PMR and tapering -- will blood work change?

Thanks so much! You are such an asset to the site! 123sw

My GP has referred me on to Rhumatologist and thinks I have PMR. Unfortunately I have to wait one more week for appointment and I’m dying. Usually very active person but if I walk couple blocks now I’m in so much pain. Had sinus issues this Spring and right after, the inflamed body parts. With prednisone, will I recover or does it normally keep coming back?

@zaa I don't really think anyone can answer your question with any kind of authority. The prednisone is the miracle drug for PMR and does manage the pain by addressing the inflammation that causes the pain. My first flare up of PMR was 2007 and it lasted 3-1/2 years until I was finally able to taper off of prednisone. It stayed in remission for 6 years and I was on prednisone again but was able to taper off in mid 2018. It's still in remission and I'm hoping it stays that way. I did make some lifestyle changes after my second flare up of PMR - lost weight, exercise more, focused on eating healthier and avoiding foods that can be inflammatory.

Here's a YouTube video you might find helpful.

I had my first bout of PMR thirteen years ago. It lasted six months and then slowly resolved with intermittent doses of prednisone, and I was pain free until it flared again in early 2021 after I took the Covid vaccination. I am now tapering off of prednisone and am down to 7.5 mgs. Prednisone is not a cure, but it relieves the pain and inflammation until the PMR goes into remission, which in most or many cases it eventually does. I hope this helps and I hope you feel better soon.

Thanks for replying. Hate to say it but lots happened to me after my COVID shots. I just want to go back to biking, hiking, yoga, etc again. Were you able to be active without pain while on your prednisone? Any special diet you’re careful to follow? I’ve lost 20 lbs and look forward to gaining some back but concerned about affects of prednisone.

@zaa - You might find the following discussion helpful.

Low-carb healthy fat living. Intermittent fasting. What’s your why?: https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/

Although I had intense pain with the PMR and had trouble performing the simplest of tasks, I was able to continue my daily walks on a limited basis even before starting on the prednisone. I found that PMR pain typically lessens as the day goes on, especially if you make an effort to move and be active. I learned that movement, painful as it is with PMR, is a better remedy than almost anything besides prednisone. It helps to get out, see people, and do things you enjoy to distract yourself from the pain. The proper dose of prednisone allows you to resume most activities with minimal side effects from the medication. The highest dose my rheumatologist would allow me to take was 15 mgs, which did not completely relieve all the pain, but it was enough to allow me to function again. I am now down to 7.5 mgs. and due to reduce to 5 mgs. in a couple of days. I have gotten progressively better even though I am consistently reducing the dosage of prednisone. I have not noticed any unwanted effects from the medication. I have also tried to eat foods, such as vegetables, fruits and especially berries that are purported to reduce inflammation and have been taking fish oil capsules and turmeric. I am 75 years old and I weigh approximately 100 pounds. The prednisone has not caused any weight gain or loss. I am now six months into this flare-up and have improved significantly in the last two months. I am hoping to be able to discontinue the prednisone by September. My rheumatologist advised that it would take three months to get completely off of it, so that is what I am shooting for. I hope this is helpful to you and that you are soon feeling better.

I am on my 3rd bout of PMR. I had my first bout in my 50’s and, after a long bout of stiffness and pain, prednisone literally gave me overnight relief. It took 2 years to get off prednisone and I had a 12 year remission. I am now 74 and on my 3rd bout, currently reducing from 5 to 4 mg pred, taking it slow. I had a little uptake of pred with the vaccine, but felt like it meant the vaccine was working. I am on no special diet, but am a pretty healthy eater. I walk an hour a day and am active. The only precaution from my 1st rheumatologist was to avoid weights due to risk of tendinitis. Side-effect of pred was rising pressures in my eyes and I get that checked every 6 months. Prednisone reduction for me goes quickly until 7 mg, then I take it very slow. 3rd bout started about 1 1/2 years ago and I suspect I will be at least a year before I totally get off prednisone (if ever). It is a bit of a mysterious disease and seems to effect people differently. I do split my prednisone dose as it seems to give me better coverage. Sorry you have to wait a week before seeing rheumatologist.

Just to manage expectations...according to the latest studies, the average length of duration for PMR is 5.9 years. Prednisone is the only medicine that helps. And with prednisone, once you experience the "miracle response," the objective isn't a relentless drive to zero. It's taking it slow and finding the lowest dose where you feel reasonably well. It took me six weeks to get diagnosed and I was paralyzed with pain so I understand your difficulty at the moment. If it's PMR, you should feel relief immediately or within a few days. I felt great until I got below 10mgs. Now it's a slow slog. If I go too fast, I wind up having to go back to a higher dose and rest there awhile. So take it slow and easy, and I hope you get relief soon.

I read prednisone can increase risks of cataracts so concerned since eye dr. already mentioned they are forming. I’ll have to mention pressure as well. I visited my GP and he put in Urgent Referral to see rheumatologist but they still put me 3 weeks out so 1 more week to go unless someone cancels and praying for that to happen. I’m hoping I don’t have Giant Cell which goes hand in hand with PMR. Is your scalp tender when you have symptoms? With your 3 bouts, have you noticed that it’s triggered by anything like stress or over doing exercise or seasonal changes or something else? I’ve been fighting off multiple issues last 4 months and wonder if it all stems from immunity system not functioning properly. Do you also have other issues like sinusitis, ear/tinnitus &deafness, or another?