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When to start titrating down
Newly diagnosed PMR. ESR 74 and CRP 120. Started on 20mg prednisone 10 days ago. Had follow up blood work today. Won’t know results for a couple of days. Excruciating pain gone with just minor pain/stiffness in a.m. I know the ACR guidelines recommend lowering the dose after 2-4 weeks. Is 2 weeks too soon or should I wait 4 weeks for best results?
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Things to consider, age, exercise level, other health and meds.
Keep a journal of daily pain level, dose, exercise to help evaluate
My experience has been that….
Not more than 10% taper
Taper Timing is up to Dr.
this blog and myself seem to say……4 weeks….
Prednisone helps reduce the inflammation and PMR inflammation does not go away in a quick amt of time.
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4 ReactionsYour blood values are very high. My ESR was 54 and my CRP was 9 when I was diagnosed with GCA and PMR, I stayed at my beginning dose of 60 mg of prednisone for 6 weeks. I agree with @tweetypie13 that 4 weeks is better, It's better to be too slow as opposed to too fast. Tapering too fast can cause flares and adrenal issues at lower doses.
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2 ReactionsHi. Everyone is different, has different experiences, lab numbers, starting doses, maintenance doses, tapering time schedules, and even symptoms. I learned that here. We also have common symptoms, that’s how we know what we have, of course.
I learn here what possibilities are ahead and basic questions to ask my doctors, including the tapering off Prednisone, biotic, treatments and that I am not alone.
I wish you the very best.
Good luck.
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2 ReactionsHow is your treatment progressing?
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1 Reaction@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.
@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
@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!
@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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2 Reactions@jabrown0407
Thank you for finding and sharing that. That sounds like what I am experiencing. Not near or close to the temple areas.
Sensitive but not warm. (Glad it’s not warm.)
I had been all over their site but that didn’t register at the time. Thank you for a second set of eyes!!!
@dadcue
I think I remember you mentioning that you had no sensory loss after your TN surgery?