PMR in the USA: just thought you'd like to know how many we are...

Hi Layne,

I agree that the attention to this disease is good, especially for people like those of us, who suffered for quite a time with no idea what it was and thoughts of no end in sight. Reading the article might help those who have pain with no idea what it could be.

My two friends who are in remission tapered off the Prednisone and then felt back to normal again. I am curious what those in this forum who have experienced it have to say.

Perhaps the rheumatologist in the article means that the symptoms are treatable. For me, they have been, as I have had not pain since going on 20 mg Prednisone 18 months ago. Am down to 5.5 and pray that I don't get a flare. I can see that there are others, such as yourself, for whom the treatment appears not to be working very effectively. I am so sorry that you still have so much pain, despite the Prednisone.

Paula

Like Paula, I am at 18 months (15 months on Pred) and have tapered down to 5mg (for my 140lbs/14 stone) with but a manageable level of symptoms.  I still have a way to go, hoping to be off pred in 6 months but that will depend on my fortune.

I still deal with pain while squatting to pick things up, and have to move more slowly when squatting.  I still have serious range-of-motion issues in my shoulders and sneezing causes sharp pains in my ribcage region. 

5mg seems to keep the fatique away however, much better than at 4mg!

It all depends what you call "treatable". Technically it isn't "treatable" in the sense of curative treatment - the symptoms can be "managed" fairly well using pred and lifestyle changes. You can't just take pred and assume everything will be back to normal - it won't and it will vary from person to person. I still have PMR (I think, I did last time I tried to reduce) but I have just done a 11-day pretty heavy duty tour in China with very few problems. It has been hot some of the time, there have been longish walks and many steps up and down. Had I known I probably wouldn't have booked - but I didn't and it has been much better than I could have hoped for.

You should NOT be in pain and agony for any length of time once you are on pred - of course some people are worse than others, but for the majority well managed PMR should be an inconvenience and possibly limit your style a bit. If you are in such pain - you are not being managed properly by your doctor. 

If you take your pred early in the morning and then settle down for a couple of hours before getting up you will find that "getting going" is less painful. Warmth is helpful - an electric blanket used before getting up is a useful trick. Gentle movements in a warm shower too - because once you get the blood vessels dilated the blood supply to the muscles improves and so does their function and movement continues the effect. You will find information like this on the forums as well as on the northeast of England PMRGCAUK website.

There was a forum in the USA several years ago - but it got hacked in some way and warnings came up it was not safe. Some of the people at the time came over to the UK forums and now increasing numbers of US patients are coming here. There is another forum somewhere, yahoo maybe, I can't remember - but those of us who have investigated it felt it is a bit strange.

But PMR is PMR - one doctor in the US told a patient who objected to being reduced in dose to zero very quickly and quoted the work from the Bristol rheumatology group that "they do things differently in Europe" ! PMR only responds to corticosteroids and it is a chronic disorder - and nothing any doctor can do at present can change that. Things may change in the future and work is being done - but it all takes time, money and effort. But we're getting there!

Thank you for your words Eileen and others sharing.

I'm SO EXCITED a to hear your time in China wasn't impeded by PMR! Yea!!!  Gives me encouragement too. 

Interesting about the warmth you recommend and I'll try the slower mornings...used to be mornings were my favorite and most productive times! Especially to exercise! Ha. 

I know range of motion is very important to keep, so I do slowly stretch my shoulders and hips but not in the painful direction of course. 

Dan, I only found this forum becauses I googled PMR it hurts to squat! 

Now I can squat!!!!  I found a good (so far) physical therapist, he has been strengthening my glutes and teaching me how to squat. Sometimes it still hurts my back since those muscles are still so weak and I'm training them to accept a now posture. 

So to squat... Squeeze your butt, as you bend knees do not let them fold in nor go over your toes, put tension in your legs like you are pushing them outward, keep back straight, not arch either way, then SQUEEZE butt to raise up!  It's taken a few weeks to learn this but so glad I don't fear the squat as much. Picking up and placing my 4 (yes, 4) dogs food bowls has gotten better.  

Hope that helps you too Dan.