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When to start titrating down

Polymyalgia Rheumatica (PMR) | Last Active: 2 days ago | Replies (13)

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@stonewheel

I appreciate the update. Sounds like everything is going well for you. Four months on Kevzara should be long enough for the full effect. I could not really tell if Actemra was working after 4 months because I still had aches and pains. I think you need to expect to have some pain as long as the pain is tolerable.

I had the mother of all headaches with trigeminal neuralgia but thankfully surgery stopped that pain. My pain was electrical and incapacitating where I could not speak in order to tell anyone what was wrong. The slightest thing could set it off. The ophthalmic (upper) branch of my trigeminal nerve was my problem. It supplied the sensation around my eye, my scalp, and my forehead near the temporal area so it was hard to know if I had GCA or not. Eventually a special type of MRI showed a neurosurgeon where the problem was. An ophthalmologist reassured me at every visit that there were no indications that I had GCA.
https://www.ninds.nih.gov/health-information/disorders/trigeminal-neuralgia
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My CRP and ESR were incredibly low after Actemra was started. My inflammation markers were so low that I asked my rheumatologist if they were too low. I never saw my inflammation markers that low before and my ESR and CRP are still very low. I read stuff that said inflammation markers aren't reliable on IL-6 inhibitors like Kevzara . I think ESR and CRP being low is a good sign Kevzara is working and if they aren't low it may indicate Kevzara isn't working for some reason.

I don't know anything about vitamin D3 other than rheumatolgists seem to love it. I had a mid-range normal level once and my rheumatologist wanted me to take more vitamin D3 and wanted my level to be in the higher part of the normal range.

The guy pictured in the following link could be me working on my vitamin D level.
https://www.medicalnewstoday.com/articles/normal-vitamin-d-levels

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Replies to "@stonewheel I appreciate the update. Sounds like everything is going well for you. Four months on..."

@dadcue
“I never saw my inflammation markers that low before and my ESR and CRP are still very low. I read stuff that said inflammation markers aren't reliable on IL-6 inhibitors like Kevzara . I think ESR and CRP being low is a good sign Kevzara is working and if they aren't low it may indicate Kevzara isn't working for some reason.”

Yes! That’s me.

Vit D, my rheumatologist started me on 50,000IU, once per week. The first dose wiped me out for the whole next day. My PCP said he’d just come from a conference about D and the conclusion was 5,000IU daily was more tolerable and was just as effective. So, I spoke with my rheumatologist about it and she said yes, to do that.
I’m going to back off a bit, now that summer is here.
Two days without D and I think my scalp is feeling better. I could be wishful thinking, but I’ll take that!

@dadcue
I think I remember you mentioning that you had no sensory loss after your TN surgery?