My husband was almost killed on the job over a year ago, 72 hours after this is body started to cease.After a visit to our physician, he determined he had PMR. He was put on prednisone and after 1 day, I saw incredible improvement, but after a year of decreasing this drug, his body is starting to cease and I am ready to leave him because of his mood swings! I need as info and encouragement as possible to stay and help him. Please help us! Lorraine
@lorraine21611
I'm very sorry to hear about your and your husband situation. I was only diagnosed in October I'm 55 and also live in the U.S. This and another online group HealthUnlocked, are the two best groups I have found for good information. Looks of the archives on the sites 4 topics of Interest immediately and then read all you can and ask questions. You should share what dose he's on what type of taper information that will make it helpful for people to offer suggestions based on experience and acceptable practices. I know I'm having a difficult time with my Rheumatologist.
Janet
Hi lorraine21611
What do you mean by his body is starting to 'cease?'...
This is our resources post with a load of sites with good info. But as the others have already said, a bit more clarification would be useful for any of us to comment.
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
Sorry to hear of the challenges that you and your hubby are experiencing but many of us have these types of issues with PMR and prednisone.
Would you think of leaving him if he had diabetes ? Of course not. Well this is a disease process too. He didn't choose to get it and you and him need to deal with it.
So unless there are some other unresolved issues that you have not revealed there is no "good" reason to consider it now when he needs your help and support.
Good luck !
I am 72 years old, have PMR since November 2017. I hurt, I am not a joy to be around about 50% of time, my wife has to help me every day to dry me after a shower, tie my shoes, fix my meals and she does it with a smile most of the time. I know it is a burden on the spouse but when we said "I do" we said " in sickness and in health". We had 52 years of good health, now we are sick. Hang in there and help, your spouse needs you more than ever now, i know, i would be in real trouble if she left me.
All of these comments are SO true. I have had PMR/GCA since 3-15. Constantly struggling with other issues, now. Had ALWAYS been healthy/active. I feel such a burden to my hubby and best friend. At times I am totally unlikeable, too. Without him, I couldn’t survive. Please assist him with love. As has been said, he nor any of us WANT this journey! Work with the Rheumy...I am in US, and my Dr learned some things, too! Best wishes..
@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...
It may be that Lorraine is very busy but also struggling with her situation. I am hoping that she is reading the replies and finding them of help. I am slightly concerned that there has been no follow up from her.
So am I - we can but hope she is reading - and why i added my second response.
As did I yesterday. 💌
He was unable to stand up straight, hold his head up, reach for the phone without excruciating pain. Could no longer get into a bath for fear of not being able to get up and out!
I'm on pred and well - I still won't get in the bath in case I can't get out. Thank goodness for showers!
A little over a year ago, my husband was in an accident at work, broke his wrist and injured his neck. After three days we both started to notice his body was stiffening up. We went to family GP and after short time he was diagnosed with PMR. He was put on 50 mgr of prednisone that day, and within 24 hours he seemed like his old self! He took that dose for a short while and over one year, he was weaned down to 5 mgr daily.he seemed to cope with that dosage, but now he has decreased to 5 mgr every other day and after one week I saw significant changes. No longer able to stand the burning pain of little things such as dressing himself. I researched as much as I could find on PMR and could not find any side effects that outweighed his present quality of life. So asked him to take 15 mgr (3 pills) to seek some relief, One day later was better, so the last 3 days he has done that.Now feeling a little more informed going back to Dr, but also going to consult with an osteopath! I am so confused after every thing I have read that DR. did not do more testing on his blood, no bone density testing and any other tests many of you may have gone through. I would appreciate any knowledge of tests that you all may have gone though, to come to a diagnosis of PMR! thanking you in advance, Lorraine
I do understand this is a disease, and leaving would be a last resort! I have replied to JanetGarrett exactly what had happened to him and dosages of prednisone, but after a year of decreases his body no longer functions with even simple tasks. I tried to get him to go back to our GP over 2 weeks ago but until 2 days ago he refused!
After doing much research, I am beginning to see that his quality of life far outweighs the side effects. He has only been on prednisone for a little over a year and has gone downhill severely over the last month. I am sorry if it seems that I am not coping well with this but,( and I don't know if anybody else has experienced this) but he has become angry, and to the point of verbally abusive! Now I at a point of keeping my mouth shut, for fear of saying the wrong thing. As of yesterday things got so bad I finally got him to agree to go back to the Dr. and friends who have witnessed his behavior, have also suggested an osteopath! Thank you for your reply! Lorraine
I have replied to many of you on this cite and appreciate all your comments! I have stated that over the last few days have done much research on PMR, and have found (since he has only been on prednisone for over a year, and decreased his dosage from 50 mgrs a day now at 2.5 daily this might have been to dramatic of decrease. the change in his demeanor, has literally terrified me, but now I feel confident enough with the information I have gathered to go back to his Dr. and present what I have found, and pray that he is open minded enough to hear and actually look at the information I have gathered! Thank you one and all, Lorraine
Thank you Rimmy, From the research I have done over the last few days, I have gathered enough evidence that his Dr. is reducing his dose far too quickly. I am prepared to present this file I have composed to our Dr. and hope that he is open enough to read it and maybe realise that his quality of life far outweighs the risk factors! So grateful for all your responses, Lorraine