Can sed rate and c reactive results be normal while taking Prednisone?

@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…

I don't know all the facts and I'm not a doctor but I am a patient with PM. R. And your rapid rate of reduction of the predisone is very unusual protocol. You may very well be in remission, and it's not unusual to have a normal SED and c r p and still have pmr. But you still need to taper slowly. Because it's your adrenal gland withdrawal symptoms that you're dealing with now. For example, I'm down to 3 mg now, but I was pretty much managed PMR symptoms when I was around ten milligrams. Remember, there's a difference between PMR symptoms and prednisone withdrawal symptoms. They 're similar. But different.

@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…

@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.

@dadcue Not every neurologist is an expert in giant cell arteritis. Although they learn about it diagnosis and treatment is left to rheumatologists and neuro-opthalmologists. He was not looking for that I imagine when I had my stroke. I didn't see him the second time I went in the hospital. My primary care has me spending time with interns when I'm there to teach them about GCA. She doesn't know much about it, hard to find doctors that do. My opthalmologist is neuro-op and my Rheumatologist is young but seems educated on GCA, those are the two I rely on.

@kobellava

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.

@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. 🙏

@kobellava Where to begin? You have had a wealth of experiences both good and bad. I am floored by some of the feedback from the doctors. I hope you don’t give up on them. For every questionable doctor, there are equally skilled and dedicated ones too. Our challenge is finding them. No one likes going to the doctor, except my mom, she treated it like a social visit. My point being if you are having pain in your feet, that is your body speaking to you and it worth having it looked at. Even your ribs. I have read about something called intercostal neuralgia caused by inflammation. Ask the doctor who said there are no nerves running along your ribs about that!

I was having lunch with a retired doctor friend yesterday. We were discussing the very topic of PMR, vaccinations, and Covid and if there was any relationship between it all. The information he had available to him showed there was a bigger correlation of PMR for patients that had contracted the Covid virus than those who had only received the vaccinations. Many studies were conducted in Japan. Where GCA falls into all of this is another question. I wonder if there just isn’t enough data and studies yet to significantly prove one theory over another.
For us it doesn’t matter now, but for those behind us it sure would be nice to have solid answers.
I love how you said your mom is your biggest supporter. I would tell everyone my mom was my biggest cheer leader. We all need those kind of people in our lives that build us up. And your story about the presence in your hospital room gave me chills. I’m sure you are right! Thanks for sharing, as well as your blessings. Many back to you as well.

@kobellava Where to begin? You have had a wealth of experiences both good and bad. I am floored by some of the feedback from the doctors. I hope you don’t give up on them. For every questionable doctor, there are equally skilled and dedicated ones too. Our challenge is finding them. No one likes going to the doctor, except my mom, she treated it like a social visit. My point being if you are having pain in your feet, that is your body speaking to you and it worth having it looked at. Even your ribs. I have read about something called intercostal neuralgia caused by inflammation. Ask the doctor who said there are no nerves running along your ribs about that!

I was having lunch with a retired doctor friend yesterday. We were discussing the very topic of PMR, vaccinations, and Covid and if there was any relationship between it all. The information he had available to him showed there was a bigger correlation of PMR for patients that had contracted the Covid virus than those who had only received the vaccinations. Many studies were conducted in Japan. Where GCA falls into all of this is another question. I wonder if there just isn’t enough data and studies yet to significantly prove one theory over another.
For us it doesn’t matter now, but for those behind us it sure would be nice to have solid answers.
I love how you said your mom is your biggest supporter. I would tell everyone my mom was my biggest cheer leader. We all need those kind of people in our lives that build us up. And your story about the presence in your hospital room gave me chills. I’m sure you are right! Thanks for sharing, as well as your blessings. Many back to you as well.

@franklinlala

Rib pain might be costochondritis and it was caused by inflammation too.
https://www.mayoclinic.org/diseases-conditions/costochondritis/symptoms-causes/syc-20371175
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My rheumatologist wasn't overly concerned about my rib pain. She said it was part of the territory I was in meaning the systemic inflammation that I had. Costochondritis can be a symptom of chronic inflammatory conditions like autoimmune disorders.

By the way ... I liked all of the doctors who have treated my medical conditions. I either knew them personally because they were my friends and neighbors. Otherwise, I worked with them professionally at the hospital that I worked at. It was all part of living in Iowa in a small city with a large University Medical Center.
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@kobellava

HLA-B27 was an expensive lab test when I was first diagnosed with uveitis and reactive arthritis about 40 years ago. Checking for it was more of an afterthought. The doctor said it wouldn't change my diagnosis or how I would be treated in the future. I said that I was interested in knowing if I was positive or not so the lab was ordered and I was positive.

The result of me being HLA-B27 positive now comes up frequently at my doctor visits. It has given some credence to a wide variety of medical problems. Mostly a staff doctor will tell a resident doctor that I'm HLA-B27 positive because of the educational value of it.
https://spondylitis.org/research-new/is-it-good-or-bad-to-be-hla-b27-positive-findings-from-an-saa-sponsored-survey/