Can't convince doctors that normal blood work could still be PMR
Posted , 8 users are following.
I am so frustrated. I have been really suffering. Had all the blood work and was normal. Went to a Orthopedic, had injections in hips and pain got worse and worse, especially at the injection sites. Convinced Ortho to give me oral steroids and within 2 days the symptoms completely disappeared! Now my primary tells me that she does not want me on these drugs since I have diabetes and osteoporesis. Took the meds away from me. My doctor claims everything gets better on steroids.
Pain and stiffness is reappearing. She still says my blood is normal and how else can Rheumatologist tell if your getting better if no blood normalization occurs. She says she has several patients with PMR and this is how the Rheumatologist determins to lower dosage. She also says I am too young....I am 63. I am so discouraged and don't know how I am going to contiue this way. Can anyone offer advice?
0 likes, 14 replies
Anhaga patricia66469
Posted
Patricia, I think you should try to see another doctor as the one you have doesn't seem to understand PMR at all. You are certainly not too young at 63. Inflammation often does show up with PMR but in a large percentage of patients it does not. In my case, for example, my first (useless) doctor didn't think my blood results were significant because of my age, 66 at the time, and it was a later doctor who felt although they weren't out of line for my age - see, my doctor thought 66 was old and your doctor thinks 63 is young
- it warranted further investigation. She goes completely on my symptoms. Your quick and full response to the initial trial of oral steroids is one of the diagnostic tools used to confirm PMR. Diabetes and bone thinning can both be controlled, mostly thorugh diet and exercise, even when you are on the fairly low dose of pred which usually works to control PMR. I'm not sure where you live but you'll get some good advice when the UK and Europe wake up. You are not alone.
patricia66469 Anhaga
Posted
Thank you for your reply. I live in the sticks! I really want to go to a nearby big city rheumatologist. Orthopedic gave me 5 tablets @ 50 mg of prednisone. Second day the symptoms were completely gone! I broke the last 4 in half and took them but immediately felt the aching coming back around the whole pelvic girdle, especially the front of the thighs and hips. It has not returned to the worst yet...will have to wait and see what happens before my next visit to Ortho and primary. I can see where the symptoms would guide the treatment. Too bad we can't all treat ourselves!
EileenH patricia66469
Posted
Mind you - 50mg is FAR too high, 15-20mg is the usual starting dose and that may be the reason your PCP says pred cures everything - it would mask almost everything. However - what you DO need is a rheumatologist, whatever your PCP thinks. Leave it to them to decide whether a raised ESR/CRP is needed to monitor the patient's progress rather than symptoms - which are always reliable!
FlipDover_Aust patricia66469
Posted
LOL, no I didn't say nasty words, but I should have - appalling treatment!
Post was sent for moderation as I put the link to the Bristol paper - it's pinned at the top of the PMR page - go find it - give it to your GP!!!
EileenH patricia66469
Posted
Time to ditch her - or provide her with some evidence. The 63 bit is a piece of nonsense - the guidelines say "over 50". You will find a link to various documents here:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
You may have to look a bit for the age guidance, I'm fairly sure it is in the "Bristol paper". I couldn't find age in a quick look at the concise guidelines but it does give the diagnostic approach - which is assess the response to 15mg of pred. Have you seen a rheumatologist? Your GP needs to do some learning - NOT everything responds to steroids, fibromyalgia doesn't for a start, and certainly not at 15mg. She needs to have a read of the Bristol paper - it is aimed at her and her like, GPs and PCPs. And if she spends a bit more she needs the Oxford Rheumatology Library book by Dasgupta and Dejaco, Polymyalgia Rheumatica and Giant Cell Arteritis.
The most difficult thing is the blood markers - up to 20% don't have raised ESR or CRP but they do dispute that. I know plenty of patients and doctors who don't though.
I know the next thing she will say: It's British work, the US does things differently. No they don't, all the work if done together these days, ACR and EULAR collaborate.
But then I'll look for US work for her - there is plenty.
Anhaga EileenH
Posted
This morning at the dentist's office as the hygienist and I chatted (I of course with some difficulty) she told me one of her co-workers is on her second bout of PMR. The poor woman was initially treated about five years ago with a start dose of something like 60 mg. She weaned herself off after two or three years. Now PMR is back, her GP refuses to treat her, says she doesn't know enough about the disease and won't prescribe pred so the patient has to wait probably for months to see a rheumatologist. The more I hear about other people the luckier I feel. I might have had to wait a while to get a GP who was competent enough to recognize the disease but since then I feel management of my condition has been ideal. It's disheartening that so many doctors seem not only poorly informed about PMR/GCA but also incapable of educating themselves.
EileenH Anhaga
Posted
I have heard some utterly mind-boggling things in the last few weeks. I really though it was getting better but now I'm wondering!
Someone on the HealthUnlocked forum was diagnosed with GCA in April. She has reduced to 10mg since then, with a couple of flares (are we surprised?). A few weeks ago she didn't feel well, headachey and so on, and went back to the rheumatologist. She only saw the nurse who dotted in and out of the doctor's room and said "We don't like to keep patients on pred long term and we'd like you to start on azathioprine. You'll need some blood tests and come back in a few weeks," Duly she turned up - again didn't see the doctor but only the nurse again. But she is to start aza, staying at 10mg pred for the moment.
I don't know whether to laugh or cry. Did that nurse tell the doctor this patient doesn't have RA, she has GCA? Does the doctor know the difference? Do they know that the ONLY medication for GCA at present is pred? That DMARDs of any sort and aza in particular don't get much of a mention for steroid sparing in GCA?
A patient with GCA started at 40mg and has succeeded in getting down to 10mg after 8 months - and that isn't good enough? The world is in the process of going mad - but they don't have to join in!
Daniel1143 patricia66469
Posted
Youve gotten a lot of good advice here. Most important: 20mg of prednisone to start and a carefully prescribed protocol for how to proceed from there.
ricky23486 patricia66469
Posted
I had completely normal blood markers - and severe pain which went away within one day of being on 15 mg of prednisone!!!!
GP suspected PMR. Rheumatologist confirmed PMR.
I agree with the others on this list who are encouraging you to find a knowledgeable and up to date rheumatologist ---- as fast as you possibly can
patricia66469 ricky23486
Posted
Thanks Ricky. I don't feel so bad about myself and feeling like a nut case
I had shingles 3 times and that is a viral thing so maybe that started something somehow. I hope you continue to improve and I will seek a rheumatologist after my return to Ortho for follow up on MRI of hips and pelvis. Thanks again.....
marian-colorado patricia66469
Posted
dboza patricia66469
Posted
I was diagnosed w/ PMR exactly one year ago this month by my longtime internist. I had the pains in my hip girdle, shoulders, neck and arms. It was especially bad in my legs. I went to the ortho ( I had previously been treated for knee and foot problems all due to my flat feet) and was given celebrex for a touch of arthritis in my knees. Didn't help at all. Thank goodness, I mentioned my pains to my good friend who is a neurologist and he told me go to my regular physician. My doc took my blood tests and prescribed me 3 days of 20mgs. prednisone and call her after the 3rd day. My symptoms went away almost immediately, I felt like I had been healed by a miracle worker. My doctor said there is no "real" test for PMR, just the symptoms and the blood tests. My sed rate was way up. She determined I had PMR and I was 58 years old at the time. She also believes the "viral" infection I had 24 years ago was also PMR. The symptoms were the same and the rheumatologist I saw back then, tested me for many diseases, lyme's, lupus etc... and decided it was a virus and it would burn out. I was given strong NASIDS for the pain. I tapered down gradually and finished the prednisone with no flare ups. I do get achiness, but my sed rates are normal and I just take naproxin sodium for the stiffness and that is gradually going away. I am lucky that I did not have a bad reaction to prednisone and didn't get heavy or moonfaced. If anything, it gave me energy and helped with my Raynaud's. I worked the whole time at our restaurant and it involved a lot of time on my feet and stress. I would go see another doc if I were you. I strictly followed my doctor's instructions w/ my dosages and did not try self dosing. I have since figured out in my maternal family many of us have chronic auto immune disease.
patricia66469
Posted
Thank you for all the replys. I was thinking that I have had shingles 3 times and maybe this is part of the reason for PMR since I think this is a viral issue. I have been off of the prednisone for 4 days and have terrible achiness but not the horrific pain before the 50 mg of prednisone. Waiting another week to go back to the Orthopedic and see what the MRI of the hips and pelvis says. Makes me feel so much better to know that maybe I'm not crazy!
EileenH patricia66469
Posted
Shingles is due to an awakening of the same virus that causes chicken pox - when you have CP as a child the virus remains in the body and becomes dormant in nerve endings. Sometimes it becomes active again and causes shingles. You can't catch shingles - you MUST have had CP when you were younger.
PMR is not a viral problem per se - it is the symptoms of an underlying autoimmune disorder. There is no single cause of PMR. It is thought that many different things put stress onto your immune system and eventually a straw breaks the camel's back - and it goes haywire. It is no longer able to recognise your body tissues as "self" and attacks them causing damage, inflammation - and pain and stiffness. There are many autoimmune illnesses, PMR is quite an acceptable one in many ways - it does not cause permanent tissue damage as something like RA or lupus does and for 75% of patients it goes into remission in something like 2 to 6 years. In the meantime - pred will allow a reasonable quality of life as long as you can find someone to take you seriously.
However - you are quite right in that it is thought that there is a form of PMR which develops as the result of an acute illness, a reactive form. There is also a form of inflammatory arthritis which is much the same, reactive arthritis. Both of these will settle down far sooner than the usual sort of PMR - one can alsways hope you are one!