My husband has been diagnosed with PMR, need as much info as possible!

@lorraine21611

I would add for the sake of the discussion that I was married for 32 years in sickness and in health well he threw the health part out the window. So now I am divorced dealing with some serious health issues and now the PMR on top of that while I live alone. So I want to say from my perspective it's not something you want to do to your spouse. We are already dealing with enough.

Hi Lorraine

You have obviously been having a really 'bad' time - and the fact your husband had such a terrible experience at work probably 'triggered' the PMR he has now. This is not only hard on the person who has this themselves but can be very difficult for those around them - particularly their partners - many of us know all about that !

A couple of things - I assume when you say 'cease' - you mean 'seize' as in 'seizing up' - if so and your husband has only been tapering for a year then he may have done this far too quickly. Most people have PMR for the very least time for about 2 years and many are likely to have it for several. Unfortunately many doctors are fixated on getting people off Pred far too quickly as they are worried about side effects. However new evidence shows that apart from cataracts which can develop fairly quickly - in some people- many of the side effects are either manageable or not permanent - or we don't get them at all !.  I am deducing your husband is probably now on too low a dose and his pain has returned. If this is the case he would no doubt be much more pleasant to be around if he is on a dose which controls his pain/stiffness symptoms - some of the others like fatigue - which can be bad at times - just has to be managed by 'pacing' ourselves. 

There are several very experienced people on this forum who can point you to all the most recent info and research papers - which can be shown to your husband's doctor if he needs convincing - but returning to a higher dose of steroids is almost certainly what is required.

This is a difficult time - but take heart it is  not insurmountable if your husband pain dissipates and he can learn to control his mood swings - but he may need some other professional health assistance with this too. For many men whatever else is going on in their lives - loss of their job is an unbearable thing and this strain can be inflicted in very inappropriate ways on those closest to them - sadly this happens a lot.

In the meantime you need to also take care of yourself and spend some time doing some things you like - and remember there is no way you should ever be 'badly' treated.

Best wishes.

I think Rimmy has cracked our confusion. If she is right your husband has reduced the pred dose too far. Of course, his doctor may not realise either or did not explain properly, but he is not reducing relentlessly to zero on the pred. He is looking for the lowest dose that gives the same result as the starting dose did - the pred does nothing to the illness, it only mops up all the inflammation that leads to the stiffness and pain If you don't take enough the small amount left over each day builds up until the patient has a proper flare and is back where they started. The cause of the symptoms we call PMR lasts for at least 2 to 6 years for 75% of patients - although men often do much better than women and it may burn out sooner.

I'm assuming the mood swings are a new thing as they can be due to pred but it would be more likely at the higher doses. However - you do need to see it from his point of view: he had a very traumatic experience and became ill. The pred sorted that out and he probably thought that was it - but now he is back where he was. Chronic illness is a hard master and when it is a painful one that disables you it is even worse. Depression is common as a result - and depression can cause mood swings. Add to that he probably feels he has had his life taken away again - no wonder he is like a bear with a sore head about the things he can't do. Maybe it sounds silly - but you go and put on a jacket that is 3 sizes too small and so tight you can't move your arms and then sit on the toilet and be faced with the question "How do I reach my butt to wipe it?". Been there, done that.

Living with someone with a chronic illness is not easy - and I speak from experience of both sides - but you need to persuade your husband to go back to the doctor and get the right dose of pred sorted out and possibly other help if he is depressed, although being pain-free should help that greatly. 

So - your problem now is how to persuade a man to go to the doctor again...

Your husband is probably suffering from severe stiffness and bone pain which can happen when getting to low doses of preds. I recall a forum member experiencing this after getting to lower doses of pred and coming off them. Apparently this eventually goes away....also the mood swings are a possible withdrawal effect which apparently eventually goes away aswell. I would help your husband get through this adverse part of tapering...which i have come to know through the forum does not happen to everyone taking and tapering pred....he will really need your help and support to get through this ....

Your doctor should have referred your husband to a rheumatologist. This is the procedure once someone has been diagnosed with PMR by a doctor. The rheumatologist will will monitor the PMR, prednisolone and tapering. You should ask your doc why your husband has not been referred to a rheumatologist.