Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

That is interesting how the time between infusions is being stretched out. I started Actemra injections on January 1st, 2019. I was able to get off prednisone for good after about one year. I had one failed attempt to taper off while doing injections every two weeks. When injections were weekly, I was successful.

I have not been able to stop Actemra since it was first tried but a neurosurgeon wanted me off Actemra for 1 month before surgery and 1 month after surgery. I was switched to Actemra infusions just to see if I could go 2 months between infusions. I went 6 weeks without any problems. I thought the infusions were great because I was getting tired of doing weekly injections.

My back surgery was postponed so I'm back doing weekly injections mostly because I have a supply of injections that will expire if not used. My rheumatologist doesn't want me to go more than 2 weeks between injections.

I found a recent paper that says inflammation commonly results in reduced HDL and LDL levels and increases in triglycerides. The reasons are only partially understood.
https://www.ncbi.nlm.nih.gov/books/NBK326741/
The changes in cholesterol levels are apparently a part of the innate immune system response, which is the most ancient part of our immune system.

Here's two quotes from the paper: "The most common changes are decreases in serum HDL and increases in triglycerides. The increase in serum triglycerides is due to both an increase in hepatic VLDL production and secretion and a decrease in the clearance of triglyceride rich lipoproteins. The mechanisms by which inflammation and infection decrease HDL levels are uncertain...LDL levels are frequently decreased but the prevalence of small dense LDL is increased due to exchange of triglycerides from triglyceride rich lipoproteins to LDL followed by triglyceride hydrolysis."

"The changes in lipids and lipoproteins that occur during inflammation and infection are part of the innate immune response and therefore are likely to play an important role in protecting from the detrimental effects of infection and inflammatory stimuli (32,151-153). Some of the potential beneficial effects are listed in Table 3. Thus, the changes in lipid and lipoprotein metabolism that occur during inflammation may initially be protective but if chronic can increase the risk of atherosclerosis.

Table 3.
Beneficial Effects of Lipoproteins

Redistribution of nutrients to immune cells that are important in host defense
Lipoproteins bind endotoxin, lipoteichoic acid, viruses and other biological agents and prevent their toxic effects
Lipoproteins bind urate crystals
Lipoproteins bind and target parasites for destruction
Apolipoproteins neutralize viruses
Apolipoproteins lyse parasites"

Bottom line, inflammation is not a good thing!

I am down to one infusion every 14 days, tried to go down to every 21 days but need to reduce by adding a day each time verses jumping to 21. I also lost weight which I thought was because I stopped Prednisone. Need to gain some back(sorry) but being too thin at my age is not good for strength and energy level. Exercise at any level is helpful to keep muscles from getting stiff. Thank you all for sharing

Doctors will MRI my head to rule out any serious Giant Cell Arteritis concerns.

I've had a mild headache behind my eyes and in my forehead since I became ill in mid-January 2023.

The 24/7 pain in my joints was so excruciating that I ignored the headache. But now the prednisone is bringing down the joint inflammation - my most recent CRP was still quite elevated at 30 mg/l, but it's more than 10x below what it was. So the headache is more obvious.

Hoping there's nothing to it.

Hi cindyjane, I have been dealing with PMR for 16 months and am now down to 2 mg of Prednisone. I am 75 and have never been ill in my life so to cope with it mentally has been a challenge. On the other hand, why not me? I have learned that in order to get as much out of this changed life as I can, I have to put myself first. When I have a bad day, I just do the things I have the energy for and usually in the afternoon when the stiffness has abated. I enjoy and allow for those naps and realize it's my body's way of recuperating. Let your family and friends know that there are days when you need help, I used to be the friend who picked everyone up and did all the driving to parts near and far. Now I step back and allow others to spoil me a bit. Be kind to yourself. Keep reaching out to the wonderful people on this forum because you are certainly not alone.

What a wonderful reply. I love what you told me. Like you, I'll be okay. I nap a lot more and tell my husband, I can no longer handle this or that. A new life and a new way to live. You and I will be okay !!

I contracted Covid over the weekend. Chills, massive fatigue, body aches from head to toe. Took a home test and got a positive result. My heme/onc prescribed Paxlovid. Very mild respiratory symptoms, a little congestion but lungs are fine. Still really wiped out today but no fever. Was supposed to see a new rheumatologist later this week but had to reschedule until May.

Interesting article on a study regarding relationship between COVID and autoimmune diseases.
https://www.medrxiv.org/content/10.1101/2023.01.25.23285014v1.full-text

I worked in a COVID unit for 10 months and never got COVID. With the first vaccine, I had horrible joint pain and reported it online as an adverse affect because the pain was so bad in my shoulders, hips and knees. After my 2nd Pfizer vaccine, same pain and then 6 weeks later I got COVID, 4 weeks after that I got Strep throat(which I have not had since I was 8 years old and had my tonsils out). Then 7 months later I developed all the signs and symptoms of PMR. The doctor insisted it was not PMR, but after taking me off steroids for 3 weeks, and excruciating pain for 3 weeks, the lab work indicated PMR. I still don't understand why I had to suffer as this doctor was looking at nothing but lab work. The fact that I couldn't raise my left arm or hardly go from a sitting to standing position, or how I would just cry trying to take a shower or get dressed, or how my body shook with pain when I would try to get out of bed...it was awful. And now I am seeing a lot more links of PMR to the Pfizer vaccine. A shame that they have no liability......