function etc etc. So the benefits of exercise draw from all these things.
With us, it is likely that many of us have heightened levels of IL-6 anyway, so a reduction just brings us into a “normal” range. And even if we are not abnormally high to start with my guess (and it is a guess) is that something that stops your levels of IL-6 rising too much is possibly pretty minor in the overall picture of muscle behaviour and benefits of exercise.
I'm on tocilizumab and it has been utterly life changing. I've gone from being unable to dress myself or lift my leg over the lip of the shower tray to doing 2 advanced Pilates classes a week and averaging about 14000 steps per day!
I’ve been on it a month and walk my dogs for an hour everyday. Today I went mad doing housework for about 3 hours so I’ve no issues. Not planning to run any marathons right enough. In fairness 2 weeks ago the hours walk did get us very far but got knee injected last week and still on lots of pred....and everything else but so far so good with the Actemera.
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. Anyway, my rheumatologist talked with me about what we will do if this round of Rituxan doesn't work; in large part because of fear of various permanent damage in the brain as well as increased pain and loss of movement. He said he would try Actemra (possibly in combination with something else). I've been reading a lot about it, and not to get overly nerdy, it is an antibody against the IL-6 receptor. However, IL-6 is released during exercise - especially during muscle contractions like when lifting weights, pilates, etc. It would seem that this would mitigate any benefits of exercise and possibly even induce exercise intolerance. Has anyone been on this medication and found it very difficult to exercise? If so, was there anything you did to overcome this?
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