Good morning after 5 years next month on steroids with a PMR diagnosis I am headed down a different treatment path. I spoke to a musculoskeletal specialist in UK who questioned if I had ever had PMR due to my original diagnosis blood test showing a CRP result of 6 and an ESR of 1, whilst acknowledging totally some people dont have raised figures he thought these were really so at the low end and even after 4.5 years I was unable to move below 12.5 mg of prednisone as the pain just became too much. He questioned my lifestyle & discovered the pains in hips thighs, neck & shoulders started when I moved to Spain to take on a demanding job running a retreat house doing all the cleaning on hard tiled floors and cooking 3 meals a day, Carrying shopping and everything else. His belief was I was like a sportsman playing a professional game with no training. He told me to find a musculoskeletal specialist in Spain to treat me and see what they thought and suggested a sports injury specialist. Moving on 6 months I have a sports specialist treating me. I am down to 6.25 of pred in an almost cold turkey fashion as they wanted to see what showed up as I dropped the drugs down. I now have a diagnosis of Hypermobility which I knew about but not the impact on ligaments and tendons. I have an unstable spine at L4 and L5 causing pain into both legs as the nerves get hit. I have trochanteric Bursitis and massively inflamed Gluteal tendonitis. These are being treated with directed steroid injections under ultrasound to enable core strength exercises to begin. The next radical treatment into my plan is PRP where they take my blood spin it take out the platelets and reinject.( Its not that tested but they don't think I have anything to loose)I am still in pain but not all over and it means I dont use steroids to mask pain and then cause more damage. I am still under the Rheumatologist as I reduce steroids (different one) & they are more than happy with the plan as they inherited me 3 years ago already on the steroid path but didn't make the original diagnosis. A key factor in all of this is hypermobility causes many problems as you over use parts of your body and its often bilaterally. Anyway just thought I would let you know where I am now. Thanks so much for everyone's support on here. Its been a lifesaver at times.
Maybe not PMR update 5 years on: Good morning after... - PMRGCAuk
Maybe not PMR update 5 years on
Okay thanks for update... but don't be too gung-ho about reducing steroids... you have been on them a long time and your adrenals may well struggle in the months to come.
Keep in touch.
Thank you. They want me at 5mg then take it much slower.
That’s very interesting.
There may some boosting of your oral Pred dose but the local steroid injections. How much is hard to say but be mindful. Some people here have said their injections made a difference to their general PMR.
Sorry to hear this news after so long on the PMR road.
Hypermobility makes me wonder if they have done genetic testing for Ehlers-Danlos syndrome? There is a support group on HealthUnlocked
I have a friend who has it along with here son, and now a grandchild. I had never heard of it before. There is a review of the different types on wikipedia
en.wikipedia.org/wiki/Ehler...
Good luck with your journey on a different road.
I had PRP (platelet) treatment on both knees in Spain at a private Hospital. It was developed in Spain and they are very proficient at it. My knees are end stage (stage 4 OA) and extremely painful. It really helped but only for three months. However, steroid injections don’t even touch the pain at all. They say we all differ and some people get the benefit of PRP for a year. Hope it helps you
Thank you. For me it will be into the Gluteal tendon on the right and into the L4-L5 area. The aim is enough repair to then be able to do strengthening exercises especially of my core. I don't have any osteoarthritis just tendonitis in many areas. I am glad it worked for a while for you. This is at a private sports clinic in Alicante where they we continue the rehabilitation in the gym.
Thanks for telling us about this, it's really interesting to me because I suffer from tendonitis in various places, thankfully not all at once. At the moment it's the tendon at the back of my knee. I also get it in my elbows, shoulders, hips and ankles. My GP has sent me for XRays which confirmed no arthritis but MRI and ultrasound showed inflammation. My CRP and ESR were sky high when I developed PMR and GCA though, and the pred made me feel like 21 again.
Now I'm down to half a mg, my tendonitis is back. The GP has no idea why I keep getting it, and various internet searches only suggest a lack of fitness. But I have always been very stiff jointed, for example my fingers do not bend back at all. I struggled to do gym at school and yoga was impossible.
I would be interested to hear how your progress goes and if you find a treatment that works, so please keep us updated.
The same happens to me: at 7mg I am stable. at 6mg after a couple of weeks the bicep and elbow tendinitis starts up again if I do ANYTHING using my hands. The rheumy is perfectly happy at that and will leave it there. I have tried at least 4 or 5 times to get to 6mg, everytime the tendinitis is back, it is part of the PMR. And bear in mind - I am also on Actemra to get to 7mg, never mind any lower!
everytime the tendinitis is back, it is part of the PMR. Do you think this is the case? I had tendonitis for many years before PMR. It is never bilateral either, thank goodness, or I would be totally crippled by it!
Both my biceps are involved - only the left elbow mercifully. But my rheumy is happy they are part of the same problem. It might not be - but how can you tell?
You cant on blanket steroids which is why they said take time off work its going to hurt but lets see what pain are you left with if you reduce. I have had 5 MRi scans in 5 weeks watching what's happening. Blanket steroids are not a long term solution to it if its not PMR as it is not targeted. Because tendonitis is inflammation if you are a steroid responder which I certainly am it helps. But it never stops it and for me I have now overworked parts that needed treatment and rest but specific areas. Who knows I could be clutching at straws but it seems to make sense.
the steroid injections I have only make a difference to my PMR if it’s the general depo medrone injection in the bottom, & not the specific injection into my hip area for my bursitis or my wrists for arthritis. This time, the bursitis injection worked well for 2 months. However this week we moved two large trees into the ground from their pots & now my bursitis is as bad as ever. I tell you this because it was carrying heavy shopping that triggered mine, & has re-triggered it over the years…& seems to be, I realise, a part of your job! Think laterally, would a camping trolley help to move it from car to home?? Here in England I now get all my shopping delivered. I also have hypermobility, eg i have repeatedly dislocated my ankle & subluxated my wrists. But I didn’t realise until my last Dr’s appointment that my tendons were moving out of their sheaths, not sure if you describe it as dislocating, but the pain is very sharp, like nerve pain. I have sciatica on opposite side of bursitis, & a benign tumour on my spine. All these things are affecting my life more than the PMR…but I know I have something else because of the dreadful fatigue. I guess you no longer have the fatigue issue. Also, I get bad head sweats atm, a feature of my PMR. I’d watch for other symptoms, maybe the non obvious one, to check you don’t have it in addition! Oh, just for c oketeness, I also have fibromyalgia.
I am sorry to hear of your multiple conditions which must be a night mare to manage. I have never had the fatigue everyone talks about at all just the pain, lead legs and sweats ( but they could be caused by the steroids maybe as they have lessened as I have reduced pills). WE have made a family decision to retire at the end of this season as I will be 60 and I think the job is just too punishing on my body. I have managed to obtain other work online which as long as I remember to get up & move every 20 minutes is less punishing. That with the correct exercise will hopefully help.
it’s life, & it’s rich tapestry! Wow, that’s strange, for sure, not to have what a lot of folk would say are their main symptoms, I think! I had to change my job as I was a marketing director covering all of Europe, the travel & the hours were just too much! Like you I found work in front of a computer screen instead…& then took early retirement! I hope it all goes well for you, S x
That's very interesting. I wish you well with your very personalised programme, which I fear would not be available in the UK. I was going to say I hope you can change your job which sounds really hard on the body, so great that you are doing so.
I am at the low end of hypermobile and find that everything is connected. When I get treatment for one thing out of alignment, it affects another, especially, SI joints, hips, knees, feet. And similarly with neck and shoulders. Just now, treatment for R SI joint put L SI joint out - and so it goes on. As I said to DL recently, I have a physio on speed dial. I cope reasonably well, but could not do a physically demanding job.
Thank you for your reply. I seem to have a problem with ligaments and tendons more than joints which I suppose is why it was originally a PMR diagnosis. They do have PRP in some NHS hospitals in the UK but not many. At the moment they wont allow physio as the lead on my case says it can actually overstimulate inflammation and move it. Everything is all so linked isnt it.
Yes, it is my connecting tissues, not joints, which overall is a good thing because you can work with them. Muscle building is good and has helped with several issues for me. I am weak and bendy.
Incidentally, the niggles started for me with menopause. (I have GCA, hopefully had.)
According to this link: sutherlandhouse.life/hyperm...
"The connective tissues of hypermobile people are weaker compared with non-hypermobile individuals and therefore their muscle needs to be twice as strong to stabilise their joints and to be able to function normally, otherwise they would use twice as much energy on simple tasks, which will lead to fatigue and pain."
PMR is notoriously difficult to diagnose. That's why it should never be diagnosed unless the alternatives have been ruled out.
I know that now but sadly one of those things where you don't know what you don't know . I had never heard of PMR and its only after 4 years of not being able to get below a 12.5 taper that a sought other opinions.
Its really interesting for me thank you
It's also really interesting for others trying to find a diagnosis, so thank you for posting. Understanding the diseases that can be confused with PMR/GCA is as important as understanding the disease itself.
Joint hypermobility syndrome itself does not respond to steroids. However, the over-worked muscles and tendons become inflamed, and it is this symptom that steroids and NSAIDs (non-steroidal anti-inflammatory drugs) address. If the overworking is addressed instead, the inflammation, pain and fatigue is reduced without nasty side effects (see link below).
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