1. < Polymyalgia Rheumatica (PMR)

New member with PMR

Posted by rocksology @rocksology, 2 days ago

Hi, I’m Terri! I was diagnosed with PMR January 21, 2025, but I have lived with chronic pain for the last 20 years. I’m also an alcoholic with 19 years of recovery.
The (only) Rheumatologist in Central Oregon is no longer accepting patients and is taking a sabbatical, and my PCP had to look up PMR to understand how to treat it. She didn’t diagnose me, I did. I had to BEG her to run SED rate and CRP, then gave her a NIH study to read. (SED 44, CRP 12)
I have had severe symptoms for a few years, but I’m treated as though I’m drug seeking because of my history. I finally gave up when that Rheumatologist told me I have Fibromyalgia and he couldn’t help me.
At Christmas, it came to a head when I was suddenly unable to get up out of bed, shower, get dressed or drive. Urgent care told me it’s just my Chronic pain issues and to contact the pain clinic. (I REFUSE to take Suboxone - I’m a drug and alcohol counselor)
I’m just winging it with the prednisone as my PCP wasn’t sure what the taper was or how fast. She wants me off of it ASAP. (But it’s working!!!)
I just need encouragement and to know I’m not alone in this battle. I have so many questions and no one to ask! I started 20mg on 1/22, and am currently down to 17.5mg. My PCP has my next appointment in FOUR MONTHS. That seems a bit out there, but what do I know. She wants me down to 10 mg by then and taper 1 mg/ month after that.
There’s my story, sorry it’s long, but I haven’t been able to tell anyone about my journey, and I’m scared.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

reets70 | @reets70 | 1 day ago

When I was diagnosed in March of 2023, I had never heard of PMR, but after one day on Methylprednisolone, I was a believer! My rheumatologist diagnosed me and provided the prescription, but I then saw my PCP for her assessment. Both doctors agreed with diagnosis. I tapered down for six months, but PMR left me with spine issues, pain that never goes away. I had a second flare in 2024 that continually causes extreme pain in my legs (hamstrings) and I find walking any distances too painful. I’m off prednisone due to some side effects that could cause further issues, and I’m living with these difficulties as best I can.

REPLY
rocksology | @rocksology | 14 hours ago
In reply to @johnbishop "Welcome Terri @rocksology, You are not alone and from reading your story I'm thinking you may..." + (show)
@johnbishop

Welcome Terri @rocksology, You are not alone and from reading your story I'm thinking you may have a leg up on where most of us have started with this PMR game because you are your own advocate which is a big plus.

There are a lot of great discussions started by other members here in the PMR group that will help you get a jump start in learning more and hopefully provide some encouragement. Here are a few of them that I have found helpful:

-- Comprehensive Overview Of PMR:
https://connect.mayoclinic.org/discussion/comprehensive-overview-of-pmr/
-- How to Slowly and Safely Taper Off Prednisone but ... no set rules.
https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/
-- History of PMR:
https://connect.mayoclinic.org/discussion/history-of-pmr-interesting-video-presentation-from-past-to-present/
One thing that helped me was keeping a daily log of my level of pain in the mornings and my dose of prednisone. Do you keep a log?

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I haven’t! But I will definitely start one.

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rocksology | @rocksology | 14 hours ago
In reply to @susanalka "Hi Terri, I was diagnosed in Dec 2024 and started out at 10mg prednisone. I am..." + (show)
@susanalka

Hi Terri, I was diagnosed in Dec 2024 and started out at 10mg prednisone. I am tapering 1 mg every four weeks. I have some pain but so far not unbearable. I’m almost ready to reduce another 1 mg and just keeping my fingers crossed. Trying to stick with anti inflammatory diet and daily walks. By the way, my PCP is months out for appointments so I was seen by her assistant who diagnosed me and wrote the prescription. My PCP was given the info and sent me a brief email with no further info. Seems this is the state of healthcare these days. Good luck..I’m in Portland!

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I have been looking for a Rheumatologist to see, I’m looking in Portland and the Salem area since there are none in Central Oregon. Thought (hope) I could do Telehealth and connect my PCP for treatment.

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rocksology | @rocksology | 14 hours ago
In reply to @russ1949 "Hi Terri. I’m in Central Oregon and have been diagnosed with PMR since 8/24, currently on..." + (show)
@russ1949

Hi Terri. I’m in Central Oregon and have been diagnosed with PMR since 8/24, currently on only Prednisone, tapering incrementally 20mg to 9.5. I am very happy with my rheumatologist, Dr. Kahr, who is in Bend, OR. Good luck

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Kahr denied my referrals (2 of them from 2 different docs). He “diagnosed” me 8 years ago with Fibromyalgia without running any tests. Then I was referred back 3 years ago and he got upset with me because he “already diagnosed you 5 years ago with FM”. I don’t know if he refused the referral because he has made up his mind it’s FM, or because he’s way over loaded. He was not kind to me 3 years ago. Now we KNOW that the pain wasn’t FM, but PMR, I’m at a loss for help. The pred is giving me other problems now as I ended up in the ER last night. I’ll start a different discussion about that!

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rocksology | @rocksology | 14 hours ago
In reply to @kathyv66 "Hi Terri, I have been off prednisone for about 6 months but it took over two..." + (show)
@kathyv66

Hi Terri, I have been off prednisone for about 6 months but it took over two years to get there. I starts at 20mg for two weeks, then 15 for two weeks, then 10mg. Then I did the 1mg reduction every 4 weeks until I got stuck around 4-5 mg (which seems to be a common spot to get stuck). I would usually have a little discomfort for a few days when I did my reductions but if it lasted two weeks, I increased and stayed at that level until I was pain free +2-4 weeks before trying again. Eventually I got there! At the very end I was on 1 mg for months and then forgot to take my pill one day and it was ok!

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I went from 20 for 4 weeks, 17.5 for 4 weeks, 15 for 2 days and the pain came back. I’ve been back on 17.5 for 2 weeks, and tomorrow I am quartering my 5mg and taper to 16.25 mg. Sure would be easier if my doc would give me different milligrams of prednisone so I could taper on .5 mg. +|- as my needs adjust. She has me on a strict regime, assuming I will be able to just go down by 2.5 every 2 weeks. She doesn’t like that I am following a pain designated dosing. She doesn’t NOT understand the degree of pain! I believe doctors ignore pain patients because there is nothing they can do to help without rushing their license.

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1 reply
rocksology | @rocksology | 13 hours ago
In reply to @joan7 "What city are you located in Oregon? I will try to help you find someone the..." + (show)
@joan7

What city are you located in Oregon? I will try to help you find someone the best I can. Also, Mayo Clinic has support groups online for PMR. Maybe you can ask about a Rheumatologist in the area where you live. I'm on the east coast, but you need to have a Rheumatologist not a Primary Care Doctor. I would definitely go for a second opinion on a new Rheumatologist. Ok, this is how it goes. To get better, this is not a race, it's a journey. You may find that once you start come down off the Prednisone, you will start experiencing bouts of pain. Do not get discouraged. Although they do not recommend to take Advil (my doctor said it was okay as long as I didn't overdue it), so I took 1 Advil Gel for 1 or 2 days and I felt a hundred percent better in an hour. Then I was able to taper down without too much pain. To be blunt the PCP was incorrect in telling you to come off the Prednisone fast. When you get down between 15 to 10 mg you may start to feeling your PMR symptoms coming back. When that happens, I would start going down only by 1 or 2 mg with each taper. This was my taper: 20 mg to 17.5 to 15 to 12.5 to 10 (at this point you may start experiencing pain; ask you doctor about taking 1 Advil Gel) to 7.5 to 5 to 4 to 3 to 2 to 1 mg. You can also come down by taking the old dose and the new dose every other day, for example: Your taking 5 mg and going down to 4 mg. You can take 5 mg one day and the next take 4 mg, and the next day take 5 mg and the next day take 4 mg, etc. etc. Then do this with each lower dose. This will help you come down off it slowly, and hopefully you will be Prednisone free. I hope this helps!

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I’m in Redmond Oregon. I’ve exhausted all the Rheum searches in this area. There are only two primary medical here and one hospital group. It’s small! I’m now looking into Salem or Portland, but again, very, very long new patient waits.

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rocksology | @rocksology | 13 hours ago
In reply to @jeff97 "Hello Terri and welcome. I was diagnosed with GCA and PMR in late June 2024, so..." + (show)
@jeff97

Hello Terri and welcome. I was diagnosed with GCA and PMR in late June 2024, so I'm familiar with both of those conditions. I started at 60 mg per day of prednisone, and I've tapered down to 6. I also taking Actemra injections weekly.

Has the prednisone taken care of your pain and stiffness? 4 months seems like a reasonable amount of time to get down to 10 mg. I would think you could taper in steps of 2.5 mg per month, and once you get down to 10, stay there until your appointment. Just see how you feel and if the pain comes back, go back to the previous dose and then start tapering at a smaller decrease.

Assuming you don't already have bone density issues, a standard piece of advice for anyone taking prednisone for an extended period of time is to take calcium and vitamin D supplements. I take a pill that combines both along with vitamins K2 and B12.

Also, take the prednisone as early in the day as possible along with food. I have to take a PPI, pantoprazole, to control digestive tract irritation. If you have problems you might need one too. Some people end up splitting their dose to get through the whole day better, but you can see how you do first with a single dose in the morning.

Are you having any problems with insomnia? I had a lot of trouble, but it went away once I got down below 40 mg per day. Hopefully you won't have that problem, but lots of people do.

Feel free to ask questions! I know I felt very much at sea when I was first diagnosed.

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HORRIBLE insomnia and anxiety! There is at least one night a week that I don’t sleep at all. I take 100mg Trazodone and it doesn’t touch the insomnia. I also take 40 mg PPI (Pepsid) morning and evening for GERD, but it is MUCH worse on the prednisone. I down Alka Seltzer heartburn chews during the day too. These meds I have been on for years before my diagnosis. I requested a very mild anti anxiety medication from my doctor and she denied it. I’ve been through over a decade of mindfulness training around my pain because doctors poopah chronic pain. I finally find what stops the pain and they won’t allow any anti anxiety meds? I’m so frustrated.

REPLY
kathyv66 | @kathyv66 | 13 hours ago
In reply to @rocksology "I went from 20 for 4 weeks, 17.5 for 4 weeks, 15 for 2 days and..." + (show)
@rocksology

I went from 20 for 4 weeks, 17.5 for 4 weeks, 15 for 2 days and the pain came back. I’ve been back on 17.5 for 2 weeks, and tomorrow I am quartering my 5mg and taper to 16.25 mg. Sure would be easier if my doc would give me different milligrams of prednisone so I could taper on .5 mg. +|- as my needs adjust. She has me on a strict regime, assuming I will be able to just go down by 2.5 every 2 weeks. She doesn’t like that I am following a pain designated dosing. She doesn’t NOT understand the degree of pain! I believe doctors ignore pain patients because there is nothing they can do to help without rushing their license.

Jump to this post

I've learned on here that everyone's journey is a little different and you have to push back on your doc and stay out of pain. I was lucky, I didn't encounter problems until I was on a lower level and while my doc encouraged me to get off prednisone, he also understood the need to function.

REPLY
joan7 | @joan7 | 8 hours ago

Hi, I found the following Rheumatologists for you. They are listed by distance from your area. This is the website I found these Rheumatologists on: https://www.medifind.com/specialty/rheumatology/US/OR/Redmond :

Dr. Andrew B. Shaffer
Rheumatology
St Charles Health System Inc
211 Nw Larch Ave, Family Care,
Redmond, OR
(1.2 mi)
541-548-2164
Experience:
8+ years
Languages Spoken:
English

Dr. Christina M. Bright
Rheumatology
Bend Memorial Clinic PC
1501 Ne Medical Ctr Dr,
Bend, OR
(15.1 mi)
541-382-2811
Languages Spoken:
English

Dr. Anthony M. Kahr
Rheumatology
Bend Memorial Clinic PC
1501 Ne Medical Ctr Dr,
Bend, OR
(15.1 mi)
541-382-2811
Languages Spoken:
English

Dr. Amy T. Madison
Rheumatology
Bend Memorial Clinic PC
1501 Ne Medical Ctr Dr,
Bend, OR
(15.1 mi)
541-382-2811
Experience:
16+ years
Languages Spoken:
English

Expertise in
5
conditions
Dr. Daniel E. Fohrman
Rheumatology
2200 Ne Neff Rd, Ste 302,
Bend, OR
(15.2 mi)
541-388-2232
Languages Spoken:
English

Dr. Zachary Kerosky
Rheumatology
200 Mullins Dr,
Lebanon, OR
(87.8 mi)
440-645-4755
Languages Spoken:
English

Dr. Cody K. Wasner
Rheumatology
Oregon Healthcare Resources LLC
1007 Harlow Rd,
Springfield, OR
(93.7 mi)
541-284-1600
Languages Spoken:
English

Dr. Justin J. Bucci
Rheumatology
Oregon Healthcare Resources LLC
1007 Harlow Rd,
Springfield, OR
(93.7 mi)
541-284-1600
Languages Spoken:
English

Expertise in
3
conditions
Dr. William A. Hinz
Rheumatology
Oregon Healthcare Resources LLC
330 S Garden Way, Suite 350,
Eugene, OR
(94.3 mi)
541-746-6816
Languages Spoken:
English

Dr. Norman P. Hudson
Rheumatology
2479 Oakmont Way,
Eugene, OR
(95.2 mi)
541-484-0195

Dr. Diman R. Lamichhane
Rheumatology
William P Maier MD PC
633 E 11th Ave,
Eugene, OR
(95.9 mi)
541-434-5585
Experience:
21+ years
Languages Spoken:
English, Hindi, Nepalese, Nepali, Spanish

Dr. William P. Maier
Rheumatology
William P Maier MD PC
633 E 11th Ave,
Eugene, OR
(95.9 mi)
541-434-5585

Dr. Hesham A. Elmergawy
Rheumatology | Hospital Medicine
William P Maier MD PC
633 E 11th Ave,
Eugene, OR
(95.9 mi)
541-434-5585
Languages Spoken:
English

Dr. Dane H. Dougherty
Rheumatology
Oregon Healthcare Resources LLC
600 Country Club Rd, Suite 100,
Eugene, OR
(96.2 mi)
541-463-2390
Experience:
14+ years
Languages Spoken:
English

Dr. Sidney I. Cassell
Rheumatology
132 E Broadway, Suite 830,
Eugene, OR
(96.3 mi)
541-687-0816
Languages Spoken:
English, German

Dr. Sarah E. Cassell
Rheumatology
Drs Cassell And Boren PC
132 E Broadway, Suite 830,
Eugene, OR
(96.3 mi)
541-687-0816
Languages Spoken:
English

Expertise in
24
conditions
Dr. Daniel S. Sager
Rheumatology
Providence Health And Services Oregon
1108 June St,
Hood River, OR
(100.3 mi)
541-387-6125
Languages Spoken:
English

Dr. Simona S. Braun
Rheumatology
Providence Health And Services Oregon
1108 June St,
Hood River, OR
(100.3 mi)
541-387-6125
Languages Spoken:
English, Czech

Dr. Raymond C. Hausch
Rheumatology | Pediatrics
Oregon Oncology Specialists Llp
3025 Ryan Dr Se,
Salem, OR
(100.4 mi)
503-485-0350
Languages Spoken:
English

Dr. Brian L. Greenberg
Rheumatology
Kaiser Foundation Health Plan Of The Northwest
2400 Lancaster Dr Ne,
Salem, OR
(100.8 mi)
800-813-2000
Experience:
21+ years
Languages Spoken:
English

Dr. Stephen R. Stewart
Rheumatology | Allergy and Immunology
1600 State St,
Salem, OR
(101.8 mi)
503-540-6400
Languages Spoken:
English

Dr. Rosario P. Bonafede
Rheumatology
Providence Health And Services Oregon
1510 Division St, Suite 170,
Oregon City, OR
(102.1 mi)
503-215-6819
Languages Spoken:
English

Dr. Daniel E. Mendez-Allwood
Rheumatology
Oregon Oncology Specialists Llp
875 Oak St Se, Suite 4030,
Salem, OR
(102.2 mi)
503-561-6444
Languages Spoken:
English, Spanish

Dr. Amitha Gona
Rheumatology
Oregon Oncology Specialists Llp
875 Oak St Se, Suite 4030,
Salem, OR
(102.2 mi)
503-561-6444
Experience:
14+ years
Languages Spoken:
English, Hindi, Telugu

Expertise in
17
conditions
Dr. Jonathan D. Jones
Rheumatology
Good Samaritan Hospital Corvallis
3620 Nw Samaritan Dr, Suite 203a,
Corvallis, OR
(104.9 mi)
541-768-4810
Languages Spoken:
English

(THERE ARE MORE DOCTORS ON THIS WEBSITE DEPENDING HOW FAR OUT YOU ARE WILLING TO TRAVEL)
-----------------------------
What I did when I was looking for a Rheumatologist in my area, I put in my location and went down the list of doctors that were in 120 miles of my home. I did search on each of my doctors by typing "review for __________ (the doctor's name)", and see what you come up with. I usually start off with looking for doctors with a 5 out of 5 rating, and the one with the most # of reviews. I never would look at a doctor that was less than 4.6, but that is me.

If I may make a suggestion. It may take your seeing a few Rheumatologists to find one that you are comfortable with that can treat your PMR successfully. Even if the doctor has a 3 month wait, I would still book an appointment if they have really good rating. When I was searching for someone to diagnosis me with my PMR I found most Rheumatologists were booked 3 to 6 months out. So I started booking them 3 to 4 months away. Then I looked for a hospital that specialized in Rheumatology cases that was huge. There was the Mayo Clinic and on the East coast was University of Pennsylvania. Mayo Clinic was not accepting any new patients from outside the state and UPenn had a 4 month wait. I was seeing doctors every several weeks until I narrowed it down with whom I was not only comfortable with, but who had a practice where all the doctors and staff would collaborate on a patient's case (6 heads are better than 1). Then I also found out that they worked closely with University of Pennsylvania and that's how I was finally diagnosed, with that Rheumatologist 40 minutes from my home and UPenn 1 hr and 40 minutes away. There is nothing wrong with booking several of the same type of doctors, especially since they look at you differently than the way you want them to. They need to take you seriously. My doctors probably thought I was neurotic, but I didn't care what they thought. All I wanted was a diagnosis and treatment plan for the severe pain I had. And someone that would do something about my condition....I was bedridden for a full year prior to my diagnosis. Nothing worse than being passed along like a hot potato or a doctor that's willing to treat you AFTER you get a diagnosis. I went through the ringer. Just don't give up.

Let me know if this helps. If you need more names, let me know. These Rheumatologists should be within 2 hours of your home. Good luck. Let me know how you make out.

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