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@tammyholt

I had been dealing with excruciating pain beginning of October 2021. Same as a lot of you, it started in my left upper knee to my hip. I had my first Pfizer vaccination in December of 2020, my booster late January 2021. I started to have mild pain in August of 2021, from there it continued to move from my left side (leg, hip, shoulder, neck, down the left side of my back, my buttocks. In Sept 2021 it began to get worst, from my lower right upper leg, hip, lower back, buttocks and from there up my right shoulder and neck. Several weeks later it hit me with a ton of bricks in both of my upper arms. I could not dress, brush my teeth, wash my hair, body, nor could I put on my clothes. I ended up driving myself at 4:00 am to the ER. They ran all kinds of tests and found my CRP to be at 46.2. My previous blood test for CRP was 29.6. While I was in the ER, I was given 60 mg of prednisone, and a script for 20mg. I was to follow-up with my PCP to get the prednisone lowered to 15mg. I have seen several specialists - Rheumatologist, neurologist, ENT, ortho, and I'm to see a GI doctor next week. I started taking Methotrexate in May of last year, this has helped me to lower the prednisone gradually. It took almost 4 months for the Methotrexate to fully work. Because I was on such a high dose of prednisone for so long, my PCP put in an order for a bone scan. I was 4'11, I am now 4'10! I am still tired all the time; my eyes are very blurry after working several hours in a day, I've seen an eye doctor five times in 13 months. For the longest time they really did not know what I had. Both rheumatologists and neurologists were both stumped. I've had X-Rays, CT scans, MRI scans, and many blood tests, two procedures (EMG needle scan in my right leg, and a muscle biopsy in my left upper leg) I have muscle damage, mostly from prednisone. They just diagnosed me with PMR four months ago. I was a pretty healthy 57-year-old. I have been on intermittent FMLA for the last nine months. Through all this I have had to still work, even with the extreme pain. What is crazy is, I work in an internal medicine office with five physicians, and two nurse practitioners. I do not see any of these physicians as a patient, so in the beginning they didn't know anything about these issues and what to think of it. I had 190.4 vacation hours, over the course of fifteen months I'm down to 30 hours. I have been under a lot of stress for the past six years, my neurologist said this may have contributed to my diagnosis. I was wondering if there were any lawsuits filed against Pfizer, or someone to report this to? I still deal with mild pain, and I am on 5 mg of prednisone, ever since getting on methotrexate the lowest I can go before the pain starts to kick in has pretty much stayed at 5mg. I really want answers, and I really want off all of these meds I am on!

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Replies to "I had been dealing with excruciating pain beginning of October 2021. Same as a lot of..."

I feel your pain, but not as badly as you've experienced. My onset of PMR was within a week after my second Pfyzer vaccination--from what I've read from others, this seems to be about the norm. Having it flare up on you months later doesn't seem like it might have been the causal event. Take good care of yourself.

I am so sorry for what you experienced. I would love answers too. They took me off all prednisone for 3 weeks to run lab tests and get accurate results when I went to the Rheumatologist. It was the worst 3 weeks of my life! Like you, I could barely dress and shower myself. I live alone and I just cried every morning getting ready for work. I could barely get in my jeep. I hate it!!!
Prayers for everyone dealing with this mess!!!

https://www.vasculitisfoundation.org/mcm_faq/what-is-steroid-myopathy/
When you mentioned your muscle damage from prednisone, I Googled that. I know the majority of everyone on this “Connect” is on Prednisone. I also was on a short regimen when I was going to be entertaining a lot of guests for several days and then tapered off. I have a wonderful doctor who takes into account all my other conditions (severe osteoporosis and glaucoma). She told me I should probably go to a rheumatologist but warned me he will put me on long term prednisone. They will only address what your condition is that pertains to them and will not really care about your other serious medical conditions and how prednisone can cause irreparable damage. I have learned to live with the pain. Walking every day is crucial. The cbg-thc gummies plus melatonin help me sleep. I am alarmed that others who contribute to this blog are not aware about prednisone can be damaging other vital parts of their body. Pain relief is great. I experienced relief from it when I was on it for 3 weeks, but I am not willing to risk other damage it can cause!