PMR with normal blood markers

I developed PMR this winter, after being pretty much maintenance free all my life with no co-morbidities. But, I am female over 60 of Scandinavian descent which i have gleaned are risk factors. I had 3 Covid vaccines with no issues over a year prior to symptoms. Pretty sure I was exposed to Covid multiple times but never any symptoms or positive rapid test. After my CRP increased to 63.3 and I read about the possibility of also developing GCA, I began 40 mg of prednisone and was pain free in 3 hours. I continued on. Daily 40 mg of pred and had absolutely no side effects until my CRP dropped to 1.5 after 3 weeks. I created a radical tapering schedule to get off the pred which involves having the dose and an every other day dose. Today, I begin 10 mg for a 5 doses. Should be pred free by the end of February.
I am a holistic veterinarian so I appreciate there are other options to help the body. I am grateful to have had the immediate relief created by the pred, but appreciate the toxic effects of nearly every pharmaceutical. From a Functional Medicine viewpoint, the overreaction of the immune system can also be addressed by helping our cells return to normal, which they can do with some outside help. The pred put my T cells in much needed “time out” but now it is time to gently wake them.
Here is what I am doing….1. Taking 2 capsules twice a day of a Chinese herbal formula called Bing De Ling. You can read about it at http://www.anfala.com. Dr, Hua responded to my questions about it, and says it can be taken in conjunction with pred. Not sure how long I will continue at this dose, but will definitely continue taking this herbal formula for at least a year. 2. Acupuncture weekly. My pulses were very weak, and now have greatly improved and so is my perceived strength and stamina. 3. I have also received 4 IV infusions of an enhanced Myers Cocktail to help my cells nutritionally. Each IV bag dripped in 25 gr of Vitamin C, meg doses of B vitamins, amino acids, and glutathione. After the 1st treatment, I didn’t pee out any of the B vitamins, and even after the 2nd dose, my serum folate level was below normal although the B12 level was very high. I will continue the infusions throughout the pred dosage plan, and a little bit past that. Not inexpensive but neither is your health. Probably not covered by any insurance either. Google Myers Cocktail. Lots of places offering them these days. If tiny Fairbanks Alaska has them available, then good chance there is a place near you. I have also used them in my animal patients, btw. 4. Lots of oral supplements including collagen and adrenal support. 5. Diet is a biggie. Thankfully, I am not a sugar craver and can take or leave most carbohydrates. But, I crave salt and always have, thus focusing on adrenal support. I have always considered my diet healthy, but now it is more important than ever.
I highly recommend a book “the Wahl’s Protocol by Terry Wahl M.D. that she wrote after becoming very debilitated with MS. Not everything she recommends do I agree with, but you will find the words beginning on page 54 to really resonate for any autoimmune disease.
Glad to continue this dialogue if you have more questions. I have hope that my protocol will be successful for me and believe this approach might work for others.

Finding a rheumatologist is pretty much impossible, in my opinion. I have tried repeatedly to go to Mayo (from referrals from specialists i see there) or online referral….or finding a rheumatologist that has excellent reviews within 4 hours of where I live (Mayo is 6 hours away). Sometimes it seems that people want to be helpful, but don’t understand the many obstacles others face when we don’t live in areas that have all the large health care facility options available to them and the privilege of being able to switch at will. At times, we in rural areas wait months to even a year to see a specialist in an area if we can even get in. I self-advocate and I get tired of all the work it takes. I told one specialist I saw (4 hours away), who was so kind to recommend another specialist for me regarding something else; my response was thank you, but I’m presently tired out of managing these issues. He was empathic and encouraged me to contact the other doctor when I was ready.

Yes, I’ve heard that…
My rheumatologist is treating me for a different form of Vasculitis (PAN) I’ve had since 2015 with hydroxychloroquine.
PMR & GCV are other forms of Vasculitis.

Thanks!!

What are normal inflammation markers in a cbc or idk what test my son needs but I’m almost positive he has an autoimmune disease. He has chiari one and it usually comes with a few thank you!

cReactive protein, cell sedimentation rate and fibrinogen tests. There are also many tests for some autoimmune diseases which are usually grouped together in a package starting with a rheumatoid panel. All of the usual parameters that are routine were normal in my case.

I had PMR (polymyaliga rheumatica) if that is what we are talking about, I had it a few years ago and was on prednisone for about 13 months when I weened myself off of it. My symptoms had gone. No more weak muscles where I could barely pull up my clothes. I still have high SEDrate but that is from other things. I went off of it but not without consequences. My arms suffered a torn bicept ligament, muscle waste, and worst of all high blood pressure also weakened bones. So I guess its good not to have PMR!?? So proceed carefully and maybe get a second opinion. Interestingly I got all the Moderna shots and have had no side effects or covid. Hang in there.

Ihave Churg Strauss disease aka, Polyarteritis nodosa Eosinophilic granulomatosis w/polyangitis
I never linked the PMR with this until just now. I guess its all autoimmune related. I seem to have it all lately.
I live in a city that is in the northern most area of CA and still seems to be a area starved for doctors and specialists. They cannot be recruited to live here! So I am now looking at a commute to Portland where there is a vasculitis clinic. My rheuatologist here is closing his office and retireing! So I feel abandoned kind of. I am on Nucala injections x3 once a month and I'm not sure if I'm having any progress yet. I see my doctor in a few days but its the only time I would see him since I've been taking these injections, 3+months. I hope he can see some improvement in my blood work. One weird thing that has come from these injections is the bumps/lumps under my skin immediately after the first dose of Nucala within 14hours of injections my legs developed hundreds (too many to count) of these lumps. They are painful and some turn into red sores that are uber sensitive to any kind of touch as well as being itchy at times. My family doctor took a biopsy of two bumps that only showed they were made of fatty tissue and blood! Not any corelation to Vasculitis that they could see!? So still do not know what they are but it is most painful and with the neuropathy I already had in my feet it makes for countless sleepless nights. Nothing seems to relieve the pain but norco, which I am very cautions of. But when I am facing pain I simply cannot fight through I take 1/2 a pill and it helps. I cannot wait to see the doctor and share this all with him.

@oakwoman thanks for writing. It’s so sad that there aren’t enough medical professionals that can help people like us with rare diseases.
I wish you all the best finding someone who can help you. Vasculitis can be tricky!

Hello @oakwoman, Welcome to Connect. It can be a struggle when you have to travel a distance for medical treatment. Since you mentioned other conditions, I think you might find these discussions helpful also:

-- Churg-Strauss or EPGA: https://connect.mayoclinic.org/discussion/churg-strauss-or-epga/
-- Small Vessel Vasculitis Granulomatosis & Sjögren’s syndrome: https://connect.mayoclinic.org/discussion/small-vessel-vasculitis-granulomatosis-sjgrens-syndrome/.

What is the symptom that is the hardest to manage?