hi. I just went to the rheumatologist for the first time. I have been happy with my Doc.. and this site. but he said after 7 years and stuck at 2mg. he wanted me to go to a rheumatologist who said she thought I might have RA but I said I just had tests for it ..negative markers (look in my chart maybe? ) and then she kept looking at my hands and talking about the osteoarthritis. And then she told me PMR only lasts a year or two at most. And my body is just used to the prednisone and now I should drop from 2mg. to 1.5 for a month and see how it goes. I said I wouldnt' until my Swedish family visiting for a month left.. then she wrote something to my doc, I have yet to hear from her about giving me Suflasalizine. ????? Anyone take that??? I have no idea what is going on with adrenals. She made no suggestion about them or synachtin test. (spelling wrong sorry) thanks. UGH. THINK I might actually do a healthy anti-inflammatory diet before more meds. (there's a concept. haha. ) and I'll keep jumping in the ice baths!
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yogabonnie
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Suflasalizine is a DMARD like Methotrexate. Why have some doctors got it into their heads that PMR only lasts a couple of years and if your symptoms last longer than that it is not PMR? It is so frustrating. Have a good hols.
Get this, I downloaded all of my records, including referrals and notes from my terrible PCP. She said this'"Rheumatologist Referral for Polymyalgia rheumatica
Patient with clinical diagnosis of polymyalagia rheumatica starting in late February 2023 and self start of prednisone prior to evaluation. Continues to report return of severe symptoms withtitration of prednisone well beyond 6 weeks of symptoms making diagnosis quite uncertain."
So she thinks PMR should resolve in 6 weeks, LOLOL.
Then she changed the diagnosis from PMR to Myalgia/Myositis, multiple. I have never even SAID the word "muscle" to her! The term Polymyalgia is a serious misnomer, and we need a new word. It is not a muscle problem!
Polymyalgia is derived from the Greek ‘pain in many muscles’, which is exactly what it is. ‘Poly’=many, ‘My’=muscle, ‘Algia’=pain. I think the rheumatologist is saying that the prednisone is not working. Although I may be wrong. Pred. normally has a magical effect with PMR provided the dose is adequate.
I complained about my shoulder joints and hip joints, I didn't have generalized muscle pain at all. She won't use the term polymyalgia rheumatica now, she sidesteps it by using multiple myalgia /myositis which is ridiculous. This is all proximal joints, age 70, Wales, Norway, Britain, ethnicity. It happened suddenly, and was gone with 20mg prednisone within hours. I was completely disabled, could not stand up from a chair, put on my shirt, get a drinking class out of the cupboard, or get out of the tub. I remember not being able to get my hand out of my pocket.
At first I was convinced I was going to need double hip replacements, after never having a twinge in my life. I had to get xrays from a different provider and they look good, so it isnt arthritis.
I think I angered her when she told me after a week on 10mg then a month on 20, she told me this was a high, dangerous dose and I should drop to 15. I responded that I couldn't drop that much at once, I had learned my lesson by missing 5mg. I also couldnt get through the night on 20 unless I split the dose. So I have been doing the dead slow taper.
You can tell I'm angry, leaving her soon and using Direct Primary Care for $100/month.
My Rheumatologist did the same thing when PMR lasted more than two years. He changed my diagnosis to inflammatory polyarthropathy. I keep telling him that it is not my actual joints…it is the muscles and tendons. To me there is no question that it is still PMR. When I question him, he says maybe it’s fibromyalgia but that wouldn’t explain your high inflammatory markers. It’s a never ending battle but at least I got him to allow me to manage my steroid dose which is at 1.5mg. I hope you have better luck!
On the contrary. PMR is bilateral pain and stiffness in certain muscles without the muscles themselves being inflamed. Myositis is inflamed muscles. Arthritis is inflamed or damaged joints. Confusion can arise because the shoulder, hip and knee joints are surrounded by large muscles which stabilise them. PMR was defined as a new disease because non of the existing diseases fitted the evidence.
PMR is an autoimmune disease. That's why it responds strongly and rapidly to prednisone at the relatively low dose of 15 to 20 mg/dy.
What did your doctor mean by "self start of prednisone prior to evaluation"? There are many diseases (including a few neurological ones) that can be easily confused with PMR. It is important to rule these out before trying steroids.
My husband is an experienced internist, 40 years in practice. We ALWAYS have steroids on hand, especially traveling. I started Feb 24 on a tiny dose every other day because I had a major trip, alone, 8 days for other medical research. I didn't have a doctor and couldn't get an appointment 'til mid April. On my trip we had a very low pressure N'oreaster and I had all four wheels come off, a beached whale, unable to even roll over in bed. After realizing it was probably PMR, I took enough to get through the week and 20 for the trip home. Hubby and daughter are both physicians, Internists and Infectious disease. I consulted them and they agreed what to do. My father had PMR so we all knew the symptoms.
You might like to mention to your medical people that you know someone (me) who started taking pred in June 2015 and, after inital taper of about two years, had to take a dose of around 2 mg for several years before finally being able to taper to zero at the beginning of February 2024. Nearly nine years on pred. No other medications, no so-called steroid sparers.
Go to Mayo Clinic and look up the studies on PMR and make copies of them for the rheumatologist. Dr. Eric Matteson from Mayo has some great videos. youtu.be/uJl42Zq_pxg?si=g_W...
Thank you for flagging up this You Tube even though it was cut before the end. By fishing around that youtube, I came on an interview with Prof Dasgupta, which was very interesting but also worrying. He was being interviewed by another medic and dwelt on things in more depth.
He stated that if one had more than one flare/relapse, you should be referred to a specialist like himself because there might be some other condition going on like lymphomas or a number of other things.
This is a link to what I watched in case it is of use. Is he as good as Prof Rod Hughes at Chertsey in Surrey I wonder? It seems as if he is very famous.
I think his view is that PMR can be incorrectly diagnosed by GPs, so patients should been seen at least once by a Rheumy. But that was difficult enough before Covid in some areas, and even more so since.
Obviously if your PMR is not being well controlled that that may increase the cases of an incorrect diagnosis [but correct tapering also is a big factor whether under a Rheumy or GP]. However there are plenty of patients who are managed very well by their GPs.
As for who is better, not sure that should be answered on open forum , but one certainly seems more approachable than the other.
Thank you Dorset Lady for your quick response. Certainly helped me to calm down and understand that Dr Dasgupta was talking about getting a correct diagnosis. I follow the slow tapering advice and keep hopeful that the PMR will burn itself out in its own time. My new GP is very supportive so I am thankful on that front and try and get on with life. Sometimes too much information can be disturbing!
Yes it can -and as I said many manage very well with their GPs -especially the good ones…who are more willing to listen to the patient rather than dictate 😊
I gave a rheumatologist the big heave ho after he ‘diagnosed’ widespread osteoarthritis by looking at the back of my hands and told me to stop taking Pred because my PMR had ‘gone’! I know the feeling of being mis-diagnosed and feel for you. It sounds as though a return to your trusted doctor is in order.
I found this USA article that may include a couple of relatable points:
The fact that it’s written by a law firm wanting your money can be ignored but it is a reminder that it’s your body and your health and you have a right to a correct diagnosis. You are an intelligent woman: formidable comes to mind. 🙂
If I were you I would look for alternate Rheumatologist. Much easier then arguing with one that has strong (incorrect) opinions. I had PMR for 7 years in a first year I got down to 3-4 level and spend the rest of the time pretty much at the low dose and slowly tapered to 0. It is PMR , not dose of pred that determine how much medication you need.
I’ve let two rheumatologists go and only have a great Physician Assistant. The first one said I had RA so I went to Mayo who agreed with me that I have PMR. The second one never asked me questions but only read the information I had to input in a tablet. He wanted to put me on methotrexate every time we met. I only saw the top of his head.
Keep looking for someone who will listen to you. You deserve it.
Good! I’m sure you’ll have remembered the oft’ repeated advice to write down your questions, concerns etc before you head off. All the best, Yogabonnie.
I replied to you.. not sure where it went... Thank you for this. that was my other worry. longevity! Was she on prednisone when she died. My mom was nearly 98 when she died..weren't we lucky to have them so long!
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Rheumatology visit, Monday.....BIG taper 😨😱
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