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

Hi, new here, I've posted elsewhere but thought i'd also post on this thread

Let me explain…

In March 20 I had a serious of strange bites come up on my right leg, just below the knee. After 3 weeks of intense itching I went to the Docs to have it checked out. She prescribed me some anti-fungicidal cream (she stated it may have been infected hair follicles), which I used for a day or two and the symptoms\bites went away. However, then came the pain in both hips (possibly joints), both buttocks, which spread to both shoulders and upper arms and associated joints. Also, I lost weight, became fatigued and just didn't feel too good at all. The final nail for me was when both arms at the elbow, one morning, became extremely hot to touch and a red rash appeared. I know I would have to go back to the docs. Also by this time I struggled walking, getting out of cars, limped, hips\buttocks hurt like hell, getting out of bed, putting clothes on (stiff painful joints) and so forth. I was a limping frankenstein! Symptons were worse in mornings but to be fair I still feel the stiffness during the day.

So, in I went, series of blood tests(diabetes, liver, kidneys, prostrate markers and so forth) were taken and that included a test for Lymes because I thought it may have been that, due to lifestyle. All came back neg but for very low Folic acid count and 'possibly showing that you had a bacterial blood infection'! There has been NO raised inflammatory markers though! I was given 14 days to treat for possible Lymes before results came back and put on folic supplements.

To cut long story short, I'm om pred and because my Doc didn't diagnose PMR, I raised the possibility. It appears here in the UK they aren't bothered getting to the bottom of my condition during this pandemic. I said to him why not try pred and we will see if it helps, it did @10mg. By this time it was June. I feel my GP isn't supporting me much (CV-19?) and he has left me to decide on the management of the dosage but I'm concerned as to why I dont have any blood inflammatory markers for this but Pred is working. Only other thing is I appear to be getting more cherry angioma (not spider) since this flared up.

I'm a 54 year old male whom had in the past, had an active lifestyle. I'm currently reducing pred using the 'slow' method that alternates between dosage, currently 9mg with a day of 8mg. However, I do still feel 'twinges' of discomfort. (My GP just wanted me off the pred ASAP and it didn't work)

Question: Does pred make you wanna pee more? Possible thirst\dry throat?

PS I have now put weight back on, got an appetite and no fever or rash which I had right at the beginning.

Thanks for listening

@frankenstein -- Here's some information I found on your urination question - "Talk to your doctor right away if you have more than one of these symptoms while you are using prednisone: blurred vision, dizziness or fainting, a fast, irregular, or pounding heartbeat, increased thirst or urination, irritability, or unusual tiredness or weakness.Jan 18, 2020" -- Prednisone Advanced Patient Information - Drugs.com
- https://www.drugs.com/cons/prednisone.html

Interesting re: irritable bowel syndrome. I too have had this added to my issues since pmr and prednisone although low dose 2mg daily. Also developed cataracts.

I'm a 73 year old female diagnosed with PMR after a rapid onset of muscle pain in legs, hip, and arms. My blood tests showed elevated CRP, RA latex, but normal sed rate. So my doctor referred me to a rheumatologist. I was started on the prednisone dose pack and within three days pain free. Went to 15 mg and started weaning down from there over six month period. When I reached 2mg I started getting swelling in all my joints (unlike onset, now in joints instead of muscles) including wrists, hands, knees, ankles, toes and bottom of my feet. This is on both sides. At appointment, she noted how hot and swollen joints were and said probably a flare up. She put me up to 10mg to start wean down again. Probably a flare up now with inflammatory issues. She won't say RA but maybe pseudo gout. Can you have both?

I am back down to 3mg and still having these issues after another five months. When I get out of bed it is very difficult to walk and am hobbling as feet and ankles don't want to support me. Also, hands and wrists feel like giant paws. I do some walking and it loosens some but when I return and sit they go back to stiffness that last throughout the day. Up coming appointment in a week and wondering about other avenues to pursue. Would an MRI or ultra sound show any other issues that might be the cause of continual pain. Are there other drugs I should consider? I'm finding it very hard for an extremly active person to hardly be able to function. Thank you for any suggestions you may have.

I am also a 73 year old female with same history as you describe except I have taken two years to come down from 15 mg daily prednisone to taking 1 mg on three days a week. My aim was and is to get as low as I can while tolerating the symptoms. So when you mention yourself having other issues than PMR and you are considering more investigations it does seem worthwhile. I know how hard it must be for an extremely active person as yourself. Wish you good luck in your search for answers..

Thxs for the reply. Like you I want off of prednisone. I have osteoposis and also want to get my immune system back because of Covid . The first PMR onset was not as bad as the flare up so not sure what I should expect. Did you get flare ups when you went down in dose?

It was the Covid that pushed me into making more of an effort in reducing the prednisone as well. That and so many of the side effects that could occur unknown to us immediately, like increase in blood sugar, high blood pressure and lowering immune system. All the things that tend to happen when we get into our seventies. They say we all differ of course but for me the first onset was the worst and coming down I can't say I have had any flare ups but I do notice now and then stiffness in back and hands and shoulders that weren't there in the first month at all.I must admit I have still have difficulty in understanding how people know whether a new symptom is actually a result of withdrawal of prednisone or the original PMR getting worse. You might not be interested in that aspect. John gave us some links during an earlier conversation. Your osteoposis must make it trickier to diagnose.

Hello @pampep, I would like to add my welcome to Connect along with @heretuanga1947 and other members. I'm 77 and have had 2 occurrences of PMR. The 1st time it took me 3-1/2 years to taper off of prednisone. I started with 20 mg and the last six months went between 1 mg and 1/2 mg until I was able to taper off with only minor pain.

@ssg and @dadcue have discussed PMR and osteoporosis in another discussion and may have suggestions for you.

Have you talked with the rheumatologist about a slower tapering schedule or other things you can do to help your symptoms?

Thxs @johnbishop.
My first taper was Nov 019 and went a month @ 15mg down to 12.5 a month then @10 started 2wk regiment going down to 2. Then I had a relapse. So next appt in Jul back to 10mg for 5 days then 7mg for a week then 6mg for a week. So then 5, 4, 3, and now 2mg each for 14 days. I did continue to have a lot of pain and swelling but hoped it might go away, ha ha, never did. So now my appt next week I have been doing 2mg one day and 4 the next . My big concern is how my ankles, feet, hands and wrists are not responding. I don't see much info from others about those being issues. I still have the muscle weakness in quads and shoulder. Thxs I will look at the other articles on osteo

Hi Ethan. I am new to the group and really appreciate the perspectives and experiences expressed here. I am a 73 year old white male with no known Viking genes [ha ha?]. Further health-related context: Developed symptoms of Ankylosing Spondylitis in my mind-twenties and have managed it over the decades with the help of the physical therapy, the VA, and some great PCP's and rheumatologists. I am basically fused from the mid-thorax to the neck...but not too bent over. My days of painting ceilings and catching pop fly balls are over, but with the fusing, the pain has subsided quite a bit. Over the years I have taken just about every type of medication including biologics but as the AS inflammation decreased, so also did the pain. So much for AS.

Regarding PMR, it came on me around Memorial Day 2020 and the most interesting thing to me is that I presented with almost the exact text book symptoms and experiences as those documented on this board as well as all over the internet. Most importantly, this very specific pain came upon me before I even know what PMR was. I had never heard of it and did not know anyone who suffered with it. Hence, no possibility of my being influenced by anyone's experiences other than my own.

At the beginning, it was very painful to rise from a chair, or tuck in a shirt, or wash my hair - as hip/shoulder girdles were severely impacted. I also had severe carpal tunnel pain/tingling in the right thumb and trigger-finger while sleeping. My PCP was inclined to begin a Prednisone taper (50mg to 10mg) over the course of two weeks. He also did a sed rate and a CRP as well as the other indicated labs. Interesting to note that over the years in spite of excruciating arthritic pain and joint fusing, my sed rates were never particularly high, and I never had a lot of swelling or redness. This time, the sed rate was 58. You will probably not be surprised to hear that all of the PMR pain and symptoms (including carpal tunnel) went away in the first 12 hours of the taper. At the end of the first two weeks I was feeling as good as possible. Also, no indications of GCA.

We then transitioned to my rheumatologist and we began the process of moving from 10 Mg/day to lower dosages. Suspect we taped down to 5 mg a little too quickly and some of the symptoms returned. Right now I am at 8 Mg/day and doing OK but some of the shoulder pain is returning...although not that debilitating so my Rheumatologist and I have agreed to continue for another month. It really is not that painful and just being able to get up and down or pick up something from the floor without wishing for a sky-hook has been uplifting.

Sorry to go on and on with my life story but I guess my question for now is to seek opinions and experiences as to whether to anticipate the other joints/muscles to be re-impacted or if maybe holding at 8 for many months is a better way to go. I'm also struggling to understand whether this pain, although definitely real, is local to the joints/muscles, or is impacting the pain-receptors in the brain.