Is it, or isn't it......PMR

[PMRCanada]

Hi folks,

I'm new to this site, and happy to have found you all.

I suffered pain in and behind my knees beginning Dec/17. Prior to that I had gained weight and after a long period of inactivity, I went to the new gym behind our new house and tried out most of the weight equipment and did rigourous walks on the treadmill on an include. Thinking I had injured my knees from this I went to the local hospital on New Year's Eve after weeks of tight, swollen and heavy legs, along with pain. They gave me an anti-inflammatory, muscle relaxant and prescription for Tylenol 3. After that was completed I got a local physician who ordered x-rays of my knees and kept me on Naproxen (1000mg a day). I took this for 5 months without hardly any relief. Only took the Tylenol 3 on really bad days.

In those 5 months I had to stop swimming laps as my shoulder began to ache, and eventually the backstroke was not possible. After vacation in April I returned to my gp complaining of ongoing knee pain and now stiffness, especially in the morning in my shoulders (the first night on vacation I woke up the next morning hardly able to move them). He suspected an auto immune issue and ordered blood work, and told me he thought I had PMR. My ESR was slightly elevated, my CRP was 29. He prescribed 20mg of Prednisone and made an appointment with a Rheumatologist. He also ordered a MRI of my knee that came back identifying a chronic full tear of my ACL and severe sprial tear of my meniscus with part of my meniscus protruding out of the back of my knee). I have an MRI of the other knee the end of June.

Within 1 day of taking the Prednisone I felt so much better. And by day 2 I was walking laps around the pool (when I saw my gp my husband had to wheel me in a wheel chair because I had tried to go for a walk and strained my knee so bad I couldn't put weight on it). I jumped right back into doing all the things I could not have but also following a healthy anti-inflammatory diet to lose weight, and try and balance my rest and activity.

When I met with the Rheumy, she diagnosed me with PMR, and by then I had tapered down to 15mg (at my persistance with my gp). At that level I did all the blood work and she recommended I start at 12.5 for a month, then down to 10. She was hesitant because I did not get the full response after taking Prednisone, but my other presenting symptoms lead her to believe I had PRM.

I tried to taper to 12.5 but after about 5 days I had increasing pain and stiffness all morning (afternoon and evening was fine). When I called, her assistant got back to me do blood work again, and if the markers were up, go back up to 15mg. My blood work reported my ESR went down a bit, but my CRP was back up to 10, so I started 15mgs about 6 days ago.

Today I got a follow up call and reported that I am still stiff in the morning with some pain (manageable) but afternoons and evenings are fine. The assistant informed me to stay on 15 and the rheumatologist would like to re-assess me as she is not certain I have PMR. My appointment is July 18th, but I am so confused. I asked perhaps I should have gone back up to 20mg when I had what I thought was a flare, but she said they don't want to increase until I am re-assessed.

I believe I have PMR, but also that it is complicated by the injuries to my knees that will require surgery to repair and reconstruct (so this is also causing inflammation in my system). My response to the Prednisone was amazing in my opinion, but not 100%, more like 80 return to normal activity and reduction in symptoms (I am able to paint wall, have golfed twice, swim/aqua exercised, walk 3 times per week, housework, intimacy, and social connection).

I'm fearful of Prednisone side effects, but have learned to slowly develop patience. Now I'm questioning everything about my diagnosis.

Any thoughts about my situation?

Leslie

[Soraya_PMR]

A quick 80% response to 20mg of pred is certainly sounding like PMR.

BUT!!!! Stop painting walls and doing other energetic stuff! Your poor body can’t take it. Yes you’re on pred, it will reduce your daily inflammation, but you have a systemic illness which won’t go for a few years. You’ve got to work with the pred, or rather NOT work with it. RELAX! Sit about a bit, read a book, watch a film, go for a slow walk. Imagine you have flu, do you play golf with the flu? It’s the hardest lesson to learn, but learn it you must.

The drop from 15 to 12.5 was probably too much. I couldn’t achieve that and had to go back up. You’ll probably settle ok again at 15, IF you rest.

You’re not invincible, that’s the pred talking 😉

Welcome to the forum. When you have PMR it’s a good place to be.

[HeronNS]

I agree with everything Soraya said. You have a serious systemic disease and you have to allow the tissues, which have been very inflamed, time to heal. Go for a walk, by all means, but a more gentle one than you are used to, and don't do arduous activities. Remember, you started this journey by overdoing things! I may have done something similar. After some enforced rest to recover from a broken leg I was back to work, up and at 'em doing all sorts of stuff - and a couple of months later getting so stiff I could hardly stand up after being seated for more than a couple of minutes. I also thought after the pred miracle that I was all better and could do everything again, but after a few weeks I realized this was not the case. Patience and pacing, the hardest lessons for many of us to learn.

[HeronNS]

I've just read your detailed account of your disease progress. I think another problem has been that you continued trying to reduce even when the symptoms re-emerged, because you are concerned about prednisone side effects. You need what you need. There's no point taking pred at all if you don't take enough. The thing is, with a careful, slow, taper (much slower than you tried) and otherwise being kind to yourself, you will be able to lower that dose steadily and surely, and in a few months will look back at how far you've come. I started at 15 mg three years ago. I was down to below 5 within a year. I'm now at 2 and still need that dose to control the symptoms, but side effects are not an issue at this level.

[DorsetLady PMRGCAuk volunteer]

Hi,

Others have given good advice, but have a look at this it may help you understand your illness a little better always assuming it is PMR (most likely) -

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

Frankly, your exercise routine makes me cringe and I suspect that may have a lot to do with your not entirely perfect response to pred - and anyway, many people DON'T achieve total lack of pain whatever dose they are on. 80% is probably pretty good.

The pred only relieves the inflammation in PMR - it does nothing to the underlying autoimmune disorder and that chugs away in the background attacking your muscles and leaving them intolerant of acute exercise. You develop DOMS (delayed onset muscle soreness) in response to far less exertion than previously and then it takes far longer for it to resolve as the muscles don't heal as well. If you then do more activity before it is healed - it never stops. The result is permanent discomfort.

It is not only the fatigue that you have to manage with pacing and resting appropriately - it is your poor muscles too.

[PMRCanada in reply to PMRpro]

Thank you all for your feedback!! I do try to pace things and time in the pool and a couple of walks per week help me feel normal and with sleep. I get plenty of rest being retired and so very thankful for this flexibility. I am still learning about muscle fatigue (usually too late after I have overdone it). I will discuss a slower taper with my Rheumatologist in mid July and try to listen to my body till then,