Pain

[Manchild]

So, I want to understand this disease and what others are feeling. I have been taking Medrol for about four months now, started at 15 and reduced too fast and went up to 24, and have been on a slow taper ever since. Now down to 17mg. At 20-24 I was almost pain free, but not really. I just felt so much better than pre-pred that I was just relieved to be able to walk and sort of function again. Now that things have evened out somewhat, I have more or less the same symptoms when I reduce,, not better nor worse than on a higher dose. Current symptoms consist of back, hip and leg pain that comes and goes, usually worse in the morning but not always. Sometimes worse in the evening. It also seems to have little to do with my activity level( I go to the pool almost every day) Today, for example I did very little and had more or less the same level of pain.

I guess I am lucky in that I can function, but usually with an underlying base of pain.

I just don’t understand that the rheumys expect one to be pain-free on the pred.

I would like to hear from people who have a similar symptomatogy as me who could please describe their symptoms on a 24 hour basis so that I can feel that I am on the right track with my meds, as I really do not want to take MTX suggested by my DR.

I

i

[pollyg263]

i have been on pred for 6 years, hovering around 2.5 and 3 mg, with shoulder pain, mostley from around 5am. but it isnt like pmr pain. more like i would imagin athritis. so what do i do" try to lower my pred hoping it wont flare, take a bit more. or try takineing cocodamol if it is athritis , or got for an exray just to check ?????

[PMRpro Ambassador]

Is your doctor SURE about the PMR diagnosis? When is the back pain? It sounds as if it improves with movement? When at night does it start?

Unfortunately too many doctors are under the impression that being on pred makes you pain free - which is not always true. They also seem to think that is it, take pred and you will be back to normal, reduce pred, get off pred. To some extent it depends on what is actually causing the pain - it may not be "just" PMR, "pure PMR" pain (muscles mostly) probably does respond fairly quickly and almost completely to a high enough dose of pred but you may have bursitis in hips and shoulders as well as tendosynovitis in hands and feet (and other places) that take considerably longer to fade and if the dose is being reduced too enthusiastically at the same time that may mean there isn't enough pred to work well. It took 4 or 5 months at least for my hip and foot pain to go.

However, asking what others feel isn't always a lot of help - we are all different and just because I have the entire day almost free from pain doesn't mean you would. There are add-ons to PMR in the form of bursitis and myofascial pain syndrom that really complicate the picture. And overdoing things will lead to pain - your muscles remain intolerant of acute exercise, you have to learn what you can or can't do and moderate what you can't do. Lifestyle changes are pretty much essential - it isn't about NOT doing things, but doing things differently.

[Constance13]

Yours is not an unusual story, and if anyone really understands this disease (except our experts (PMRpro and Dorset Lady for example) they would be the lucky ones.

I’ve had PMR for nearly seven years and I’m dammed if I understand it!!!

[DorsetLady PMRGCAuk volunteer]

Hi,

This may help you understand things a little better, it does cover both PMR and GCA, but as the treatment and reactions to that treatment are similar hope it helps.

But as PMRpro rightly says everybody’s journey is slightly different; the only constant being slowly does it!

healthunlocked.com/pmrgcauk...

[Manchild in reply to DorsetLady]

Thanks DorsetLady and PMRPro.

I have read everything I can about this condition including Kate’s book, and have seen a couple of doctors.

As you know, the differential diagnosis is one of exclusion, so, no one ever knows for sure, especially when one’s blood tests are normal. I more or less diagnosed myself, and the Medrol did work very well in the beginning.

I have had a back surgery a couple of years ago, so there are some residuals there. However, there are some times during the day when I am pain free, but It usually doesn’t last all day.

I guess what I was seeking in my first post was to find out if many of you have symptoms similar to mine, so that there is some kind of solidarity among us and I can move on with this problem, at least intellectually.

[skipman]

i can relate to everthing you have said some mornings the pain in my shoulders will wake

me up yet another i hardley have any some days i feel complety exausted no set pateren

i have been as high as 25mg and as low as 4mg but im having a flare at the moment was at 4mg but had to go back to 15 mg i wish i could understand it as well but as pmr pro says we are all different hope you feel better soon

[daworm]

I too had a great reduction of pain and stiffness at the initial dose (20mg) I’m trying to stay at 8mg currently, had to go up 1 mg for some stressful days..I’ve been on pred a year and a couple months...no, the pain and stiffness doesn’t go away, I perhaps thought it would, but it’s still there, just manageable with the pred...so when do we know “it” has run it course?? One day we just wake up and feel perfect or what? Plus now we deal with adrenals trying to kick in, a whole different ball of wax...but it better than the first month before pred so we can be thankful for that....

[PMRpro Ambassador in reply to daworm]

"so when do we know “it” has run it course??"

You are able to reduce the dose of pred - hopefully to zero - without problems. There are no easy answers - you have to keep trying to reduce a bit, when it works you stick for a few weeks and then try again.

[Manchild]

Hi skipman,

I feel for you all and I guess we are all in this together.

I hate to say it, but “misery loves company”. Let’s all try to figure this out and get better sooner than later.