When to start titrating down

Posted by villager @villager, Jan 21 8:52pm

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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stonewheel | @stonewheel | 3 days ago

@villager
I hope you’re ok.
What did you and your doctor(s) decide? And, how’s that working for you?

momac59 | @momac59 | 2 days ago

Just got out of 2 weeks in Mayo due to autoimmune FIRESTORM!! Ive had Lupus for 30 years (67 years old)but the brand new one that git me to the ER was GCA & PMR. Those are alotmore intense for sure! 2 other Er’s at different hospitals sent me home after 8 hours not being able to figure out what was going on with me. But Mayo got it right & said we ate admitting you & keeping you until we figure it out.
I had a CRP of 266 sed rate of 74. Its a wonder I didn’t stroke out! My eyesight has been affected a bit in one eye but Opthamologist will deal with that when I am tapered from high doses of Prednisone.
My symptoms presented as extreme fatigue, loss of appetite, scalp tenderness, headaches, night sweats, fevers, incredible hip pain for 6 weeks getting worse every day.
Ultrasound or other tests did not show GCA at first so they did temporal artery biopsy. Funny, but the left side where my eye involvement is & where pain was worse was negative but right side positive.
While in hospital, I was on very high doses of IV steroids. As I was responding to treatment Dr. tried to take me off IV & put me on 80 mg of oral prednisone but I flared right away. So they gave me an IV of Actmera & that did it for me. Wad able to taper to 60mg of oral prednisone & could then go home.
I am now SLOWLY tapering down by 10 mg. every 2 weeks.
Better not to rush it. I’m gea few symptoms but all very mild & am keeping a journal of them for my Rheumatologist where next appointment we will talk about eventually getting to Actmera. I have diabetes so Prednisone is doing a number on my blood sugar!
Hope my sharing can help anyone dealing with these issues. Good healing and good health to all!

Mike | @dadcue | 2 days ago

In reply to @stonewheel "@dadcue I think I remember you mentioning that you had no sensory loss after your TN..." + (show)

@stonewheel

Microvascular decompression (MVD) surgery has the best chance of relieving the pain of trigeminal neuralgia (TN) without causing any facial numbness.
https://www.facepain.org/managing-facial-pain/treatments/mvd/
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I was surprised when I woke up from anesthesia and the entire left side of my face and head was numb. I thought something had gone wrong until the surgeon said the surgery was more complicated and took longer than expected. The surgeon explained that he did the best he could under the circumstances.

I remember googling the problem that the surgeon found about 15 years ago. It was the first time and the only time that Google had no information on the subject. I asked the surgeon how the problem happened and his answer was that I had to "ask God."

The left side of my face is still numb. The only sensation I have is a tingling sensation that is not normal and sometimes is very uncomfortable but not painful. I count my blessings that my face is not electrified anymore.