So confused
Posted , 9 users are following.
Was diagnosed 3 years ago with pmr, then undiagnosed as I did not have scientific proof, long story short finally off prednisone but my crp levels are high 1 week and normal the next. So confused as to what is happening , I'm in so much pain but afraid to go back on without a definite diagnosis. Has anyone else experienced this and what advise can anyone give me. Would be so grateful for anything you can offer.
Hurting and confused.
0 likes, 28 replies
nick67069 deb88821
Posted
You are with pain, not them. If I were you, I would be looking for second opinion/from alternate doctor.
EileenH deb88821
Posted
You can't HAVE "scientific proof" or "a definite diagnosis" - there simply isn't any or way to make one. Medicine and science haven't got that far yet. All you can have is that you have the typical symptoms, other things that cause the symptoms have been ruled out, and that pred at a moderate dose makes a speedy and significant difference to the symptoms.
If you have raised blood markers, symptoms and pred improves them and helps the pain and stiffness by at least 70% overall while nothing else does, then you then have to take the leap of faith and accept pred. And so do the doctors.
I had PMR for 5 years, no pred, I've been on pred for nearly 8 years, it is the only thing that sorts the pain and stiffness. The 5 years were not out of choice, it was a doctor who hadn't a clue, had I seen someone else in the practice it would have been a very different story. No-one I see now disagrees with the diagnosis now.
Judging by the rest of the thread - like ricky, I think you need to find a better doctor. Who knows that PMR doesn't just last 2 years, whatever the Guidelines seem to suggest with their reduction schemes, and who will accept that pred gives you your life back as it does for me. That is what caring for a patient is about.
deb88821 EileenH
Posted
Thanks everyone for all you input and advise. I want to clarify this is not my first rheumatologist it's the 4th. I was first diagnosed by my gp when I was given 30mg. Of prednisone for pneumonia and all my pain started going away within 12 hours. He said pmr is sometimes diagnosed this way, and agreed to try me on 15mg.when He then sent me to a rheumatologist and that's when the trouble started. The rheumatologist was furious told me there was nothing wrong with me and to get off the steroids. My gp agreed to keep me on but after a year he began to taper and when I couldn't get below 10mg.he became upset and didn't want to treat me. The rheumatologist I'm now seeing said I did have it after months of tapering and the parkers showed inflamation but when the blood was taken a week later it was normal and she said she didn't think so. Blood again taken a week later and was higher yet but 10 days later normal, so not wanting to give the diagnosis. I live in the US and it's been my experience that you have to be within the guidelines. Not sure what's going on with me and obviously the doctors don't either.
Again a huge thank you for all your advice, just knowing I'm not alone is comforting. I wish all of you the best on this dreadful journey. DEB
EileenH deb88821
Posted
Guidelines are just that, guidelines - they are not written in stone. You need to find one who knows that the markers are not always reliable. But above all, if pred and nothing else works to manage your pain - where's their problem?
linda17563 deb88821
Posted
Your story it seems to me is all too familiar whichever country we live in!....I have had PMR (or some think so!) for nearly 6 years....when first on Pred felt wonderful (15mg) but tapering even VERY slowly has given me many problems....pain stiffness and side effects from the pred as well. First Rheumie said in the end.....only come back to me when you are at 5mg.....well I never wanted to go back to her, and needless to say coudn`t get down to 5mg....my doctor sent me for a second opinion, which I am now dealing with....he had me reduce 1mg every week....I couldn`t get out of the chair....in dreadful pain.....went back....he said your inflamation is higher! well, yes it would be! He`s another rheumie that goes by markers.......now he has said, lets start at the beginning again, (15mg) and see what happens....he still advocates a quick reduction.....I see him next Tuesday, he expects me to be at 9mg (from 15mg in February) ?I am in pain most days...and vey stiff....blurred vision, neckache.......I am at 11mg....and will NOT be dropping any lower this quick for him....it will be interesting to see what he says....because he has said maybe it`s not PMR after all (5 years!) well, I will do what I want if I`m not happy, and hopefully will lower the pred with the support of my doctor.....afterall when we walk out of their room, it`s our pain we have to live with....
?I will post on here what he says simply because so many of us seem to have this battle.....but I`m not holding my breath for any helpful advice from him, which is sad really....
All the best to you too...
deb88821 linda17563
Posted
Linda I'm so sorry for what you are going through, I wouldn't wish this on anybody anyone. Doctors don't realize that when they do this to patients it not only affects them it also affects their families. When families are told over and over again that nothing is wrong eventually they will begin to believe it. I wonder if I was there family member if the outcome wouldn't be different, but that I guess I will never know. I thought doctors were suppose to listen to what their patients are telling them, I wonder why they no longer do this. The truth of it all is if they aren't smart enough to figure it out then it doesn't exist and the patient suffers
Thanks for your support Linda and I to wish you all the best, Deb
nick67069 deb88821
Posted
We need to come up with guidelines on how to manage our doctors. I am serious. It might be that I am aggressive by nature, but I had no issue at all and got my rheumi to go along with pause in reduction, after my failed attempt to reduce from 5 to 4.5mg. First we aged that we should pause for 90 days. When I went back for prescription ( here in Japan one can only get 90 days pill supply), I explained that my symptoms are still such that I don't feel that I should reduce yet. In spite that my markers were in normal range, based on my overall increase in stiffness and some fatigue, we extended another 90 days.
My approach is simple. I always come to appointment with my records on medication, notes, observations and also have written questions about PMR or activity, etc. It is relativelly short time during appointment, so being prepaired helps to stay on track He listens and thus far we had no disagreement.
deb88821 nick67069
Posted
Hope you continue to do well and thank you for you encouragement. Deb
daniel08939 deb88821
Posted
EileenH deb88821
Posted
There are a lot of doctors who care but sometimes aren't too good at communication. Others just aren't fully aware of PMR and I think it does tend to be a poor-relation in the world of rheumaotlogy. Many have become fixated on there being a lab result that tells them the answer - but there often isn't one for PMR. So if bloods are "in normal range" they think there is nothing wrong - which if course leads to them offending the patient by apearing to dismiss what they say. Some of us are able to get through to our doctors - like Nick - but it does need some co-operation on both sides.