Bloated feeling even after reduction

That really is good to hear - especially the managing BS levels on pred!

I was diagnosed at 76 yrs old and got immediate relief from 15 mg prednisone. I am now 80 , soon to to be 81. I was able to go thru knee replacement on 6 mgs a couple of years ago. I had cataract operation before PMR. I do have ulcer medication because of ibuprofen before PMR diagnosis which was much more harmful than pred. I am able to have an almost normal life because of pred. I am currently on 6 1/2 mgs, reducing slowly every 6 to 8 weeks to 6 mgs after a few flares. Prednisone is a miracle drug for PMR pain from inflammation. My weight is less than when diagnosed thru careful diet.

That isn't necessarily true.

I also suffered steroid induced myopathy during the 8 or so months I was on Medrol/methyl prednisolone. It didn't manage the PMR well either for some reason even at 20mg - all I got were a LOT of very unpleasant adverse effects (including a superb black beard) and became typically Cushingoid. I had previously had no problems on prednisolone but that isn't available here. I was switched to prednisone and worked hard on weight loss using a low carb approach. I lost 35lbs of pred/PMR associated weight, started walking (on crutches at the time as Medrol plus a quinolone antibiotic had lead to achilles tendonitis) and my leg muscles recovered and are fully functional now. It took maybe a year, not more.

You are welcome to your opinion but frankly - a lot more people end up in trouble because of longterm opiod painkillers than do with pred. That is beside the point that if they help - it almost certainly isn't pain associated with the PMR but something else.

There is a selection of new biological drugs which probably will lead to a lower use of pred in PMR and GCA. Tocilizumab has been approved for use in GCA and is also used for difficult PMR in the USA. However, biologics are very expensive and it would cripple healthcare systems (and the users) to have to pay the US$17K annual cost for all PMR patients. It has some immediate adverse effects that make low dose pred look an absolute pussy cat and there is no knowledge of the potential long term effects on the immune system. The adverse effects of biologics can be catastrophic if the patient develops an infection the immune system can't fight off - and in view of the developing situation with antibiotics that is something that cannot be ignored.

I understand glucocorticoid-induced muscle wasting can be reversed by increasing physical activity in patients taking a low to moderate dose of pred. My doctors blame everything on pred including the fact I needed a new hip. Without pred I would not have had a life the pain of the PMR was excruciating.

And in most cases can be prevented in the first place by appropriate physiotherapy exercises. So if anyone or anything is to blame one feels the supervising doctor must have some culpability.

It's pretty hard to exercise when your legs go out from under you due to the myopathy. Prednisone is a damaging drug. Anyone who thinks or says otherwise is in denial. However, at the present time, it is the only treatment for PMR. I think that should change and more research into less harmful drugs should be done.

Perhaps you are not taking enough prednisone. Another drug triggered my PMR, causing my legs to buckle so that I had to crawl up the stairs. According to Google, myopathy can be caused by inflammation, PMR?

You need proper physiotherapy advice and probably hydrotherapy.

I realise you think we are all crackers - and in denial. However, I can assure you I have seen all sides of PMR, GCA and pred, good and bad. I'll accept the downsides of pred - no side effect of pred is worse than the ultimate adverse effect of GCA. Being irreversibly blind is far worse than not being able to walk very far. And that is the very real risk.

I think you would be hard pressed to find any drug that was not damaging in some ways, some a lot worse than pred.

There are other things, like diet and certain herbs. But doctors do not take the time to discuss those things, it's easist to just give out pills. Not saying prednisone does nothing for PMR, and I am well aware of the dangers of GCA, but there are other, natural, alternatives to fight inflammation.

PMR is just one illness in many. Some illnesses have some awful if not terminal symptoms. Things that will be talked about are such things as cardiac problems and cancer as a large percentage of the population have them. At least we have something that is recognised not like some people who have awful diseases which are virtually unknown.

I am a cancer survivor. I had surgery, treatment and then it was over (hopefully). I also had cardiac problems and had carotoid surgery. That too was over after the surgery. The thing about PMR is that it is long term. Never feeling quite well, suffering the side effects of the steroids, etc.It impacts your life for a long time and effects your family life, your social life, etc. For some people years. And, PMR, is virtually unknown unless someone in your family or circle has it. Its hard for others to understand what you're going through, which makes it sometimes isolating. I find this more challenging than cancer or the vascular surgery.

Rosarita, I can so relate to how you feel. I am also a cancer survivor and in 2012 I was near death from a small bowel obstruction and not expected to live. That had a long recovery and I needed another surgery to correct the resultant abdominal hernia . I think that whole illness triggered the PMR.

Before that I was very active. The challenge I found with PmR was the temptation to get "lazy" and not move. I found if I just pushed myself a little more and exercised I felt so much better. I also have breathing issues from solvent exposure and restrictive lung disease from corrected scoliosis.

I was a nurse-anesthetist for 37 years and an RN before that and have no qualms about the steroid doses used in PmR . I actually get annoyed when a layman says how horrible steroids are because their bad name came from excessively high doses used 50 years ago. They are life saving and the side effects can be managed as hundreds of FORUM members have done.

I am so sorry to hear you went through so much. I guess what I was trying to say is that this is such a long term disease and it does erode your quality of life. I guess as a nurse you are well aware of other drugs that are much more damaging than prednisone. I still wish that a better treatment could be found. One that does not have the side effects that are so hard to live with. I wish you well and hope you stay healthy from now on.

My doctors (3 of them) have diagnosed it as steroid induced myopathy. And one of those doctors prescribed the steroids, so she is not opposed to them for treatment of PMR. But there are people like me who have more serious side effects than others. I was originally on prednisone and my rheumatologist switched me to medrol to see if the change helped my myopathy. It was better for a while, but the weakness is still there. I am walking with a cane and before the steroids I was extremly active. And even during the time I had undiagnosed PMR, so it is not the PMR, it is the steroids.

perhaps you posted this already but how long have you been on pred and what dose are you on currently? thanks

I walk with a cane because of a bad hip. I too was very active before and somewhat during the onset of PMR which gradually got worse.Pred does help me but if I do not stay active the PMR takes over.

I was on prednisone, starting at 30mg, since September 2018. I was switched to medrol in February and am on 8mg now. My rheumatologist is trying to taper me off altogether because I have such serious side effects.

It's frustrating when you've been active. It's true we have to keep moving or it will get worse. It is important to strengthen the muscles. Hope you feel better with time. We all will make it somehow, so hang in there.

I hear you about feeling 'isolated', because others do not understand what you are going through, and this is why this site is a blessing to us all, as we all do understand what you are going through, and we have amazing people on here like Eileen who have a wealth of knowledge on the subject. If it were not for prednisone, I would have curled up in a ball a long time ago and given up on life because it was too painful. Prednisone allows me to get on with life at a slower pace.

I went through a few months of muscle/ bone problems last year. I thought my days of walking without a walker were over. I went to my brothers Chiropractor who shot at them(my leg muscles) with a very old looking piece of equipment out of the arc, and I walked up the stairs, out of her office and I have not looked back. (muscle wise). I have no idea what my problem was, neither did the Doctor. Never give up overcoming your problems.

I am also a firm believer that appropriate excercise and stretches are soooo beneficial, and that is hard for me to say, as I am the laziest person on the planet.

Of course, some other health problem always crops up, like my current case of bloa,t so I am now looking for the magical cure for that.

Take care Rosarita. Look for new ways to enjoy life.

Which form caused the worse side effects - prednisone or medrol?