It's been a while since I've posted. My hubby is almost at 1 year on Pred for PMR. As soon as he tapers, his shoulder pain comes back. He is recently retired and suffering through this madness, which I think started after taking a booster (please don't debate me - this is factual to me, thanks). Anyway, he is on 5mg now and has the shoulder pain. When I first started posting here a year ago, I saw many posts that stated 18 months is about the norm for this. Now I'm seeing 5-6 years on some posts. Are you kidding me? So basically there is no cure for PMR and you're on Pred forever? Should we say welcome to diabetes, adrenal failure and more? Sorry to sound jaded, but I am discouraged. Although it is not me and it is my husband with PMR, it is happening to me because I can feel his pain and sadness. I had to vent. Thanks for listening. Any encouragement is welcomed. I wish everyone healing and comfort.
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I am not going to debate you. My PMR started 5 days after my first AstraZeneca jab. I am at 23 months. My Rheumatologist swears the PMR has gone. I am not so sure of that but am reducing my pred as instructed. We will see what happens?
Has anyone investigated whether his problem is still really PMR. I have damaged my shoulder tendons as shown on an MRI.
Good Morning and thanks for your reply. I'm so sorry for your v-injury. These Rheumies are quite annoying at times with their viewpoints, but its not much we can do since they will not acknowledge how the PMR started. He does have a minor issue with his shoulder external to PMR, but the PMR caused the strain to become worse and the pain radiates to the other shoulder. He can barely lift his arms over his head and becomes extremely stiff during tapering. Thank you for the hope and encouragement. We wish you well also.
1. It’s true there is no cure for PMR, but it can be managed very well provided the patient is on the correct dose required, and that varies…..
2. PMR is known as a self limiting disease, and as such lasts as long as it thinks it will, very rarely it’s one year, sometimes 2 years, but for many nearer 3-5 years, sometimes longer- and very rarely forever.
Not sure that anyone knowledgeable on this forum would have quoted 18 months.
3. Diabetes is not a given, nor are many of the other side effects listed/quoted. Nor is adrenal failure, although whilst on higher dose, the adrenals do ‘go to sleep’ - in the vast majority of cases they do recover fully as patient reduce pre and come off it completely.
4. If your husband has a return of shoulder pain, then that may well be telling him that 5mg is not enough to control his PMR - at the moment and he needs to increase it temporarily. But he needs to find out what it causing the problem - even though you did say in first post that’s how it’s started… this link gives advice on dealing with a flare - healthunlocked.com/pmrgcauk...
Perhaps you - and you husband might like to read or reread this thread - it gives a realistic view of what to expect -
Good Morning and thank you for your reply. I'm so glad to see in your comment that "it rarely lasts forever". That gives me hope. His Rheumy also quoted 18 months. In fact, she just told him a week ago that he will come off of the Pred since he is approaching 1 year. She said by May, he can come off of it. Really? I always said that I did not like her approach. Perhaps there is not much else she can do, but she seems so non chant about everything. We will review the link you sent. Thanks for the info. I strongly rely on this community for answers, support and a realistic viewpoint of what to expect. Thanks.
You must have missed a lot if you picked up 18 months here at the start - because it isn't something we say! EVER! Some doctors might but experience says 18 months is in your dreams for most. Half of patients are off pred in just about 6 years - but that includes maybe 20% off pred in a year or so, about 1 in 3 have waved goodbye in 2 years.
No, there is no cure, there is no cure for any autoimmune mediated disorder - but PMR and GCA, unlike others like RA, lupus and so on, are generally self-limiting and the underlying autoimmune part burns out and goes into remission at some point for maybe 95% of patients. Once that has happened you are usually able to taper the pred down to zero although the longer it took, the harder it may be to reawaken the adrenal function. No, most people are NOT on pred forever, Most people's adrenal function will return if they taper slowly enough at the end, below 5mg.
You are never tapering the dose relentlessly to zero. You start with a dose that is higher than you will need and then titrate the dose to find the lowest effective dose, the lowest dose that manages the symptoms as well as the starting dose did. It sounds as if that is where he has reached - to be at 5mg in a year is well ahead of the curve - THAT averages out at about 18 months. He may be stuck at just above 5mg at present - but it doesn't mean he won't get lower, just not yet. Patience is the name of the game here! It sounds as if 5mg is a bit too low - try adding 5mg and take 10mg for a week and then fall back to 5.5mg or 6mg for a while if the shoulder pain is improved.
I have been on pred for nearly 14 years - no sign of diabetes last time we checked, my Hba1c was 36. No osteoporosis despite no bisphosphonates. I gained weight in the past - switched to a low carb diet and lost it again.
We won't dispute the booster factor - all vaccines, not just Covid can poke the immune system and result in PMR. But so can the illnesses they are designed to mitigate, or a load of other illnesses or other things that stress the immune system like physical, work or emotional stresses, chemical or environmental stresses, injury and a load of other potential factors encountered during life. What we WILL say is that there is no single identifiable cause, it is a final straw in an accumulation of stresses through life. The post-Covid "Long Covid" is almost certainly an autoimmune disorder similar to PMR. I have atrial fibrillation due to the autoimmune part of PMR having damaged the sinus node. It has been well managed until I had the bivalent booster this autumn - since that day it has been crazy. I'd had no problems with the previous 3 boosters though I had had a small flare with the 2nd Moderna jab at the start.
As I say, it sounds as if 5mg is a bit too low - try adding 5mg and take 10mg for a week and then fall back to 5.5mg or 6mg for a while if the shoulder pain is improved. And perhaps do have a plough through the FAQs rather than the general forum - they have moderated more general information, especially DorsetLady's introductory post. I doubt you'd leave them thinking PMR was an 18 months or a lifetime game.
Thank you for sharing and providing guidance. Wow, 14 years is a long time. I am glad that you have not experienced major adverse affects. Your post gives me hope. Thanks.
For goodness sake don’t let your husband’s rheumy stop his steroids if he is still in pain. A year in my opinion is much faster than the average dose of PMR. It is the PMR that decides when it goes into remission not your doctor.
Hi Piglette , I will share this great advice with him. I never felt good about his Rheumy from the very beginning. She seems very detached and provides no follow-up. She admitted to tapering too soon, which caused him pain and continues to say he will be off the pred by May, which will be 1 year and 2 months since this started. I'm afraid she is wrong based on his pain level when tapering down to 5mg or less. Thanks for your feedback.
After 3rd jab within 4 weeks got PMR . Year later my life changed drastically. About to try to sleep but I’m up 3/4,times a night. Been like that for 7 months. Dealing with weight and other stuff. It’s difficult. Good days & bad . Keep going we get there eventually
Hi Vito5566, I'm so sorry to hear this. It is a shame what is happening to people after taking that stuff. I will NEVER take any of it again. My husband was fine until he took that poison. Stay well and eat lots of immune building foods and supplements.
I was diagnosed with PMR, had been on prednisolone for 10 months, had tapered down to 3 mg/day, and felt good (i.e. no significant pain, able to be active in the garden and on the allotment etc.) before I had a flare and possible giant cell arteritis (GCA). In view of the serious things that GCA can cause, my rheumatology consultant put me up to 30 mg/day for a month, before starting a reasonably steep taper to my present dose (10 mg/day).
I am neither an expert nor a long-term member of the PMR club (yet!), but I believe getting off prednisolone in less than a year is almost unheard of. (Although I have seen a report of someone with a condition 'mimicking PMR', that was treated briefly with prednisolone, and was off it after 9 weeks. For those interested, of a medical or scientific inclination, the report is by Nielsen et al. Scand. J. Rheumatol. (2022) 51:411–413, DOI: doi.org/10.1080/03009742.20...
Like you - and your husband - I am not so fond of corticosteroids and their side effects that I want to stay on longer than absolutely necessary, but too fast a taper can be counterproductive in the long run. My current taper, as recommended by my rheumatology consultant, is to drop 1 mg/day each 4 weeks.
Also, have you seen my posts about temperature? There are a number of 'practical and operational issues' to negotiate, but I have found my temperature - and whether it is in my normal range or raised - to be a useful guide to how much inflammation I am experiencing. (It correlated well with the ESR and CRP inflammation markers and seems to be more sensitive than subjectively assessing how I feel.)
Thanks for sharing. I certainly hope that you do not have GCA. I'll share the Nielsen report and the temperature information with my husband. We appreciate your feedback. Stay well.
For some reason your link didn't work for me, claiming the article wasn't found. This does work - free, since Springer want 39.95 euros to read a 1 page letter!
Who knows? It’s different for everyone regarding a time scale. I can’t take the steroids so fortunately I won’t get the side effects but it means I’m stuck with this. It’s very hard when there’s no end in sight. I started with this at age 49. I’m 52 now.
Yes, the booster definitely caused it for my husband. I also came across information that stated the PMR showed up 3 months after taking the booster. That is exactly when my husband was diagnosed. Exactly 3 months later.
I think the boosters stopped much of the chronic illness that folks would have got if they hadn’t had them. Just for me it was perhaps too much. I had 6. No problems with first 4 just the last 2. It has left my arm aching when moving in certain positions but that is all.
I wouldn’t advise peeps not to have the boosters 😊
It is different for each individual. I was first diagnosed with pmr spring 2020 and was on prednisone until January of 22. I haven't needed it since but sometime over those few years I was also diagnosed with ra and now take hydroxycloraquin and methotrexate. I guess it's just a switch.
You've received some great advice from the PMR gurus.
I'm 8 years in, no diabetes so far, bones have remained stable, recently lost 30 pounds by eating less and moving more. My quality of life at age 74 is the envy of many friends. Currently enjoying our usual 6 month getaway from the Canadian winter in Panama, Central America .
PMR has been challenging at times throughout the years, however, this site has been my lifeline and has taught me how to accept, manage the disease and move on. Please come back with questions or to simply vent at any time.
You may want to have a look at a topic from 2 days ago titled "Is there any hope for anyone". It's a very popular topic with many wonderful stories.
Thanks for sharing. I am SO grateful for this community and the PMR gurus/pros that are immediately there for you when you come to this forum. I'm so grateful that I found this site. I hope to be as healthy when I turn 74. I'm praying that my husband is healed from this! Stay well.
It appears your husband and I may be in a similar situation. I’ve tried several times to get below 5.5 mg but haven’t yet been able to without significantly increasing pain and discomfort.
Rather than risk a flair and increase the odds of needing to yo-yo, I’m hovering at the 5.5-6mg level, where I have a pretty good QOL. Your husband may only need that extra little bit to enjoy much smoother sailing.
The reliable first-hand information from folks on this forum far exceeds any other source of medical information that I’ve found elsewhere, so I believe you’re plugged into the very best communication highway.
Thanks for sharing. I will pass this along to my husband. To be honest, I rely on this forum instead of his Rheumy. She is annoying and makes too many mistakes tapering him too fast. I already sought a second opinion from a male Rheumy so my husband could relate to what men feel in their bodies. I liked the male Rheumy better, not just because he was male, but because he listened. His bedside manners were better and he gave a more realistic viewpoint and approach to the tapering. I always come to this forum to get a second opinion of what we hear at the Rheumy's office because there is no comparison to hearing what people who has PMR are going through and what really works. Stay well.
I was first diagnosed in 2017. I was told eight months. It's been six years. I can get down to 2mg prednisone, but it never lasts. Right now I am on 4mg and I will stay there I think for the rest of my life. I was told my a GP that it is her experience that very few people with PMR ever get off prednisone. I've had 5 covid vaccines and covid twice. None of this has effected my PMR at all. Weather does effect my pain and stiffness. I think these things are individual and can't be a one size fits everyone.
Well, very interesting post mirroring my, and my long suffering wife's misery. It seems that what I and other PMR sufferers experience, PMR shoulder pain does not tend to "radiate" from one side to the other, but presents as bilateral pain, both shoulders, upper arms and sometimes bilateral pelvis and thigh pain. I have been on pred for 3 years and still struggling. They say PMR is "self-limiting" but I have not heard about many who have went into permanent remission. There is no cure. It's so discouraging. The key (everyone says) is the taper, and I bow to those with the better knowledge and experience. I can't get below 5mg, I hate pred, and it sure hates me, but here I go, into my fourth year, and like you and others, no end in sight. Sorry I could not be more positive, but at least you know you are not alone. I wish you both well.
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