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GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)

Polymyalgia Rheumatica (PMR) | Last Active: Oct 25 10:20am | Replies (277)
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@dadcue

Thank-you for the update. Sounds like you are making progress with tapering prednisone.

I developed peripheral neuropathy within a year after PMR was diagnosed. I wasn't diabetic and I'm still not diabetic despite many years of prednisone use.

Don't do what I did in regard to the peripheral neuropathy.. I actually told my primary care doctor that the numbness and tingling in my feet was "the least of my worry because it didn't hurt." I regret saying that because now peripheral neuropathy is diffuse and is affecting my arms and legs. An EMG/NCS should be done but that didn't identify the cause. The neurologist said my peripheral neuropathy was idiopathic.

An endocrinologist shed some light on the subject when my insulin level was found to be very high. The endocrinologist said that even though I wasn't diabetic, I did have insulin resistance. Impaired glucose regulation can lead to peripheral neuropathy. He said prednisone also leads to metabolic syndrome and peripheral neuropathy is a common result. I knew that prednisone wasn't helping my overall health and well being but I didn't fully appreciate everything that prednisone was doing to me.

I'm glad that Actemra seems to be working. Things get really interesting when you get below 10 mg of prednisone. There is the problem with adrenal insufficiency that creeps up on you when you try to reduce too fast after you get below 10 mg. Secondary adrenal insufficiency can only be pinned on prolonged use of prednisone in most cases.

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Replies to "Thank-you for the update. Sounds like you are making progress with tapering prednisone. I developed peripheral..."
grammy82 | @grammy82 | May 16, 2023

I don't want anyone to be afraid once they get to single digits. SLOW SLOW This is certainly a time when the tortoise is the winner of the race.
Entering my third year of GCA, I finally got down to single digits. I only decreased by .5 mg per month. Right now, I am holding at 3mg until I get two trips under my belt. I'm determined to see my granddaughter graduate from high school and WILL go with all the necessary apparatus.
The most important thing I can personally share is...when you reduce, don't anticipate something bad! Go slowly, and if you don't feel just right, then coast a bit longer on your present dosage. I have had no incidents at all and it is with my rheumy's blessing that I coast. Be encouraged, and as long as you have a wonderful group like this...you are never alone. 💞

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redboat | @redboat | May 18, 2023

Thanks for your comments.

My Prednisone tapering schedule goes down to 10 mg in 2 weeks, and then slowly decreases by 1 mg/day every 2 weeks after that. So far, there have been no relapses. If no relapses occur, the schedule shows me completely off Prednisone in October. I am thankful that at my current level (20 mg/day), my sleep has returned, and I am getting 8-9 hours per night. Due to the high dosage of Prednisone I was on, I only slept about 4 hours a night from March until early May, and that was tough.

As I taper off Prednisone, there are various weird pain occurrences, but so far they are transient, except for the nerve neuropathy in my hands and feet, and mild burning in my lats, shoulders, and upper arms. Those are always there.

Early on, before I was on Actemra, my inflammation markers did not go to normal with 20 mg/day of Prednisone. Also, before I was being treated, the inflammation markers were extraordinarily high; my CRP was about 10x higher than most with PMR before they are treated. I have seen clinical instructions that anyone with these two characteristics should be considered as likely to have some level of non-cranial Giant Cell Arteritis (GCA). My Actemra & Prednisone treatment regiment actually is almost exactly the one used to treat the GCA patients that received weekly Actemra injections reported in the New England J. of Medicine.
https://www.nejm.org/doi/full/10.1056/nejmoa1613849
Perhaps non-cranial GCA explains some of my symptoms, such as a strong feeling of charley horse in the center of both quadriceps. This was experienced before the proper levels of medication were found.

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