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Sugar and PMR

Polymyalgia Rheumatica (PMR) | Last Active: May 24 7:18pm | Replies (72)

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@ess77

@vanns, @johnbishop, @megz, and all...
My goodness! What wonderful help from you all for those of us who are new to PMR!

I was diagnosed a week ago with PMR and GCA. My doctor put me on Doxycyline for 10 days and Prednisone I'm now tapering. I have 1 last pill for tomorrow. Then, I'm off both meds.

I had Covid for the 1st time in July. I use a bi-pap and O2 at night and I think that saved me from serious Covid. I took Paxlovid and Methatrexate?...a med I've never taken before. I responded well and was better fairly quickly for me as I have multiple autoimmune and other diseases and have taken Prednisone frequently for Sarcoid, bronchitis, etc.

I had bronchitis after Covid in September/October and took Augmentum and Mexatrexate? Wow! That steroid gave me a real kick! I was climbing the walls from the 1st dose. Slept very little. Was up and active, almost manic at times. It was a very difficult time and again the bipap and nightly O2 were very helpful.

Then, I had an iron infusion, as I have problems with frequently low Ferritin and have infusions as needed. I kept going downhill even after the infusion, and had several side effects during the IV which never happened before. My hips hurt badly, my hands/ arthritis hurt more, my shoulders and neck began to hurt, had a headache and other issues. With added meds and slow IV, I completed the treatment. But, went home beaten up and got worse daily, rather than improving. Fatigue became severe and I was so weak I couldn't turn over in bed. I stayed in bed most of the days due to increased fatigue, weakness, the pains in specific areas, then headaches and vision changes....that's when my PCP diagnosed PMR and GCA. Geez! All the time I thought the iron infusion didn't work, but I had 2 more diagnoses.

I'm still spending most days in bed, with some limited activity but with heavy sweating after activity, increased pain, shortness of breath and weakness.

I'm diabetic, take Ozempic to avoid my gut and Metformin. It's great. I do have some sugar daily, but usually not much and my A1C is 5.3. During all this, I did wonder if weakness and sweating was related to diabetes.
Nope. It seems it was PMR.

I'll be more strict re processed sugar. I'm off gluten and improved. My diet I'd limited, but I've been eating more fresh fruits. Suppose that will stop now.

Do you see your PMR symptoms lessen after Prednisone? How often do you have relapses? Does it depend on your activity? Yes, on diet. Any other tips you have to help this newbe?

I hate this and am angry at these 2 illnesses hitting my body now. I was so improved before Covid. Been going backwards since. Please tell me I can turn this around...

Blessings to you...
Elizabeth

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Replies to "@vanns, @johnbishop, @megz, and all... My goodness! What wonderful help from you all for those of..."

I agree with vanns -- I was diagnosed with PMR in late July of this year and have so far only tapered from 15 to 14 mg a day in all that time. My doctor wanted me to taper by 2.5 mg at a time, but that was too much and the pain was back within a week. I don't think doctors really understand this disease very well, and they seem to be far more concerned about the side effects of long-term prednisone use than anything else. I worry about the side effects too, but if prednisone is the only medication that works for PMR and GCA, then we have no choice but to take it - sometimes for months or even years.

Hi Elizabeth @ess77, There are a couple of other discussions you might find helpful if you are new to PMR.

– PMR Diet: Foods to eat and avoid: https://connect.mayoclinic.org/discussion/diet-and-pmr/
-- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/

The prednisone provides relief from the pain caused by the PMR and GCA or at least it's supposed to at the right dose. Dosage can depend on body weight and symptoms (I think). Hoping you can get it under control quickly. I think the problem a lot of us have had is trying to taper off of prednisone too quickly when we really need to listen to what our body is telling us. It helps to keep a daily pain/symptom log along with your dosage of prednisone for that day.