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

Thank you for your thoughts. My dr seems to think probiotics are okay to take. I think more research will be coming on this. I think we all know that diet definitely plays a role in auto immune diseases

I was also on 60 mg/day of Prednisone and am tapering down using weekly injections of Actemra. I am now at 20 mg/day of Prednisone. I was diagnosed with some combination of PMR and GCA on Feb 3, 2023.

My feet and hands tingle too. I think it is due to high blood sugar induced by Prednisone; this causes nerve damage in your hands and feet which induces the tingling. Diabetics also experience this when their blood sugar gets high.

Avoiding food with high glycemic indices (sugars, refined grains, and concentrated starches like potatoes) can reduce the blood sugar spikes. Also, taking a short walk (10-20 minutes) after meals significantly reduces blood sugar spikes, and hence should reduce the tingling.

Hope this helps.

All great advice, thanks💞

I too have had numbness in my feet which has changed my walking style. I am constantly monitoring how I walk --much more slowly and carefully. Just recently I've become aware of tingling in my left hand , only at night in bed. It seems to go fairly quickly but I am disturbed by it. I've been on prednisone [from 60mg down to 12.5mg now]since August 22. Also a cocktail the drugs including methotrextate just recently. I had PMR back in 2015/16, then GCA since last August.

I have a strange combination of traits that make GCA seem really scary. I was born with migrines and found that later in life synthetic hormines kept me headache free. But then diagnosed with breast cancer and had to go on estrogen blocker. Also have PMR and glaucoma and pred is causing havoc with my eyes. I went through an extreme taper with my hormones when I switched. And it worked! No migraines. But have to be vigilent but how do I handle the high pred and my glaucoma if GCA strikes? (I was telling my eye doc about all this when the young tech overheard it all, he told me, "You have such a good attitude!" Well, one has to be practical.) I guess the new biologic will be the answer? Hope I don't have to find out.

I hope not, suetex! But from the sound of you...if you do you'll take it and be glad it is available.💞

Believe me, I am! And thank you for your concern.

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.

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. 💞

I was an underachiever when it came to tapering off quickly. It took me more than 12 years to get off prednisone so I tapered very slowly and I was very patient. I wasn't racing anyone.

My rheumatologist encouraged me to taper lower but she understood the difficulties I would encounter at lower doses. She also knew about everything I was dealing with in addition to PMR. She just encouraged me to keep trying until I was successful. She did everything she could so eventually I was successful. I have been off prednisone for the last 2 years so I'm not tapering at all now.

Things changed after Actemra was introduced to me. An endocrinologist was consulted and confirmed that I had adrenal insufficiency when I got into single digits of prednisone. The endocrinologist said I should hold my dose at 3 mg for an extended period of time. She warned me that my cortisol level was too low to taper any further. I'm glad she warned me because I would have tapered off sooner without knowing what might happen to me. My endocrinologist wasn't sure what would happen either if I tapered off too soon. That was why she put safeguards in place in case anything did happen and only said it "might be safe" to stop taking prednisone.

I didn't anticipate anything bad would happen. My endocrinologist said that I needed to be careful at that low of a prednisone dose after long term prednisone use and especially careful when I stopped prednisone so that's what I did.

I was completely surprised that Actemra worked so well and I was able to get off prednisone rather quickly after many years of trying.. My endocrinologist was encouraged that I had any adrenal function left after taking such high doses of prednisone for such a long period of time.

I would never tell anyone to taper fast. Tapering quickly wasn't an option for me after PMR was diagnosed. I have other autoimmune conditions that preceded PMR. I could taper from 60 mg to zero is less than 2 months to achieve remission of those conditions.

PMR was responsive to prednisone but it does next to nothing to allow people to achieve remission quickly. Actemra changed all that for me so I wish to share my experience. My rhuematologist doesn't know that remission is possible for me but did document that PMR seems to be in remission while I continue to take Actemra.

People should do what they think is best. I completely understand that there isn't any perfect tapering method,