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Can sed rate and c reactive results be normal while taking Prednisone?
Polymyalgia Rheumatica (PMR) | Last Active: 3 days ago | Replies (41)Comment receiving replies
It gets confusing when too many specialists get involved. In general, I dislike seeing any doctor, Forty years ago, I started with an autoimmune related eye disorder called uveitis which can also cause vision loss.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
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At first, I listed my ophthalmologist as my primary care doctor but I tried to restrict my complaints to things related to my eye. When I told my ophthalmologist about the "electric shocks" around my eye, I was referred to a neurologist who easily diagnosed trigeminal neuralgia but could not treat it very easily.
https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/symptoms-causes/syc-20353344
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Up until this time I wasn't diagnosed with PMR yet so GCA wasn't considered. I was diagnosed with reactive arthritis by a primary care doctor but I didn't continue with the primary doctor who said that I needed a rheumatologist. However, the prednisone I received for uveitis stopped all the arthritic pain from reactive arthritis temporarily.
https://www.mayoclinic.org/diseases-conditions/reactive-arthritis/symptoms-causes/syc-20354838
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I neglected to tell my ophthalmolgist about being diagnosed with reactive arthritis so he assumed I had a bad case of recurring uveitis. My ophthalmologist prescribed massive amounts of prednisone for every uveitis flare which averaged 1-2 times per years. Massive amounts of Prednisone was 60-100 mg. I don't know why so much was prescribed because I could taper off Prednisone going from 100 mg to zero again in a month or two. That regimen worked well for uveitis flares.
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I always had leftover Prednisone which I used for trigeminal neuralgia and every kind of pain imaginable for nearly 20 years before PMR was diagnosed. I treated myself and didn't see any doctor except for the ophthalmologist.
I was busted by my wife who turned me in to her primary care doctor. I think she didn't want to help me get dressed when I couldn't lift my arms and get out of bed anymore. when I was only 52 years old. That was when I was officially diagnosed with PMR.
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I already knew I was genetically predisposed to autoimmune problems because of being positive for HLA-B27. I didn't think there was anything anyone could do for me since I had bad genes.
https://emedicine.medscape.com/article/1201027-overview
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In any case I was referred to multiple specialists for a wide range of problems mostly caused by too much prednisone and its side effects. Eventually an endocrinologist was consulted to help me get off Prednisone.
Thankfully a neurosurgeon stopped the trigeminal neuralgia for me. He could not believe that I only took Prednisone because trigeminal neuralgia is sometimes called the worst pain known to humanity or the "suicide disease." The neurosurgeon told me Prednisone never fixes anything! An orthopedic surgeon replaced my knees so that was helpful too.
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@dadcue I don't like seeing doctors either, I've declined all drugs offered except Prednisone. It's not a cure it just masks the pain and controls the inflammation. It's the devil but sounds like it got you through PMR until diagnosis. The delays in diagnosis of GCA and PMR seems criminal to me and needs to be addressed by the medical community. So many around the world are blind or partially blind because of delay in diagnosis. I did try one injection of Actemra at my rheumatologists insistence and ended up in the emergency room with breathing issues. Sounds like you have been been through a lot and for a very long time. I can imagine your pain, it was intense for me too, maybe not as intense as yours but it was the worst I had experienced. So painful it's hard to describe. You were young starting with PMR and I imagine it really interfered with quality of life. I'm sure your wife just loves you and wanted to get to the bottom of what's going on. My husband is more stubborn than me when it comes to doctors, it's a battle. Happy you got your knees fixed. You've been dealing with alot for a long time, you need a break! I think it's my adrenal glands giving me the problems now. How did you find out about the HLA-B27. What were the circumstances?