I am a 74-year-old male clinical psychologist working four days a week. This is the first time I have posted on this website, but I'm already grateful for how much I've learned from the wisdom and experience on offer here.
I have had bursitis pain over my greater trochanters (top of my thigh on the side) beginning in November 2017 and getting gradually worse. Then I began to have soreness in my thigh muscles, followed by pain in my shoulders and neck. It got to the point where it was hard for me to get on and off the toilet, in and out of the car, and I couldn't get comfortable in bed and was losing sleep. An internist friend suggested the possibility of PMR along with some other possibilities. When I went on the internet I thought my symptoms fit PMR pretty well. My own doctor concurred, ordered blood tests and started me on 20 mg of Prednisone (here in the US they seem to use Prednisone instead of Prednisolone). My blood tests showed ESR=39, CRP=12. My symptoms rapidly went away and I was referred to a young Rheumatologist.
The Rheumatologist confirmed the diagnosis and put me on a protocol of 20 mg for a month, 15 for a month, 10 mg for a month, 9 mg for a month, and then reduce by 1 mg a month until no more prednisone. This young rheumatologist assured me that she had seen many cases of PMR and that 90% of them were able to get off all prednisone using this protocol in under two years. After getting down to 10 mg per day I've begun to have pain and stiffness in my hands and wrists upon awakening. The rheumatologist told me but It was probably unrelated to my PMR. On the Internet, I found that it was not an unusual PMR symptom and I began splitting my prednisone dose which seemed to help quite a bit. Both her assurance that it was 90% likely to be done with PMR in two years and the fact that she didn't know that tendinitis in the hand and wrist is associated with PMR made me less confident in my rheumatologist.
Thanks for bearing with me in this long history. My question is that now that I'm down to 7 mg per day I have tenderness and pain over my greater trochanters on both sides but more on the right. It’s not terrible but it does bother me and sometimes wakes me up in the AM. Should I continue to reduce my prednisone monthly, wait longer at 7 mg, or go back to 8 or even 10 mg to see if the pain will subside? Also, should I get a new rheumatologist? I would be grateful for anybody’s experience, thoughts or advice.
Written by
lew49
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I think that it is significant that you are experiencing pain in the areas you had at the onset of the disease. I feel that this could herald a flare and I would seriously consider going back to the dose you were last comfortable at. The average length of time to have PMR is around 6 years. Your young Rheumatologist does seem to be racing you off the steroids with predictable effect. On this site we recommend a slow taper, especially below 10 mgs. Once your symptoms have settled, it would be useful to try reducing by half a mg ( invest in a good pill cutter). I have been successful in reducing by half a mg one day a week, then 2-3-4-5-6-7 until I am on the new dose every day, then if all is well repeat the process. At around 7 mgs you have the added complication of your own Adrenal function having to wake up. The slow taper assists this process. You are probably experiencing quite significant fatigue.
There is a lot of ignorance about PMR within the medical profession, it is rare to find a Rheumatologist who has a special interest in the condition. The 2 year duration is, alas a bit of a myth. Stick with us for a while. There is a lot of knowledge and experience amongst the members.
PMR for 30 months, down to 6 mgs of Pred.
Hi Lew
Welcome to the Forum!
You did well reducing as suggested but now have reached a dose that’s not holding the symptoms at bay.
May l suggest returning to 10mg & from there reduce by 0.5mg per month, that was my late Consultants advice, it is suggested we decrease by no more than 10% & you may benefit from one of the slow reduction plans, as suggested by Sheffield Jane.
PMRPro/Dorset Lady will be along later & will send you some links (Jane & l are obviously awake very early, again!)
I agree with SheffieldJane. Sounds like your Rheumy has you on a textbook taper that is too fast and causing re-emergence of your original symptoms. At your current dose you may not be getting enough pred to address the inflammation. Going up a few mgs may help.
My Rheumy did the same and when I followed her tapering directions I flared and had to go back up to 15mgs for 5 weeks before starting my own, slower taper. She also insisted that PMR doesn’t affect the knees (which my orthopaedic surgeon told me was not accurate).
Others will likely post info about the duration of this condition (2-6 years), and other tapering suggestions. I’m still quite new in the ways of PMR (diagnosed May 2018). Many more on this forum have expertise and lived experience, and they generously share and support the members.
I told my GP I will give my Rheumy one more chance to work with me prioritizing my symptoms over blood tests, and see if she is someone who will work with me. No time to educate medical professionals about PMR, or to debate with them. They study this, specialize, therefore they should be up on the latest research and treatment.
I concur with your thoughts. I finally gave my Russian rheumatologist with a dictatorship type approach treatment the boot. I am seeing a new Dr., someone I hope is looking to work in a collaborative manner. Cossing my fingers hoping for a good fit.
It seems like good advice to go up to 10 mg. Just seems hard to go backwards. Also my current ESR=2 and my CRP=0.5. But from reading on this site, it seems like it’s more important to go by the symptoms than by the lab tests. Does that seem right?
Symptoms are the key - always. They arrive well before any increase in the blood markers (that’s if you have raised markers, some patients never do).
I know It seems like going backwards, but, despite your Rheumy’s over ambitious viewpoint, your PMR is still alive and kicking and you have obviously gone below the level of Pred you actually need on a day to day basis.
The fact that you work 4 days a week, however much you enjoy it, will not help your condition unless you manage to build in some meaningful “me time” for rest and recuperation.
Most if us on here who are retired have the utmost respect for those continuing to work, it does add pressure to your illness.
Have a look at the following -
One is my intro to PMR/GCA, purely personal and from a patients viewpoint,
Two is my slow taper, may be useful as you get into lower figures,
Three is a study into reactivating the Adrenal glands
Yep lew, in most cases 'Symptoms Rule' with PMR, and blood markers can be misleading for a number of reasons. Mine have been in the 'normal' range throughout, despite PMR symptoms coming and going.
I (and many of Us Lot) know what you mean about 'going backwards'. Psychologically it seems so, but this is the paradoxical nature (heterogeneity) of PMR symptoms - which can also be exacerbated by any or all of a host of external factors including viruses, infections, injuries, co-morbidities, Stress, and even changing weather conditions.
We often just have roll-with these variables and, if necessary, adjust the Pred dosage +/- in context..
"This young rheumatologist assured me that she had seen many cases of PMR and that 90% of them were able to get off all prednisone using this protocol in under two years."
B*££.... Maybe 20% of ALL patients are off pred in under 2 years. More likely that she didn't diagnose them correctly in the first place. Many patients would assume she was right when she told them pain couldn't be PMR if it was still there after 2 years so would not go back. And I feel that was a brutal reduction - nothing like the only 10% at a time recommended by real experts.
Trochanteric bursitis is not unusual alongside PMR - and the inflammation is fed by the autoimmune part of PMR. It was your herald and like SJ I'd say it was heralding a flare. Were you pain-free (or pain-free as you ever were) at 8mg? When did the hip pain get too uncomfortable to ignore? Has anyone every suggested steroid shots for the hip bursitis? Not into the joint by the way - local, over the point that hurts most when poked at.
And while I'm at it - my version of a slow taper which is part of a study in the NE of England:
I've had regular bouts of hip bursitis and a 6 week episode of costochondritis (ribs / sternum) during my PMR journey - which I'm certain is the inflammatory stuff rampaging around and finding new locations to settle in for a while...
I think the others here have said it all, but you might like to read a recent paper from the British Society of Rheumatologists about the management of PMR. One significant part is Section 7 which states (q):
"Duration of treatment and follow-up:
Usually 1–3 years of treatment, although some will require small doses of steroids beyond this. Flexibility in approach is necessary given the heterogeneous nature of disease. Steroids may be stopped when the patient is asymptomatic from their inflammatory symptoms".
The terms 'usually..' and 'heterogeneous..' together suggest that nothing is certain with the duration of PMR and / or the management of it - despite some medics hanging-on to the 'over in 2 years / reduce Pred by 'x' per month' narrative! At one time I had a rather dogmatic young GP like yours, and when I quoted the paper to her Practice Manager, 'Bingo', I was offered a consultation with a senior GP who took a far more flexible approach. Food for thought..?
For some reason I can't upload a link to the paper here but if you dial-in 'BSR and BHPR guidelines on the management of polymyalgia rheumatic...' on google you should find it easily.
Hope this helps and please keep us posted on your progress.
I have discovered that if you have pain STOP reducing, trying to sweat it out does not work. In fact you may even need to increase a bit, just go back to the dose where you were last comfortable. Give it a week or two and then try reducing again slowly when you feel comfortable.
I had a young GP who gave me the impression she had seen dozens of people with PMR. I discovered a while later I was the only person she had ever seen! That might have explained why she seemed to know nothing about the subject. I wonder how many people your rheumatogist has really seen?
I am deeply touched by the Energy and thought that has come back to me from posting on this website. In less than 12 hours from my post!
I have decided to go back up to 10 mg a day and see whether that helps my symptoms. I’ve asked my internist to find me a new rheumatologist, preferably one that has a particular interest in PMR. I also live near two major medical centers, University of California at San Francisco, and Stanford University and I can investigate if there’s a rheumatologist there with a PMR specialty.
If my bursitis doesn’t subside on 10 mg of prednisone, I will see if I can arrange for Prednisone Injections as suggested by one of my respondents here.
Finally, on the subject of stress. I love my practice of psychotherapy. I’m an expert on anxiety, trauma and particularly PTSD— and I am very effective in treating these issues. So I am not inclined to stop working. In addition I have to support my 99-year-old mother. But I will be careful not to cram in extra patients at the beginning or the end of the day, and to be more diligent about meditation. I will also continue to try to get regular exercise. Unfortunately right now I’m also dealing with Achilles tendon -itis.
Feedback from this PMR group has been so helpful. I am Enormously grateful. I was feeling stuck and discouraged, but now feel I can take action and move forward.
I plan to continue participating in this wonderful group. I will keep you updated on my progress or lack of progress. I look forward to hearing more wise counsel from this group.
With regard to your achilles tendonitis i'm not sure if you've seen any of my recent posts about my experience of this. I have GCA which means higher doses of Pred than for PMR only but I am now also aware it is not just long term use of corticosteroids which can lead to this but for some even 'lower' 'short-term' doses. I wont go into lots of detail here but unfortunately for some of us this can be a significant side-effect. It is 'interesting' (if not a little 'sinister') to note that even the architecture of our bodies can be weakened and affected this way:
'Vasculitis has been implicated in spontaneous Achilles tendon rupture in a case report [5]. Biopsies of the tendon in the patient revealed focal lesions of systemic angiitis. However, the patient was also taking concurrent corticosteroids, although the dose and temporal relation of the treatment to the complication were not included in the report. Histologic studies in patients with collagen-vascular disease, who have perivascular involvement, have shown derangements in the microarchitecture of the tendons and collagen tissue. These derangements lead to loss of structural integrity of the tendon and predisposition towards spontaneous rupture'
You may like to look at the full text of this article available online - i wont post the link as then it will take time no doubt to be moderated.
'Acute Spontaneous Achilles Tendon Rupture in a Patient with Giant Cell Arteritis'
T. Jared Bunch1, Gail A. Welsh1, Dylan V. Miller2 and V. Santhi Swaroop1
I am not suggesting you have a ruptured tendon but there is quite a lot of info around which highlights how this weakness can develop. Others on this forum have also had this happen as well - and it can be quite disabling - I am hobbling around after a few weeks but feel mine is improving as I taper down.
Hi Lew, just to add that I wish you all the best. This group is indeed a lifesaver on this lonely PMR journey. Lots of excellent, sound advice and a few laughs. Feel free to rant, complain, ask advice, tell a story. Lots of friends on here.
I can’t offer advice about PMR per se, as right now I am waiting to get a dx and am dependent on the expert advice and goodwill of people on this site. I am interested, however, in your experience of rheumatologists. What follows is a bit of a rant but I also hope there might be something useful to you in it. I was treated for 20 years for other, overlapping autoimmune diseases by a rheumatologist in private practice and in consultation with doctors at research and teaching hospitals in Los Angeles, SF, and Palo Alto. The rheumatologists at UCSF saved my life when I had AI hepatitis, and they were very kind and clinically oriented. At Stanford, where some clout got me seen, they seemed more interested in drug trials and their genetic research and much less patient-oriented. All this was 10-20 yrs ago. When PMR came up recently, I called my old, now-retired doctors who recommended the Vasculitis division at UCSF. Perhaps this will be of help to you now.
Last fall I moved from L.A. to Ch’ville VA . Here, my rheumatologist, trained at UCSF and now at a another teaching and research hospital, is a youngish 50 and very by the book. He thinks my ESR of 67 is age appropriate and is more interested in getting me off prednisone than in trying to treat the PMR he first mentioned. I had such kind and intelligent experts in the past, it is dispiriting to find now that young hotshots want to undermine all past diagnoses of which they have no firsthand experience. (There are only a handful of rheumatologists here in Ch’ville and they are all at UVa.) I wonder what sort of success you’ll have seeing another specialist.
It would seem that doctors in the UK are better informed about PMR than in the US. I suppose I am venting now. One other thought about symptoms: my trochanteric bursitis always responded in the past to steroid shots. This time the hip pain is resistant and I think it is PMR!
Who on earth thinks an ESR of 67 is "age-appropriate"? He needs to go back for retraining because that is NOT "by the book". The upper level of ESR should be under 30 by ANY standards and recently it has been accepted that over 20 indicates there is something going on that shouldn't be.
And no - I fear there are prats in the UK too - I was undiagnosed for 5 years! The 2 rheumies I saw were as bad as the GP. Different GP - very different story.
Your experience counts, piglette! 😊 I'm thinking of the efforts made by the PMR/GCA charity and the fact that people on this site feel they can show links to information to their doctors. I can't imagine doing that with my fairly nice GP, much less any rheumatologist I have seen. A case of the grass is greener?
I dove straight in without offering you a warm welcome. It was the wee small hours in the U.K. So welcome to the site! The very best of luck with your new regime and in finding an engaged Rheumatologist.
Caring for a loved one and doing a satisfying, caring job can be a massive emotional drain, especially with an autoimmune disease. Great to hear about your meditation practice. I hope that you have access to emotional support yourself. Your patients are lucky to have such a dedicated helper.
I have gone back up to 10mg pred and my trochanteric bursitis is not gone but has improved gradually over the week. My internist agreed with going back up to 10mg pred and has suggested a different rheumatologist. Except for my Achilles tendinitis, I am feeling much better. I went for a mountain bike ride in the hills yesterday and took it easy, but it was great to be out in the woods again.
Thanks so much for all your support and I will keep you posted on my PMR journey.
Lewis
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