PMR Remission

@pacarolyn
I do warm yoga which really helps and I have been going to a therapy pool and love it. My range of motion is normal in the pool and the warmth is wonderful. They offer pool noodle classes which are lots of fun. I am now on 12.5 mg of Prednisone, having started on Nov 26 at 15 mg. I was lucky that my doctor was able to contact a rheumatologist on the day of the diagnosis who recommended the treatment. This was in Calgary, Alberta. Sometimes Canada has a great health system.

@phogan0609 I am so sorry that you are experiencing so much pain. Research shows that there is a small percentage of PMR patients who have normal inflammation rates. I am one of them. I started having Symptoms (debilitating bilateral neck, shoulder & hip girdle pain) in March of this year (at age 54) and, after a lot of research, I diagnosed myself with PMR. Initially, both my primary physician and rheumatologist insisted that I likely had arthritis because my inflammation lab results (CRP and sed-rate) were normal and I was quite young as compared to most PMR patients. However, after my x-rays showed no arthritis, I insisted on taking 20 mg of prednisone. Except for lingering mild bursitis on my right shoulders, all of my symptoms disappeared within 48 hours. My rheumatologist wanted me to taper off prednisone quickly, but I advised her that a quick taper is the main cause of relapses, according to studies. Within a month, I tapered down to 10 mg and started reducing my dosage by 1 mg every month. I am doing well at the moment and my Rheumatologist agrees that we should go by my symptoms rather than my lab results as part of my treatment. If you are still suffering from debilitating, bilateral pain, you are not in remission but are likely experiencing a PMR flare because you may have tapered off prednisone too quickly, causing adrenal insufficiency. A slow taper is key to getting your symptoms under control. Please talk to your doctor. You should not be experiencing so much pain if you are truly "in remission." Also, keep in mind that prednisone initially makes (almost) everything feel better so it is extremely important for you to be able to distinguish whether the pain you are experiencing now or as you taper down is truly due to PMR rather than some other condition. For instance, as I reduce my prednisone dose, my lower back pain is gradually coming back but I know that this is due to pre-existing osteoarthritis (OA) which I already had before I came down with PMR. Generally, PMR pain is on BOTH sides of your neck and/or shoulders and/or hips, etc.

@e441300 Thank you. I usually post on HealthUnlocked but this Mayo site looks good too. I have had PMR fir 9 years and am currently on 2 mgs. I have read that it is quite common to have normal blood level readings but still have PMR.

@judith75

Mayo is a great site especially if you are from the USA. The things we discuss here are more pertinent to how PMR/GCA are treated here. Also our health care systems are different. Our perceptions of prednisone are different too. I'm grateful that there is a great PMR/GCA forum in the USA too.

I used to contribute to the HealthUnlocked PMR site until I was told my experiences with how PMR was treated in the USA wasn't pertinent to them. I had to agree with the resident expert on the HealthUnlocked forum because there were only a few on that forum being treated with a biologic to get them off prednisone.

I loved the HealthUnlocked forum when everyone was allowed to share their own personal experiences regardless of whether it was pertinent or not. There were only a few who responded to everyone that were the sole arbiters of what was pertinent.

Everyone on both forums has a lot in common simply because we all share a common diagnosis. I don't think there are any absolutely right ways for how we taper prednisone or how our conditions are treated. I don't think we all have exactly the same personal experiences.

@dadcue I remember you from HealthUnlocked. I am Louisa 1840 on that wonderful forum. Yes, you are right in that each country would have its own protocols and ways of dealing with PMR. I would have to disagree with what you were told about your experiences not being pertinent to them as so many contributors are from the U.S A. surely?
I am in beautiful Tasmania, Australia and I am sure that we too have our different approaches? Surely we can all borrow and learn from each other ( I am speaking of them here and not YOU obviously. One of their major contributors can be a little too direct and I know she has alienated quite a few)
I so agree with your last para. I have a brother who lives in the UK (where I am from originally) who was diagnosed with PMR six months before me. He is just about at ZERO (and yes we're going to have a party, albeit via WhatsApp!). That doesn't mean that I will get to zero at the same time. As you say we are all different and there are many factors that would differentiate us. All the best and may 2026 be a really healthy year for you....

@judith75

I remember someone identifying as Louisa but I'm not sure about 1840. I didn't know you were from Australia. Let me be the first to welcome you to the Mayo forum if you haven't been welcomed already.

I was in Sydney a few months ago. The small part of Australia I saw was beautiful. It was my first time being in Australia and I'm already thinking about going back to Australia for a second time. I spent most of the time in Sydney but I was also in Eden, Australia.

I didn't feel like the entire HealthUnlocked PMR forum felt my experience wasn't pertinent. It was mostly the one that was a little too direct. She seemed to think she was entitled to know everything and didn't filter some of her responses to me. It was just my personal experience with a couple of posters. I didn't mean to implicate the entire forum.

I remember people from Australia. LemonZest was one and I remember she was petitioning the government to receive a biologic. There are a few Australians on this forum too but I don't really care where people are from. I value anyone that wants to share their personal experiences.

I miss the HealthUnlocked forum and enjoyed sharing my personal experiences. I'm happy to be off prednisone for the last 5 years after 12 long years of taking prednisone daily. I would encourage everyone to keep trying to do the same.

Let me know when you and your brother get to zero. I will party with you!

@dadcue Thank you for your welcome! If ever you make it to Tasmania we run a holiday cottage at the top of our garden. It's called 19 Blue and is lovely!
The rather direct person on HU has upset more than one person but she is a fount of knowledge. It's encouraging to know that you got off prednisone after 12 years. I'm only on 2 mgs ATM but I had Hives at the beginning of December and guess what the treatment (plus antihistamines) was for that? Yup, 50 mgs of pred for a few days. So, my poor body was in a bit of turmoil and the adrenals are wondering what to do. I have experienced extra fatigue since then....
We shall all party virtually when my Bro and I get to ZERO!!!

@judith75

Don't let hives and going back to 50 mg discourage you. When I tapered off prednisone the first time, I needed 60 mg of prednisone again to treat a flare of uveitis. It was an interesting experience because Actemra (tocilizumab) was only intended to treat PMR and not uveitis. A TNF-inhibitor is preferred to treat and to prevent flares of recurrent uveitis.
https://www.retina-specialist.com/article/taking-treatment-beyond-adalimumab
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I won't go into too many details but 3 specialists couldn't agree on what should be done. My ophthalmologist overruled and stopped Actemra and started me on Humira saying I should have been on Humira years ago. The consensus was that Actemra wasn't going to work for uveitis. Since uveitis can cause vision loss if not treated quickly -- the stakes were high.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
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Humira might have worked for uveitis because it went into remission quickly but 60 mg of Prednisone probably had more to do with it. Unfortunately, when I tapered back to 15 mg, my body pain returned. Since I needed to give Humira a 3 month chance to work, the pain only got worse. I couldn't taper any lower than 15 mg of Prednisone.

After 3 months, my rheumatologist intervened and talked to my ophthalmologist. I don't know what all was discussed but the novel idea was to let me decide which biologic worked the best for me. I could pick either Humira or Actemra but not both. I chose Actemra because the pain was intolerable and uveitis was in remission.

In about a month, I went from 15 mg to zero again ... so much for a slow taper. The endocrinologist who helped me overcome adrenal insufficiency the first time I tapered off prednisone said my cortisol level was still "adequate" because I didn't need prednisone very long the second time. I needed Prednisone a total of 4 months ---- 3 months to make sure uveitis was in remission while Actemra needed an additional month to put PMR back into remission.

I have now been on Actemra for a total of 7 years with no major side effects or relapses of anything. My rheumatologist, ophthalmologist and endocrinolgist all have differing opinions but they are all in agreement that being off prednisone is best for me. I'm still being treated with a monthly infusion of Actemra ... not Humira.

The person on HU who was a little too direct was pushing for prednisone for the rest of my life which lacked some basic understanding. She claimed doctors in the USA were breaking all the rules for treating PMR with Actemra. When I respectfully disagreed, she said I was being disrespectful for disagreeing with her!

@dadcue You have been through the woods! After some bad experiences here in Tasmania I have steered clear of specialists. I have a good and very understanding GP. HealthUnlocked and now this site. Also being able to compare notes with my brother in the UK has been a godsend. I have never tried a biologic. I read of a rheumatologist (now retired I believe) who felt there was no harm on being a very low dose of pred for the rest of one's life. At 2 mgs a day I dont feel any rush to try and reduce further at least for the time being. It is the fatigue that really gets to me though I know it's just a reluctant adrenal system ....I did manage to drop to half a mg on alternate days a couple of months ago but I had a PMR flare. I will sit here for a while .......

@ christopherc
Thank you for for starting this thread, I, like everybody that gets diagnosed with PMR, want to know what to expect. I appreciate all of the feedback