How do you find the right doctor? | Arthritis Information

Hi Guys...

I'm a new member (I fear) of this august club. Over the past ten years or so I've had increasingly frequent and lengthening bouts of severe pain around the neck, shoulders and top of my legs - a different location each time. I've always managed to tough my way through it expecting that the worst would be over in a few days if I just hung in there and took my aspirin. Between bouts (periods up to a year) I was healthy as a horse and forgot all about the past agony - if I'd thought it would become chronic I would have done something about it earlier. (I tend to stay away from doctors unless it's an emergency.)

Well... Four weeks ago I developed similar pains, this time all around my hips, sides and lower back - and it didn't go away! I'm currently waiting for the lab results on 5 blood tests the doctor has ordered.

After doing my own extensive research on the web, it looks to me very much like PMR. I've got all the symptoms - including a family history of the use of prednisone - a drug I'd really like to avoid taking if possible.

My questions are: How does one find a doctor that recognizes this disorder? And - do you know of anything other than prednisone that is effective in combatting it?

As I gain more experience I will be glad to contribute whatever I learn to this forum. Thanks.

walker0511,

Not sure how one finds the right doctor that recognizes
PMR. I was "lucky" (tho' it took a couple of years
before I got a diagnosis)to have seen my pcp's nurse
practitioner who did the blood test for sed rate and
then some research on my symptoms after I'd seen her.
She called to tell me she thought I might have PMR and
put me on a 2 week trial dose of prednisone. Feeling so
much better on the prednisone pretty much clinched the
diagnosis. Don't know why no one else ever tested the
sed rate; even tho' this is supposed to be a common
condition, seems like the doctors aren't really
familiar with it, or maybe it is because so many of us
are younger than the 70 years that they just don't
think of it.

As far as medication, unfortunately prednisone seems to
be the only thing that really works for PMR. One site I
read said that since it does work so well, that
research is unlikely on the disease. Well,in my
opinion, they need to do research to find something
with fewer serious side effects. Before anyone knew
what I had, and since being diagnosed, I have tried so
many things - neurontin (didn't really do much, and
made me so loopy I couldn't function), ultram (helped a
little, but made me itch, so couldn't take it),
plaquenil (helped just a little, not enough, and also
can have serious side effects), and of course a slew of
NSAIDS, none of which seemed to do anything. It would
be wonderful to be pain free - not sure if that is
entirely available - but I'm not thrilled about the
effects of long term prednisone use. I don't think 2
years on a low does is TOO bad, as one can minimize the
side effects with proper diet, calcium and vitamin D
supplements, and fosamax for the bones, and have eyes
checked regularly for cataract formation. I was only on
prednisone for a year -not long enough to really knock
the PMR out, so have had the aches and pains for a
while, but think it is finally burning itself out. It
just makes me mad sometimes that I had to go for so
long in pain because no one knew what I had, and when I
was diagnosed, the rheumatologist they sent me to at
that time refused to believe the diagnosis and wouldn't
prescribe anything for me. Needless to say, I didn't
see him again, but hurt for another year before being
able to get to a good rheumatologist. It does get
better, so hang in there. But be firm with your doctor.
If you think you have PMR ( and high sed rate would be
an indication - so it'll be interesting to know what
your sed rate is - altho' rare cases can have normal
sed rate), ask for a trial dose of prednisone. A couple
weeks on would be enough to know if it makes you feel
better, and if not, would not be hard to go off. Hope
you get a diagnosis, get to feeling better, and are
able to ferret out what helps you from this overly long
post. Take care.

Reni

Hi Reni...

Thanks so much for your response!

My doctor may have been a lucky shot in the dark. He didn't seem to think my suggestion of PMR was off the mark and even proceeded to feel the sides of my head to test for painful arteries to see if I showed symptoms of Temporal Arteritis - a disorder that frequently accompanies PMR. But I do fall into the common risk categories for age, sex and ethnic origin - so it probably wasn't a stretch for him. Also, Toronto, Canada probably has a lot of northern European stock in the population - which may make it a more common malady up here.

I appreciate your suggestion to ask for a two week trial if he seems reluctant to prescribe prednisone. Also - your confirmation that PMR does 'burn out' eventually. It used to taper off within a few days - but this bout has lasted well over 4 weeks now.

Thanks again... Carole.

Hi Carole

I was fortunate that my GP has been treating me on and off for years with these strange symptoms and he suggested PMR some months ago. Last month his opinion was confirmed by the reaction I had to the prednisolone.

Here in the UK we are not so fortunate to pick and choose our specialists - we have to see the resident consultant (or one of their minions) who is registered with our local health trust. We have to be referred by our GP and have to wait for our appointment. When I get to see my ophthalmologist in December I will probably have waited 8 weeks to see him. In some ways I am envious of the US system where you have a greater freedom of choice and you can see a doctor out of your local area. We are geographically limited to our hospitals. If the neighbouring county has a better doctor we cannot ask to go and see them!

I am lucky that my GP is knowledgeable of the condition and he will refer me to a rheumatologist if he feels that the present drug regime is not suitable.

I hope you can find a good rheumatologist who can find the right combination of medications to suit you.

Love Judi

Hi Judi...

In Canada we have to have a referral from a GP too. I was very lucky to get an appt with a Rheumatologist in about 2 weeks - and very surprised.

The big day is tomorrow....... Carole.

All the best for your visit, Carole.

Love Judi

P.S. Where in Canada are you? My aunt lives in Ottawa.