August 2019, I suddenly with diffuse body pain (the most excruciating located at the base of my thumbs). I was transported to the ER. 3 times in 6 days, was treated with strong steroids (had a horrid reaction to 7 days of Dexamethazone), and simply continued with Diclofenac until February 2020.
Was functioning well until September 3, 2020 when both shoulders and hips - “classic PMR symptoms” suddenly became painful with movement. After a Medrol Dose Pak from my Primary Care Doctor did nothing to help, my Rheumatologist opined that my 4.5 CRP level confirmed her initial PMR diagnosis from 2019. I began 10 mg. Prednisone/day in November 2020 and my CRP reduced to 0.7 in December 2020.
Folks, I have essentially been bedridden for six months, taking Prednisone for four months but have had no improvement from the PMR pain. The major side effects from this drug: flu-like body aches every morning; a weakened immune system (resulting in severe weekly outbreaks of a previously controlled virus (HSV1) with cold sores alternating between the inner nose, mouth & sinus cavities every few days); insomnia; fatigue; non-impact bruises, and rapid weight gain feel out of control.
Besides trying to walk 1/2 mile/day and bi-weekly Physical Therapy (31 times) since December, there is still NO improvement. My symptoms are worsening in the upper arm, shoulder, low back and hip. Yesterday, a inner knee pain has begun aching and swelling... non-stop.
While I requested halting the Prednisone after two months, the Rheumatologist would only reduce this drug by 1 mg./month. Thus, I am now down to 6 mg./month but have 6 more to go!?
I am a strong-willed, older woman who was permanently disabled from back and neck injuries over 15 years ago. I voluntarily terminated over 20 years of narcotic analgesics, benzo’s, and anti-depressant pain medications over 5 years ago all by myself - alone - with no medical or other support.
I can handle pain and all kinds of discomfort but after reading how so many folks cannot reduce below 4 mg. I am becoming quite frightened that I the Pred destroys our adrenal glands’ ability to function...
I was going to get a second opinion in a town several hour’s drive away, but after tons of research, I realize there are few treatment alternatives or ways to quickly stop these steroids.
My PCP is the only doc who has helped me with supplemental vitamins, pain and sleep medications.
Any supportive ideas are welcome, as I wish to terminate the Prednisone as soon as possible...even if I have to continue to remain bedridden until my adrenals begin functioning again. Can you understand that I want “off” this stuff because it has never helped my pain?
(P.S. - I missed ONE dose ONE day and was slayed. Only then, did the Rheumy inform me to never skip a dose!).
Someone suggested “if the Prednisone does not help”, you probably don’t have PMR. My symptoms are “textbook” and although I had Fibromyalgia 22 years ago and overcame it, research reveals no other condition which is even similar to my symptoms.
Has anyone else encountered “no relief” from Prednisone? I have difficulty asking for help but I have no where else to turn, as friends and family fail to understand the reasons I remain so debilitated.
(Photo with puppy on September 1, 2020 - 2 days before PMR “hit”) - Just turned 67 years of age.
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CO_mtnLady
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“Someone suggested “if the Prednisone does not help”, you probably don’t have PMR. “
That maybe true, but you NEED to be on the correct dose of Pred to control things. 10mg is a very low starting dose - anywhere between 12.5-25mg is usual recommendation with 15mg being the most popular.
The physical therapy is probably making your PMR (if that’s what it is) worse - unless the therapist is well versed in treating PMR patients- your muscles are less resilient than normal.
And no, you cannot just stop Pred, that could lead to an Adrenal crisis. It doesn’t destroy the adrenal glands ability to work, but at any dose over about 7mg and if you’re on for more than 3 weeks it takes over the work of the glands, and you need to reduce slowly to nudge your glands to start functioning again.
Unfortunately there isn’t much other than steroids to treat PMR, but as you’re in the States you may be offered Tocilizumab or similar - which can be used in conjunction with steroids initially.
Thank you, DorsetLady, for your informative and caring response.
Frankly, my mind has been swirling since receiving your message. My mind was “set” on only having to take this drug for 6 more months... Then, seeing the struggles of so many folks who can’t get below 4 mg. is terribly frightening.
While I have little doubt I should have been given the correct dose of Pred to begin with, the multitude of side effects I have encountered from just the 10 mg. are what makes me reticent (scared to death) to consider INCREASING my daily dose of this awful stuff.
I am seeking care with another Rheumatologist on April 1st, as I now understand that my case has been mismanaged.
I really appreciate your wisdom and assistance in suggesting other medications which might help, along with a link to pertinent literature on the subject.
Many blessings to you for recovery from your illness, too.
I do understand your concerns - been there, done it, blah, blah, blah.......and yes some people do struggle, but that’s why they are on this forum. If they sailed through PMR, they wouldn’t need advice from us.
Unfortunately there seem to be large areas in the US where PMR just isn’t understood, whereas others places seem to have very good Rheumies and knowledge. Don’t misunderstand me, I’m not saying the UK is brilliant everywhere it’s not, but at least patients here can access those centres of excellence far easier....well in normal times!
I think the first thing you have to accept is that you are going to be on steroids for at least a couple of years - and although some of the side effects aren’t nice they are all manageable.....just ask us - we’ve been through a good many of them.
When I was finally diagnosed (after 18 months of having
excruciating pain in shoulders, neck and head and losing sight in one eye) and not sure the other eye could be saved, steroids to me where a miracle drug.....my Ophthamologist told me I’d been on them for at least 2 years, probably 4, and maybe for life. He was spot on - 4.5 yrs in total.
I started at 80mg to preserve sight in remaining eye, and although I did get many side effects at the beginning, I knew I didn’t have a choice of whether to take them or not...
...I’m not telling you that for sympathy, but just to say if I can get through it, so can anyone.
Me - I’m fine now, my GCA has been in remission for almost 4 and half years....and I feel better than I have for years....mind you a replacement knee, hip and shoulder accounts for most of that.
Hope you new Rheumy sets you on the right path, and please try and stop worrying - and let us know how things go.
Only one thing to say - you need more than 10mg/day to manage PMR that has been left to build up as yours has been. Once you are on the right starting dose the rest follows.
The symptoms you describe are almost all due to inadequately managed PMR - I had them too for 5 years because I wasn't diagnosed. That is also why people get stuck on low doses of pred as the disease activity wanes, they have gone to too low a dose - the starting dose of 15mg minimum is just that, a starting dose, you then taper that dose slowly to find the lowest effective dose. But you can only do that if the initial build up inflammation has been cleared out first and in your case it never has been.
are information about managing PMR - and frankly, your rheumatologist sounds pretty useless if she doesn't know - or hasn't looked up - how it should be managed, The Recommendations are international so the charge "they do things differently in Europe" can't be levelled at them and anyway, the disease is the same, the only management approach is corticosteroids although tocilizumab is used in the USA if funding can be secured.
Instead of wanting off pred - you really want to be off that doctor and find one who knows what they are doing because she hasn't.
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Wee update - still a newbie
Tests for adrenal function
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