I am a 67 year old male diagnosed in Nov after presenting with extreme stiffness and pain. Unable to get up out of a chair, put on a shirt or put my arms above my head without assistance. ESR normal CRP 29. Initially prescribed a 12 day steroid burst, 60, 40, 20, 10. Within 3 hours of initial 60mg dose it was like it never happened. PCP refereed me to neurologists for additional test. Nerve tests were conducted two days after my last 10 mg dose and I was very limited in my mobility. Based on my observed condition normal nerve and muscle response the neurologist prescribed an additional burst 60/40/20/10 of prednisone over a four week period and referred me to a rheumatologist. 10 mg was insufficient to control the symptoms so in consult with the neurologist and PCP I increased prednisone to 15 mg through the holiday. Beginning the second week in January rheumy started me back at 20mg and has been checking blood markers and tapering the prednisone. I am currently at 10 mg heading to 9 next month.
What causes me uncertainty is the fact that although I have very little pain and stiffness, especially compared to Oct/Nov I have lingering stiffness and pain in my upper right arm. It wakes me typically in the 4 am time frame and I have to use my left arm to move it and work out the stiffness. I am assuming the pain is from tenosinovitis of the bicep. PT has had no impact. The left shoulder has been surgically reconstructed twice and LH bicep tendon has been released for years. As I recall even at the height of my inflammation the right arm was more severe with respect to pain and stiffness. Otherwise at 10 mg I have good days and bad as regards energy and endurance but generally continue to feel like crap.
Does anyone else experience a one side dominant response to PMR? Has anyone else experienced a different response in a surgically repaired joint. I asked my Rheumatologist this morning if she was confident in the PMR diagnosis, her response was, are you? Hence my uncertainty.
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Chancegdnr
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Unilateral symptoms are unusual in PMR - the bilateral aspect is characteristic really. On the other hand - if the 10mg is enough to manage the daily top-ups of inflammation you won't experience the rest of the PMR problems BUT that doesn't exempt you from other problems - such as those due to myofascial pain syndrome or damage to a joint for some other reason.
I think you have been horribly messed about - bursts of pred don't work when it is PMR and often yoyoing the dose like that leads to problems in the long run. Have they checked the blood flow to your right arm? Or looked to see if there is any rotator cuff or other mechanical damage?
Yes I have had X-ray and mri as part of the neurological work up as well as full myositis blood panel. Some arthritis in the shoulder and minor stenosis in the neck identified but not considered to be likely source of discomfort. The pain improves dramatically in the first hour of awakening and movement. Having been through the reconstruction of the left shoulder I am familiar with the mechanical damage, this does indeed feel different. Both shoulders were impacted in the oct “flare”.
To be fair I think the initial burst was prescribed to give me some relief while the neurologist was scheduled. I was in a desperate condition. I expect the high dosage was a precaution related to potential GCA risk. I have had no headache or jaw pain. It seemed to be a standard “steroid pack” response. Once the rheumatologist got involved the steroid regimen has been ordinary. 20 mg start 2.5 taper/3 weeks to 10 for 4weeks. Next up is -1 mg per month.
I have never come across that pattern of prescribing before. Was the rationale explained to you?
You are now at something I do recognise ie the 20 mgs a day, mopping up most symptoms. Then a successful taper towards 9 mgs.Your right upper arm pain and stiffness is something I don’t recognise. I feel that you have something additional going on there alongside PMR that warrants further investigation. It’s interesting though, that you have less pain and stiffness from a surgically reconstructed shoulder. Was this due to an injury?
It never fills us with confidence when a medic puts it back on you. Are you medically trained?
This needs to be sorted. The 4 am is interesting too. Around when the body sheds the cytokines, I mean the inflammatory substance - good time to take Pred with some yoghurt.
Let us know what happens with you. What a rollercoaster ride.
I tried to addressed the “rational” for the steroid burst in my reply to PMRpro.
The onset of what I am calling the oct flare came about at the end of a multi week road trip doing tourist things one of which involve a long walking tour which I knew was going to leave me leg tired it turned out to be much more than that. I knew I was in trouble on the way home but also knew I had my scheduled check up with my physician upon arrival I fully expected alarm bell and sirens when I met with the doctor but she was all smiles and happy with my labs. After the examination of my pain and mobility she said she suspected PMR and ordered the sed rate tests I did not make it for the full week until next appointment I crashed big time couldn’t get out of bed if I got in, couldn’t dress, was stuck in what ever chair until someone helped me up. My wife walked me into my doctors practice without appointment and saw another physician. The labs were back crp was elevated and I was virtually immobile. The 60/40/20/10 burst was a mercy shot. Within four hours of first dose I was nearly perfect the pain started to return once I was down to 10 but I was fully functional until the second day at zero. During these 12 days I was screened by the neurologist and had blood drawn for the myositis tests. The second burst was prescribed after the nerve test for the period until the rheumatologist could see me. I feel like I have been given good care but apparently with PMR there is a process of elimination as opposed to direct diagnosis. My concern now is the evidence (one sided pain) does not match the conclusion.
The shoulder reconstruction was from an injury that happened a long time ago. The original reconstruction was done by the VA medical folks and there was nothing delicate about it. I had an arthroscopic clean up done about 8 years ago and that is when the surgeon told me that the long head tendon had been previously released. That shoulder has been “trick” for so long I barely notice. I have always joked with my primary care guy/gal that I would be the last man to recognize a heart attack because of the constant ache and occasional drop you to your knees pain on my left side. Funny since the oct flare I don’t even notice the left side anymore.
It may have been perceived as a mercy shot - but if it really IS PMR then 20mg would almost certainly have been plenty to achieve a similar result, even 15mg might have been enough. That is one of the criteria for PMR: it responds to a moderate dose of pred (not above 20mg). Other things will respond to the very high doses - and that muddies the water.
PMRpro, thank you for chiming in, muddy water indeed. I cannot escape the feeling that I am six months into a journey, wired on prednisone with no idea of the destination. Every side effect that is intolerable is countered with another drug in a cascade of unpleasant and unnatural sensations. Those side effects that are tolerable just make me unpleasant company. I will continue to lurk and post any news when it comes. Thanks to all and best wishes.
What side effects are being dealt with with more medication? The more they add the more the problems they create and it is quite possible to deal with many pred side effects without medication - or by changing the medication they are using.
The initial side effects were what is usually anticipated I suppose. Pantoprazole was prescribed concurrently with the prednisone to protect my stomach. The resultant general GI distress is more of a nuisance than anything else. I had significant tremor, episodic blurred vision and a loss of concentration that has subsided some as dosage has reduced toward 10 mg. These are what I classify as tolerable. About eight weeks into the steady state dosage (15-12.5mg transition) I began to suffer extreme anxiety, a need to get up and move and a sensation of not being able to breath or swallow. Episodic at first and it passed within an hour or so, and then it didn’t pass. No physiological problems identified and I was prescribed an anti depressant as a long term mitigation and an anti anxiety med to get me over the rough spots until the anti depressant becomes fully effective. It seems to be working as I have managed to sleep some in the last couple days. I have no history of this kind of reaction prior to prednisone.
For me, I have a difficult time determining if the a particular symptom is attributable to the disease, the drugs, or the depression that has become a black dog in my daily experience. I’ll stop whining now.
I would ask to try using ranitidine and possibly gaviscon if that isn't enough - does the same as a PPI but has totally different side effects. PPIs can really do a number on the gut! One thing less hopefully. Many of us manage with just yoghurt - which really can help a lot. You are in the US so can't get gastro-resistant pred.
Mental effects are a problem - bt they do usually reduce as the dose reduces. I do hope so.
Nothing useful to add. Your doctors do seem thorough. The steroid bursts and high dose make sense in a GCA context. I would be interested to know the outcome. Wishing you the best of luck with this.
It isn’t at all surprising that you should have feelings of “uncertainty” with the simple question you put to your rheumatologist having been put back to you.
The symptoms you describe along with the raised CRP do sound very PMR-ish, especially when your good response to the initial burst of steroids is taken into account. Having said that, such a high dose is more than likely to ease the pain of many ills.
Your long-standing shoulder injury does rather muddy the waters for you with all this, especially as the pain/stiffness of PMR usually manifests itself bilaterally. I remember with a spinal slippage playing up during my PMR/GCA/steroid days, it became very difficult knowing which pain was which.
The two unusual short-term bursts of steroids starting at very high doses have got you into a yo-yo situation and we have seen others experience difficulties after getting into similar situations in the past. With PMR, it is important to start on a dose of around 15-20mgs initially (occasionally slightly higher) and then remaining on that dose for a good 4-6 weeks to ensure the inflammation is under control (via response and repeat bloods being normalised) before trying a reduction, and that by no more than 10% at any one time. I do hope this helps and that some further investigation will produce the right answers for you.
Pleased to see Celtic's comments about the more usual rate of tapering from an initial dose of 15 or 20. I gather from one of your comments that your expected taper is scheduled to be significantly faster than that? You seem to have a good idea which pain is the "usual" for you, from the mechanical problems of the past, and what is part of the new suite of symptoms which are probably PMR, so I think if the PMRish symptoms haven't abated, and been settled for at least a week (longer would be preferable) before the tapering is to begin you should see if it can be deferred until you do have that pain under control. And steps of 2.5 are usually too uncomfortable, so many of us use much slower methods. As PMRpro is wont to say "It isn't slow if it works". All the best.
My PMR flared last summer as bursitis in both hip joints and both shoulder joints. The flare started in my left hip and it was several weeks before the other hip and shoulders were affected. An increase in pred dose dealt with my hips fairly quickly, but my shoulders took longer to heal. Since then, my right shoulder has never been 100% - I'm right-handed and use it much more than my left (although I'm trying to develop ambidexterity!)
For the past month, my right upper arm has been more troublesome, but I was hoping it wasn't the PMR. Now my left arm has joined in and just this morning, my blood results show elevated CRP and ESR, which my GP feels is likley to be a PMR flare. I'm sure he's right. (He's working on Good Friday!)
No Easter egg for me - just a few more mg of pred!
Me: PMR 22 months, 1 flare at 12 months and now another. Back up to 8mg today.
You may have GCA and if you do the dose might need to get to 60 before you get relief. Also, if you have gca another option is to get on Actemra biologic shot to avoid high dose prednisone. In states it’s available free under Medicare or other insurance if one meets both medical and financial guidelines.
Any heart related symptoms, sore scalp, jaw pain, pressure in head, which are GCA symptoms, eye symptoms . Mine was double vision. Sore scalp, jaw pain and pressure behind ears. Sometimes I would feel like my head was blowing up. All those are gone but I deal with lots of shoulder and back pain. I can get out of a chair or the car on my own now. Still tough getting up off floor from bending position.
Thanks for the input, I have been keenly aware of the GCA risk since I first learned of PMR. I was prepping for cataract surgery before I fell ill and while I have postponed that procedure until I am more confident of my general condition the Optomologist is aware of the PMR diagnosis and prednisone treatment. I did have some scalp tenderness but all of the vision issues blurry vision, fluttering lines in periphery have been attributed to steroid side effects. None of the physicians on the team have felt it was necessary to do a biopsy as of yet. It has been a thrilling 6 months.
No point in a biopsy (I assume you mean of the temporal artery to check for giant cells?) after months on pred anyway. So put your mind to rest on that score. Pred at the doses you've been on will have dealt with giant cells by now. It's best to go by symptoms, although I understand there is some sort of scan of the arteries which can be done although not all places have the means.
Hello Chancegdnr. You've received a lot of great feedback. However, unless I missed it, no one has commented on the speed of your reduction. You stated you were diagnosed in November and after the bursts of prednisone were put on 20 mg in the middle of January. I find it both interesting and troubling that you are presently at 10 mg heading to 9 mg. Even if you have "little" pain and stiffness you have reduced very quickly. The recommendation is to stay at the original dose for up to a month and to reduce no more than 10% at a time ever month. You may be placing yourself in a position for a further flare.
This is my second reply because I just reread your post. You have not been given enough time on your prednisone. I did see someone else tell you the dosing schedule. That’s rather imperative to find a doc that will dose as stated, even if you need to change docs. I have seen at least 5 or 6. Honestly don’t understand why this happens to us. The literature from the best hospitals are all on board with the need for high doses and proper times. Good luck.🍀
Just a quick update for those following this thread. Today is day 15 at 9 mg and not much change to my symptoms. Early morning pain and stiffness is still isolated to right upper arm and it still shakes out fairly quickly. I have noticed some increase in early morning stiffness on both hips but nothing that limits my mobility and it too shakes out fairly quickly with a short walk. GI distress, vision anomalies and anxiety are fading as the dosage is drawn down. Rheumatologist is planning to continue 1mg per month reduction. Neurologist is recommending steroid injections into c4,5 in my neck, I am not a fan of that proposal and am deferring my decision until I have the opportunity to confer with other physicians.
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