Getting through a major flare
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I am needing input from those with the experience and knowledge about our disease. I am struggling right now. Need help with the next step and ideas about if what is going on is normal for PMR. I had a pretty good flare this summer and waited at least 6 weeks before I realized that's what was going on. At the end of August my doc jumped my preds from 13 mg to 20 mg. Had relief within hours then I wasn't quite as good the next day. Continued to have stiffness in my hips, muscles in my upper back down my arms, but the most painful thing was the pain in my right groin, going down my quads and in the trocanter area of my hip. Before upping to 20 mg. could not lift my foot to get dressed etc. After 20 mg my leg improved but I still have the stiffness and pain. In addition, the tiredness, fatigue and continued lack of energy has been overwhelming. I know some of this could be from the prednisone. I did not realize I would be so impacted by PMR. Even though the preds have helped the pain in most parts of my body, I still have all the stiffness which, comes and goes, and severe fatigue. Have found I am VERY sensitive to Prednisone. I can't clean my house or do much of anything without my back and arms becoming stiff and sore. My dear husband does all the cleaning, laundry, dishes etc. I do a very little and then have to lie down or rest. I try to walk once a day if I can. I usually go about half a mile and it takes me about 25 minutes. Usually nap once or twice a day for 2 hours each time. When at 13 mg before the flare, I had a few days where I didn't have to lay down at all and was feeling pretty good on those days all things considered. I have been diagnosed since January, 2015 and have had maybe 3 or 4 sporadic days where I felt pretty good and knew there was light at the end of the tunnell. My sons, ages 46 and 48, don't understand why there isn't something else besides prednisone to help. Have been uncuccessful at explaining why there isn't. After a month back up at 20 mg, started the DSNS method. Dropped to 18 mg for one day and then back to 20 mg. and this sent my system reeling. I am having severe memory problems, processing problems, finding the right words to express myself etc. Double and blurred vision are worse with higher dose. Doc thinks it's the prednisone but just had me have a CT Scan to rule out anything else. Help....What is my next step? And thanks to all of you. Linda
0 likes, 5 replies
faye______00403 linda82701_USA
Posted
and had really bad attack of sciatica. Sed rate went back to 60 and had to start all over again. I'm at l7mg now and having a hard time getting down even l mg.....There are people on this site that have more
experience and knowledge than I do and I'm sure they will write and
give you some good advice. It just gets depressing and hard to live
with when youj don't seem to make much progress. I think you just
have to stay the course and talk to doctor. Good luck and hang
in there!
pauline36422 linda82701_USA
Posted
i still cannot work out how it works. with such light touch. i dont know how long it works for, she did tell me bear grills has bowens, so do lots of professional sports men, so it must be good. i know i am getting a bit boring going on about bowens. but it gave me such relife,and would like to share with you all so you could give it a go
and get some pain free time. i will start the slow reduction after my visit to gp on tuesday, should i mention it to my gp or not will he poo poo it or not , what would you do
lodgerUK_NE pauline36422
Posted
EileenH linda82701_USA
Posted
I've had PMR for 10 years, 6 of them on pred - I STILL can't do more than a bit of dusting or 5-10 minutes vacuuming without that happening. PMR leaves your muscles intolerant of exercise, they don't recover as well as they should, and while it is possible to increase the amount of exercise you do by building up very slowly anything that requires repeated or sustained muscular activity is likely to cause trouble - especially in arms and shoulders. By building slowly I mean adding maybe 5min to your daily walking programme every week - not every day.
If you can't manage 2mg - and personally I'm not surprised then do 1mg, 1/2mg if necessary. Provided you have white tablets you can get a pill cutter at the pharmacy and it works well with a bit of practice. I feel "strange" for want of a better word the first 3 times I do the single day of new dose then it settles down again so don't give up. Just rest a lot on that day when you are trying the new dose and take it slowly. I know it can be difficult to get 1mg tablets in the US - discuss it with your pharmacist and be persistent - they must have smaller tablets/liquid formulation somehow for children.
As Pauline says - some of what you are describing doesn't sound entirely directly attributable to PMR. The groin pain in particular sounds like maybe trochaneteric bursitis which will need a local steroid shot to get rid of quickly - it will go eventually with higher doses of oral pred but will be slow.
The other likely answer - and it sounds more likely since you say your back and arms are also affected - is something called myofascial pain syndrome. Trigger points form on either side of the spine in the shoulders, about rib level and in the lower back. They can cause muscle spasm which pinches nerves which then causes referred pain - into some or all of arms, ribs and upper leg and groin. It will often - also as Pauline says - respond well to Bowen therapy which you don't have to persuade your doctor to provide. It is sometimes known as Bowtech in the US.
As for your sons - ask them about a cure for the common cold. There is none and eveyone knows that, you can only relieve the symptoms. That is exactly the same with PMR. There is no cure for almost any autoimmune disorder, all you can do is use medication to relieve the symptoms and sometimes persuade the illness to go into temporary remission - but they can all come back, some won't go away at all, Type 1 diabetes being one. Pred is the only drug that manages the inflammation in PMR - because it is the only known drug that does it, others have been tried, none work reliably. That's just the way it is and nothing will change that any time soon. You have a chronic illness, but mercifully it doesn't kill us although it is a pain and very disabling when in full flow. It WILL get better - I barely know I have it now and have learned how to work round it. But then, I've had a lot of practice, have been on crutches for months and unable to walk even into the village, about 200 yds. Now I can walk miles at my own pace without crumbling in a heap.
But it never pays to ignore the signs of a flare - and once youa re down to about 6mg you need to be thinking this could be my longterm level, not always for life but some time. Go too low and if the underlying autoimmune cause is still active the pain and stiffness will come back. And it is always more difficult to get them undercontrol again.
linda82701_USA EileenH
Posted