I was diagnosed with PMR in Dec2020, tested negative for Covid, but then got sicker and had Covid about two weeks after initial symptoms. I took prednisone for Covid an immediately thought a miracle happened. I had to stay on prednisone, it was tapered gradually but after about 2.5years see rheumatologist again, he lowered prednisone to 5mg daily with Methotrexate 15mg per week. It didn't control my symptoms but it was better. I continued for another 18months. I tore a ligament in my foot, and had to walk with a moon boot for 6weeks. I decided to get a second opinion, as I constantly had knee and shoulder pain, as well as tenderness to pressure everywhere my tendons attached to bone. I realised that my tendons might become thinner due to the prednisone and so were my bone density. I was diagnosed with osteoporosis as well. Whilst on the immune supressing medications I had Herpes Zoster intensely and suffered from neuralgia, a month after that I contracted the Omicron variant of Covid again, after have 2 Covid vaccines in between, as well as a bacterial cyst in my uterus which had to be removed. I consulted the "new" rheumatologist who suspected AS, as I had lower back pain as well. A PET CT showed no AS. I asked the rheumatologist if I can stop the prednisone, but she said that I must take more MTX. I then asked if I can treat my symptoms only as I am not aware of permanent damage to joints because of PMR. So I suggested Vimovo 500/20 twice daily, with Amytryptaline 25mg at night, as well as metokarbamol 1500mg at night for the muscle spasms and 750mg in the morning. I also took calcium, vitD , Omega-3 and magnesium at night, with collagen in the hope that this recipe will help with bone density and tendon repair. I did quite well, but then woke up with a oinched nerve in my neck and had to go for neck surgery. Everybody tried to tell me that PMR does not last longer than two years, and I got the feeling that they suspected Fibromyalgia. The physician that I saw for my pre-surgery checkup suggested that I start takinf Duloxetine 60mg at night after surgery. 6weeks post surgery, no signs of bone forming were detected, so I was told to stop all anti-inflammatory drugs as it supresses bone repair and the natural healing process. Somebody then told me about the Anti-inflammatory diet. I downloaded that from Harvard's website as well as the book about Chronic inflammation. My physio also showed me a lot of stretching exercises as well as for strengthening my knee and leg muscles for the knee pain and improving balance. The time in bed after surgery left me very weak, and I fell whilst walking the dog, and hardly could get up myself. This was an eye opener and I started eating better and doing some exercises. In about 3 months I lost 15kg and looked and felt better. The diet definitely helps, but stress plays also a big role. I now subscribed to Autoimmune Reset course of Dr Nicola Schmitz. Implementing those also helped. Only problem was that I developed trigger fingers x 4, when I ate better, it subsided, there was a definite correlation with added sugar intake especially. I recently read about the BRIDGE-PMR trial where patients received Rituximab 1000mg and tapering prednisone, and 50% patients went into remussion even one year after administration. I had my infusion today, no side-effects so far. Will let you know how I am doing. I live in a country where Actemra is very expensive due to our weak currency, and Kevsara is not yet registered.
I also wat to add that I received a flu shot about 4 months ago, and that aggrevated my symptoms. It was definitely a flare of the PMR. I suspect that Covid and - vaccines as well as the other viral infections that I had caused a constant relapse of PMR. I have had no infections since stopping prednisone and MTX. Everyone's body react differently, but so far I am coping, one year after stopping the immune suppressive medication. I'll keep you posted!
M