Upset: I live in small town USA. I go to a... - PMRGCAuk

PMRGCAuk

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Upset

mo3go7 profile image
12 Replies

I live in small town USA. I go to a rheumatology practice in a larger city & unfortunately my doctor died in a horrific car accident a while back. They can not find a replacement so I see rotating rheumatologist who comes in from larger cities in other states for short times to fill in. In June, at my 6 month check I saw a wonderful, caring rheumatologist who I wrote about in a previous post just a couple weeks ago. Yesterday it was my 6 month check again & I saw a different rheumatologist. I was expecting this dr to say hold tight & try to reduce slowly again in a few months. I left there feeling so upset!!

He said 3 years is too long to be on prednisone, I need to reduce to get off it immediately. He wants to see me back in 3 months & if I haven't been able to reduce he wants to switch my course of treatment to different meds. I said I am only on 4 mg, my recent DEXA scan showed no changes since last one in 2017 and IT IS controlling my pain/inflammation. He said long term prednisone causes permanent damage I need to be off of it as soon as possible. He also wants me to have blood work done if I have a flare while reducing to see if my markers are high which shows whether I need to be on medication at all. I wanted to tell him that my blood markers were never high. That my original rheumatologist was treating per my symptoms & meds results. I said nothing more to him because obviously he wasn't listening to me and in my opinion knows nothing about PMR. I made an appointment but I won't go back if he is still there. I'm still upset & just amazed a specialist in this field has such different opinions from others I have seen in the past. Any thoughts?

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mo3go7
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12 Replies
CT-5012 profile image
CT-5012

So sorry you had to meet this uneducated clot. Do you know where the previous rheumy is based and could you get there? Hope you get better treatment soon. Virtual hugs and good wishes.

mo3go7 profile image
mo3go7 in reply toCT-5012

No. She was from two states away. Just doing a visiting rotation. Maybe she will be back sometime, but I don’t know how that all works.

HeronNS profile image
HeronNS

I agree, avoid that doctor like the plague. Are you still able to get the pred you need in order to carry on as you are?

mo3go7 profile image
mo3go7 in reply toHeronNS

Yes, I’m good with the prescription for 6 months. Gives me some time to hope he moves on.

PMRpro profile image
PMRproAmbassador

Unfortunately we meet doctors like him all the time. Will your PCP help you at all? You can only reduce from there at the rate your adrenal function will let you anyway, you can't stop it cold turkey. You are at a really low dose that isn't posing any particular risk. now - he needs to brush up on his endocrinology. Is it too much to hope it won;t be him next time?

mo3go7 profile image
mo3go7 in reply toPMRpro

That’s my hope, he will be gone next time! Unfortunately my PCP never thought I had PMR 3 years ago, but sent me on to the rheumatologist to find out. He is aware now & is supportive but it’s not his specialty.

PMRpro profile image
PMRproAmbassador in reply tomo3go7

Doesn't need to be his specialty - just provide the script for you to carry on as you have been as you have done a great job getting to 4mg!

Raven1955 profile image
Raven1955 in reply tomo3go7

I completely agree with what PMRpro said. I think the best thing you can do in the next 6 months is having a discussion with your supportive PCP, explaining your success and how you're at loggerheads with the rheumy, and asking him/her to write your pred prescriptions. It'll be hard for your PCP to say no.

I ran into the same type of problem with my 3rd rheumy in northern Minnesota. I went back to my physician and had a spendy 45 minute conversation that resulted in her writing prednisone prescriptions for me as needed. Take control.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Unfortunately these things do happen - some Rheumies seem to have an aversion to Pred which is extreme.

If you feel you have your illness under control, and can be seen by your primary care doctor then go down that route.

Depends on who signs your prescription.

Baileyw06 profile image
Baileyw06

I have difficulty getting below 6 and my primary physician says at that point it doesn’t make much difference. It is better than going into a flare all the time and going to higher dosage . I have never gone to a Rheumotolgist and my Pcp listens! I am in the States. I also show her the information I get from this site.

jinasc profile image
jinasc

Citation: Comparable rates of glucocorticoid-associated adverse events in patients with polymyalgia rheumatica and comorbidities in the general population. Arthritis Care and Research, July 13, 2017,

ncbi.nlm.nih.gov/pubmed/287....

Eric L. Matteson, M.D., MPH

Emeritus Chair, Division of Rheumatology

Consultant, Divisions of

Rheumatology and Epidemiology

Department of Internal Medicine and

Department of Health Sciences Research

John Finn Professor of Medicine

Mayo Clinic College of Medicine

200 1st Street SW

Rochester MN 55905

If you want to have the article written by Dr Matteson for patients so we could really understand it. We published it in a newsletter, no longer in operation.

A PM with your email address and it will be sent to you.

Suggest you print it off and take it to that medic.

Blearyeyed profile image
Blearyeyed

Horrible appointment , but don't despair.

You know the other Rheumatologist was getting it right and really want to see them.

The Rheumatologists are probably being rotated but you can contact the department by phone with the name of the previous Rheumy and ask that you can rearrange your appointment time when that Doctors there , tell them you would prefer to see them.

If they are not coming back to your Practice , and you check their name , ask the Clinic which hospital they work out of .

It may not be your most local hospital , but if it isn't too far for you to travel , sometimes it's better to travel a bit further to get the treatment you deserve.

You could contact the Clinic they were work in and tell them you were seen by the Rheumy before at your local hospital and are enquiring to be added to their list.

In the meantime work with your GP and follow the advice you know was working for you.

Take care x

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