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@dadcue
Hi Mike.
Thanks for asking.
I’ve been on Kevzara for 4 months. Prednisone is down to 4.5mg/day, this week. SED & CRP staying low. All others are good or acceptable as to be expected…
Tender scalp increased so we (Rheumatologist & I) decided to have an ultrasound done. The results were negative for GCA.
Because Kevzara can result in a false negative we decided that a temporal biopsy would be more definitive. The biopsy also reported negative for GCA.
We don’t know why I have the tender scalp pain.
I’m wondering if too much of the supplement,
5,800IU of D3 per day could be causing it. I’ve read that it can.
With the warm weather, I am outside a lot, so I should be able to reduce it by half, or more. Coincidentally, I plan to message my rheumatologist today for her advice, since she prescribed the D3. I’m thinking that she will do blood tests June 2, (as scheduled) and then adjust if required.
Other than the tender scalp, the pain, stiffness and tingling in my hands and fingers increased over the past month. They feel better yesterday and today after not using them much and I expect them to return to normal. I’ve had EMG/NCS testing and that’s not it. Also, I had wrist injections last week to see if carpal tunnel was causing the pain, stiffness and tingling, but that’s not it either. Rheumatologist recommended Voltaren but it did not help and felt strange. Strange enough to stop it after a couple of days.
Ice water soaking of my hands daily for 10 minutes in the evening before bedtime seems to help.
My Prednisone taper plan has stayed on pace, and I hope to be off by the end of October. I’m at 4.5mg/day now.
Sometimes I wonder if I could taper more rapidly, as the classical PMR spots (hips, back, neck and shoulders) have not bothered me since December, 6 months ago, shortly after starting Prednisone. Better safe than sorry?
I don’t want to flare, but I don’t want to prolong delaying my adrenal restart.
I should be in “the zone” now, or soon.
I hope that was a complete answer without being too lengthy while staying on thread topic (sort of). Thanks again for asking. I always appreciate your feedback Mike and I hope you’re doing well.
Replies to "@dadcue Hi Mike. Thanks for asking. I’ve been on Kevzara for 4 months. Prednisone is down..."
@stonewheel This is from the Kevzara website -
"Kevzara suppresses IL‑6 signaling, which lowers immune defenses.
Infections of the skin or hair follicles (folliculitis, cellulitis) can sometimes present as:
Localized scalp tenderness
Warmth or sensitivity"
This might be what you are experiencing. Possibly not a full blown infection, just a low grade. Just a thought, especially if the pain was not near the temples.
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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