Newly diagnosed PMR, still in shock - fighting it, sharing, learning

@tuckerp thanks for sharing that .. I know everyone says don’t rush this and I understand why. But like you i would rather have a faster taper and maybe put up with some discomfort because even though the PMR pain I had was excruciating in the morning I was still functioning by the afternoon and even cycling and swimming (or floating!) the science seems like a very blunt instrument to me. It’s like ‘right you have PMR do you’re on steroids for 12 to 18 months’…. I would like to try and watch whether I can come down a bit quicker but all the advice seems to be not to do that . I’m 58 and been in really good health and active with strong endurance although anxiety and stress does affect me. I’m going to talk to my rheumatologist tomorrow as he wants me in 10mg for another 5 weeks and then will probably do the 1mg every 4 weeks traditional taper. It seems the longer you are on this horrible Prednisone the more damage is done to your body maybe even above and beyond what PMR would do … I don’t know … I’m confused !

@martyn My understanding of corticosteroids from my research was that it takes about 2 weeks for your body to stop producing cortisol. So I moved quickly in the first two weeks to find my lowest possible dose. That appeared to be 10mg. I kept dropping to 5mg and could not do so without the uncomfortable pain. It might have been some cortisol withdrawal as well since this was after 2 weeks. But at about 5months I dropped and it was manageable. I stayed at 5mg for about 2 weeks and then dropped to 2.5mg for 2 weeks and went to zero. I should mention that I was on Dexamethasone. This is 5 times stronger than prednisone. So when I say prednisone its prednisone equivalent. My Dr had prescribed 2mg tablets. They had a score line to split. He had done this at my request. These are about the size of a baby aspirin. my 10mg of prednisone was 1 tablet of 2mg dex. I split in half to go to 5mg. Then split in quarters to go to 2.5mg. This quarter tablet was not always even but was like nothing. I could wet my finger and stick in my mouth. My taper would have been difficult splitting any further without getting a prescription to match. Dex has other sizes.

I agree that this turns your life upside down very quickly. I’m 62 and have been active and healthy other than another autoimmune disorder that has been very well controlled for decades.

I had pain and stiffness for about 3 weeks before I could get into my primary doc. Bloodwork was consistent with PMR, and I responded to 20 mg of prednisone within 4 hours.

I just got a message that the rheumatologist my doctor referred me to declined my referral because they don’t treat “my condition”.

Is this a common thing? I haven’t heard of this before. Maybe my blood markers weren’t high enough to be considered that serious? I haven’t seen another autoimmune disorder, and really wanted a rheumatologist who would guide my taper so that my other disorder doesn’t flare up.

At this point, I’m waiting to hear if my primary doctor is going to try another rheumatology practice. So confusing and disappointing.

Well I know my story is probably different from things but whenever I see prednisone I know it's a steroid I know that's really horrible and I'm fighting like the devil not to be on it all the time my issue with it is it does wear out very fast and I don't want to up my doses I don't want to become immune to it so my doctor specifically for myself of course has me on like a two week regimen of the 20 mg and it's a total of 44 tablets (6 tabs for two days, 5 tabs for two days, 4tabs for two days and so on... It's striking while the iron is "hot" approach. Takes two weeks to take that big shocking dose to knock this discomfort down and take that for 2 weeks and you know wean yourself off as you go every two days you change your dosage down to until you have none but on top of that they also gave me Flexeril and that's usually for spasms but for some reason with the Flexeril with the prednisone the Doctor who had recommended it and and it strangely enough works!!

I don't question it but it allows me to get like three or four months of not having to take a steroid everyday that's going to compromise my health liver is most important organ steroids can affect a
Etc... prednisone is really bad and hard on the body as a long term type resolution but I was hopeful I makes sense Flexeril daily once to twice a day I don't take the prednisone for 3-4 months so I feel I am able to filter the harm the steroid causes out of my body before I need it again.

I know it's my own solution that seems to work, until recently until a month and a half ago where I switched doctors and my new doctor doesn't want me to take prednisone cuz she's trying to be a control freak him she doesn't understand that that's something that works if something works don't you just do it until you establish yourself more with the patient and familiarize yourself with them but that's my struggle I'm right now is so uncomfortable and I'm having flares and I literally I'm not doing so well so hopefully my next appointment I will get her to see her error or I'll have to switch to another Dr because she is not helping me in any way causing this discomfort I'm single live alone and if I fall which this pain has caused me to fall more times than I care to admit.

I'm sorry too many details but I'm hoping this may be a safer place to openly speak of what works for me personally and of course whatever suits your needs you and your Dr can hopefully see eye to eye and work as a team to help you feel the most comfortable with less permanent effects on the body.

Also a nutritionist/dietitian is great as well certain types of foods and certain foods at certain times of the day can cause a lot of issues too... Maybe if interested try that. It really took about 6-8 months and routine blood work and things I literally will send my nutritionist or my orders that I place for food and I'm very specific about how I eat what I eat she's changed it so it's made it a little bit more comfortable to deal with I say anything that's more comfortable to deal with without having to take a chemical is nice. I do appreciate a more natural approach and that's my own personal journey but as being a human being we have one circulatory system we absorb so much through our pores and everything like that I could go on and on but literally processed foods you know obviously no good. Anyways I'm sorry I'm long winded. But hope throughly spoke so not to confuse anybody.

Don't give up there is something that will help us ...

@nicolesb Made me sad to hear this! Very confusing and disappointing. PMR is something I thought most if not all Rheumatologists worked with. Don't give up finding another one. The right doc can make such a difference with this. If you've read even a few of the posts in this forum, you know how complicated this all is and how varied the results can be. And how sick you can get without someone to properly guide you. Sending prayers your primary will come through for you with the right doc.

@sbgigi
I've been fighting for 3 months for help. There were days I stood in the shower and just cried. The pain is debilitating and doctors can't feel it. I am going up for neck surgery in a couple weeks because of numbness in my right hand and shoulder pain. Surgeon says I have 2 things going on. Yeah, I could have told him that! Coming home from surgery apt and Chatgpt suggests PMR? What? Back to my GP who did battery of tests. Only CPR was abnormal. Since I have surgery in a couple weeks there's no pain relief for me! Though I'm not suicidal at all, I do understand how easy one could be! I never thought I'd experience pain of my complete torso. G-d bless all of you who are suffering.

@geve
So glad you're here in this community, but so sorry about your pain, suffering and lack of relief/help from your Doctor/s.
Have you seen a Rheumatologist yet? That's the type of Dr that can help you the most and understands the disease and all the available treatments for it. No offense to most PCPs or surgeons but they just don't have the experience, education and expertise of a Rheumatologist. At least not the majority of them don't. I'm not a Dr and this isn't
medical advice, but I
suggest you go see a Rheumatologist BEFORE going for neck surgery. Do you feel absolutely
certain that the numbness in right hand and shoulder pain are from your neck. Is your surgeon/Dr saying it's from bulging disc/s pushing on nerves or what? I had horrible pain, swelling, and sensitivity in both my hands, and sometimes numbness too. The pain in both shoulders woke me up every night to the point I'd have to get out of bed and go sit upright the couch to have it not hurt quite as much. But each person's symptoms can be different.
Had a bunch of other symptoms, pain, stiffness, weakness too.
PMR usually shows up bilaterally and shoulders are one of the main areas. Does the pain or any other symptoms wake you up during the night/early am? That's another thing that happened to me and I believe many others. It's a bizarre list of possible symptoms and each person's can be different. I've had neck surgery 2x's. Have 2 levels fused from 2 different surgeries. I would definitely advise being certain it's your neck prior to surgery but I'm not a Dr so I can't give medical advice but only as a neck surgery "survivor" and someone with PMR.
Truly hope you can confirm what's going on prior to surgery.
Blood tests can show different things and CRP is a big one for PMR. So don't think that because other labs were negative that it rules out PMR. They can do a color doppler Ultrasound of your shoulders to look for PMR changes. Blessings.

@boomermeg
I've had lots of tests done. They don't confirm PMR but they don't rule it out. I'm trying to get a round of prednisone to see what is relieved before surgery. Thanks

@geve
Did they do a color doppler Ultrasound of your shoulder? Another thing they check for is GCA (Giant Cell Arterits), which many people who have PMR can have, or develop later. It's a very serious disease, even More so than PMR, in case you aren't aware of it. I wasn't until someone here mentioned it.
Don't know where you live because rural areas might be harder to get a "color doppler ultrasound" or "power doppler ultrasound,"
but if you live in or close enough to a big city you might want to look into it. It's about 80+% accurate in diagnosing the type of bursitis and other disease processes of PMR. One important point is the operator needs to be knowledgeable about this type of ultrasound. It's not same as typical kind. It's used along with all your labs, symptoms and Rheumatologist's diagnosis to help confirm/rule out PMR. The ultrasound tech was a DR and had been trained/certified in it. She also checked my head in different areas where arteries are for GCA. I'm grateful I didn't have that, but it definitely confirmed my PMR diagnosis. Blood tests alone don't confirm, but aid in diagnosis with all the above. Hope even some part of all this info helps you or anyone else. I'm new myself but we all learn from eachother.
I hope you get relief from all the pain. Blessings.

@geve
I started shoulder and neck pain last October with some numbness of my right hand. My primary sent me for x-rays and then to a pain management specialist thinking I had a pinched nerve. After an MRI they sent me to a neurosurgeon because I have multiple neck issues. Long story short, the neurosurgeon who suggested surgery had me meet with the founder of the practice, and he realized that my symptoms which now imcluded my lower back and hip girdle did not match my MRI. He suggested an autoimmune disorder and ordered blood work which showed inflammation. He immediately sent me to a rheumatologist and he determined that I had PMR. I am forever grateful to the neurosurgeon who saved me from an unnecessary and very complicated surgery.