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Can sed rate and c reactive results be normal while taking Prednisone?
Polymyalgia Rheumatica (PMR) | Last Active: 2 days ago | Replies (41)Comment receiving replies
@kobellava What a frightening and fascinating medical journey you’ve been on. I definitely think you have some angels looking out for you! I understand now about the possibility of needing a maintenance dose, your entire life. But what a blessing you were able to retain your vision! I pray it stays that way. I know we all want to get off prednisone, but in your case, it seems to be a necessary evil.
You mentioned a “brain” doctor not knowing about GCA. I’m assuming you meant a neurologist? I can’t fathom he did not know what GCA is! That’s a little scary.
Sometimes the outcome of our circumstances depends on who we happen to cross paths with. Thank heavens, your ophthalmologist is still practicing, and decided to put off retirement. You had the right person around you at the right time.
I was touched to hear about you spending time in the yard with your 91 year old mother, who still worries about you. I lost my mom two years ago at age 94. She worried enough for the both of us! Although I miss her, I’m glad I received this diagnosis after she passed. At that age the stress is not good for them.
And yes I can also relate to the question of why did I get this? I have asked myself that many times. I’d like to ask one more question if you don’t mind. Knowing there is a 15-20% chance of those with PMR to develop GCA, it’s 50% of those with GCA develop polymyalgic symptoms. Do you have body pain and stiffness as well? I hope you don’t as you seem to have enough to handle already.
Thank you for the kind words about my friend too. Take care…
Replies to "@kobellava What a frightening and fascinating medical journey you’ve been on. I definitely think you have..."
@franklinlala God Bless your Mom, I can imagine you miss her. We have that long life in our family too and I thank God for the gift of my mom. She's my biggest supporter but you're right, worrying isn't good for them. Yes, the brain doctor was a neuro surgeon, something like that. 😂 I was really in the best hospital had so many doctors standing over me multiple times during the day. My kids were amazed about the care I got, having never been in the hospital other than to have babies I was impressed too, and relieved. The problem I run into is the lack of knowledge on GCA. I was shocked when I saw a vascular doctor who told me GCA isn't systemic. Are you serious I said, a simple Google search will tell you it absolutely is. My Rheumatologist knows it and so does my opthamologist. A vascular doctor not knowing that is disturbing. I have something going on with my feet that could be from the GCA or the Prednisone. It's not the large veins or arteries, could be small fiber. Haven't followed up with that neurologist yet. Probably won't, he tried to tell me we don't have nerves along our rib cage. How they get their degrees is a mystery to me. I do have terrible burning in the rib cage area. We really have to advocate for ourselves with these diseases. I've spent countless hours reading about it and have communicated with people in other countries through forums to find out if treatment is any different. It's basically the same but tapers vary, some way too fast. So many are blind from a delay in diagnosis. What I found interesting was reading about the huge spike in GCA during covid, unbelievable, massive. I do understand virus's can trigger autoimmune diseases but the spike was huge. I had a mild case and am not vaxxed, never had a flu shot and had the flu once, over 30 years ago. I do not understand my immune system attacking me like it is, I just don't. To answer your question on pain and stiffness I would have to say yes but it's tolerable, probably because of the Prednisone. I may have PMR but haven't discussed it with any doctor. My recent blood work is overall stable except high on the white blood cells and absolute neutrophils as always. Not nearly as high as they were. I believe we have angels watching over us, someone was there in the quiet of that room in the hospital with a view overlooking Lake Erie and the helicopter pad of the childrens hospital next door and I'll never forget it. Be blessed and tell your friend I'm praying for her and for you too. 🙏
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@franklinlala
"You mentioned a “brain” doctor not knowing about GCA. I’m assuming you meant a neurologist? I can’t fathom he did not know what GCA is!"
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I have seen many "specialists" ... their scope of medical practice is limited. A specialist in neurology who might know something about GCA would be a neuro-ophthalmologist. A general ophthalmologist would know as well but a general neurologist probably would not know too much about GCA. General neurologists focus on brain and spine disorders along with other types of nerve disorders. They see GCA less often in their daily work.
GCA and the damage it can cause to the optic nerve is a type of stroke and it is sometimes called an "eye stroke." You would generally be seen by a neuro-ophthalmologist.
I think a primary care doctor is the 'best doctor." They need to know a little bit about many things instead of a lot about one thing that a specialist knows.