My husband has been diagnosed with PMR, need as much info as possible!
Posted , 13 users are following.
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
1 like, 31 replies
JanetGarrett lorraine21611
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@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
lorraine21611 JanetGarrett
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EileenH lorraine21611
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He absolutely CANNOT taper from 5mg per day to 5mg every other day. It MUST be done 1mg at a time. Never mind the PMR but his adrenal glands have been on a holiday while he has been on higher doses, now he must reduce SLOWLY to let them come back into action.
Your GP is wrong and has been all along - if his diagnosis was PMR the starting dose should have been not more than 25mg/day, 50mg is a dose for patients with suspected GCA. And someone with GCA belongs under the care of a rheumatologist. And to leave a patient on that sort of dose without blood tests and other monitoring is nothing sort of negligent. And if he causes problems - I'd remind him of that.
The long term effects of steroids below 10mg are NOT serious. Show this to his doctor:
https://www.medpagetoday.com/rheumatology/generalrheumatology/66912
it is a study done by one of the top US experts in the field who is really concerned about doctors not allowing patients to stay on pred at a high enough dose and for long enough. PMR lasts about 6 years on average and it takes most patients a lot more than a year to get to 5mg.
If this doctor won't help demand another opinion.
The mood swings could very well be due to the precipitate reduction in the dose of pred leading to the onset of adrenal insufficiency. He must also be terrified - I would be if I didn't know all I do.
lorraine21611 EileenH
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EileenH lorraine21611
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" I still do not know how any one but Drs, know how to taper off this drug?" Sorry - really not clear what you are saying/asking.
We as patients, hundreds of us on 3 different forums and in the UK charities, have exchanged information from papers in the medical literature and personal experience with good and less good doctors to work out the best ways of tapering. The consensus is that going slowly is best - and there are many doctors who do so. But the basic information is available in the Guidelines for management of PMR:
https://www.rheumatology.org/Portals/0/Files/2015%20PMR%20guidelines.pdf
a link for which was in the original link to our resources post I gave you. It is issued by the American College of Rheumatologists and its European equivalent - so wherever anyone is they have nationally approved advice at their fingertips. If they bother to look.
In that resources link is also a link to this paper:
http://www.rcpe.ac.uk/sites/default/files/quick.pdf
which is by a UK expert and his team.
Anyone who uses these 2 resources will see the correct starting dose and find suggestions for tapering. From 10mg the recommendation is 1mg per month - in both resources. The ACR/EULAR recommendations say "Recommendation 4: (PICO 6) The panel strongly recommends individualizing dose-tapering schedules, based on regular monitoring of patient disease activity, laboratory markers and adverse events" i.e. if the symptoms return - you have reduced too far or too fast.
Your doctor appears to have not even looked at these but used an approach for which there is absolutely no evidence - and which exposed your husband to unnecessarily high amounts of corticosteroid to start with - and then tapered in a way that is equally unique (I can't think of a polite way to say what I want!). Then, from 10mg the considerations are not just the PMR symptoms returning but also the return of adrenal function. This is universally agreed to require slow tapering after use of high doses of pred for more than a short period. He has ignored both concepts.
I don't expect him to have read this:
https://www.medpagetoday.com/rheumatology/generalrheumatology/66912
as it is relatively recent but it emphasises something that needs to brought to the attention of all doctors who think they know about managing PMR: it is NOT a short term illness but the average duration is nearer 6 years than the 2 so many claim and a dose of 5mg is required for many patients for years - not months.
As for how this doctor arrived at the diagnosis - I have no idea other than to say it is usually a clinical diagnosis, made on the basis of symptoms and a few tests to rule various things in or out. There is no definitive test to say "This patient has PMR". There are many causes of the symptoms we call PMR and they include cancers - for which other tests will act as signposts. The PMR we discuss on this forum is characteristic in responding well to a moderate dose of corticosteroid - 15-20mg/day is often enough, a few patients need 20-25mg. Once you start to use high dose steroids the waters are muddied because other things will respond to such high dose steroids as well.
I would suspect he has a belief, possibly gathered from personal previous experience, that if you use a very high dose of pred at the start it "stops" or "cures" the illness. It doesn't. Pred cures nothing, it manages the inflammation until the actual cause of the symptoms, an underlying autoimmune condition, burns out and goes into remission. Which for 75% of patients it does in something up to 6 years. Nothing will change the time YOUR PMR lasts - you will need pred as long as it does.
Does this help?
JanetGarrett EileenH
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@EileenH
thank you for such a wonderfully thorough response with so much information and links. I wish I could send your entire response to my rheumatologist but as it stands after my email response to him yesterday I'm not sure whether he's still going to be my rheumatologist after today. It's sad that we can't have a collaborative relationship on such an important illness and more importantly our life and well-being. thank you on behalf of all of the newbies :-)
Janet
EileenH JanetGarrett
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mary19068 lorraine21611
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Hi lorraine21611
What do you mean by his body is starting to 'cease?'...
lorraine21611 mary19068
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EileenH lorraine21611
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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!
EileenH lorraine21611
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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
rocketman42 lorraine21611
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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 !
lorraine21611 rocketman42
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MR._BELLA lorraine21611
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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.
judy93591 lorraine21611
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