I was diagnosed in April 2019 with PMR, put on 20mg prednisone. I've done the usual up and down, now tapering to 7mg with the 'safety net' of Leflonamide. (My rheumatologist's phrase.)
Amongst the usual side effects, I have steroid-induced Type 2 diabetes, osteopenia and weight gain. And now.....my tendons are so damaged I have rotator cuff syndrome. My physio has given me a bunch of exercises, and says I'll recover eventually. But I am absolutely exhausted by this disease.
Has anyone else experienced this?
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HelenDaisy
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Poor you. Sounds like you have had a really tough time...with a whole cascade of problems on top of the PMR. Have you tried the low/zero carb diet to stop putting on weight. You need to be very tough with yourself but I found it works...no bread, pasta, rice absolutely NO sugar (no fruit juices and really only berries...no bananas!) Also for the osteopenia...take vitamin D3 and K2 supplement (usually in a capsule) take them when eating some calcium rich food. Also some evidence that boron is needed for optimal calcium absorption (you can get that in beans and green vegetables also a few prunes might help)
Thanks. Since 2000 I’ve also had breast cancer, 2 knee replacements, 2 shoulder decompressions, spinal decompression and parathyroidectomy. I still teach exercise classes which keep me sane and fit.
Oh my goodness...this is a terrible catalog of suffering...I have no idea how you manage to keep teaching exercise classes...moving is a real challenge for me...not pain but no muscle strength..my pred side effect has been myopathy...can you recommend any exercises? I am terrified of doing anything that will trigger more PMR.
It’s a way of life for me. I’ve taught exercise to music classes since 1983. And I now teach on zoom too. One of my classes is for older and less fit students, and includes balance and resistance work which builds muscles. It’s also fun!
We don’t record our classes, they are live, but at home, so you can do as much/little as you like. It’s ideal if you’re uncertain about exercising!You could have a free taster session of my Wednesday morning class if you would like. More details here:bookwhen.com/movesfitness-h...
such a generous offer....thank you...the truth is all my days are taken up by work...all online..so hours and hours at the computer...not the best way to stay fit,,,but I am so grateful to have the work. Either working or recuperating! I would like to think about it. But thank you so much...it so thoughtful.
While it is tempting to put all the blame on pred - leflunomide can also cause tendinitis. As can pred - so both together very possibly increases the risk as is the case with methyl prednisolone together with certain antibiotics which I have experienced.
Cutting carbs drastically can reduce the risk of steroid induced diabetes (it isn't the same as Type 2 diabetes,) and the weight gain - you can even lose weight, many of us have done so. If your Hba1c is high it can also bring it back to normal range.
Almost everyone of our age has osteopenia - it isn't necessarily entirely due to pred and isn;t a disease state. I had mild osteopenia when I started pred - and after 11 years on pred my bone density hadn't changed much and I still require no medication for it other than calcium and vit D - although I get my calcium from food, not supplements.
Thanks for your answer. I agree with you about blaming steroids for everything, I have a shocking medical history even before PMR hit me! That’s interesting about leflonamide. I already had osteopaenia due to longstanding hyperparathoid disease, with surgery in 2018.
Now I’m on a lower dose I am losing weight at last and I’ve taken advice from a nutritionist. Things were looking up before the diagnosis of rotator cuff problems. But on the whole I think I might be getting there.
Yes, I have had PMR since 2014 and am now on 7.5 mg. i have never managed to get below 6mg, where my fatigue is so bad I cannot function.
Last summer After an ultrasound on my left shoulder I was diagnosed with tendonitis and 2 very small tears on my rotator cuff. Also bursitis ! I have been doing exercises ever since. I also was advised to sleep with a small pillow/cushion under my left arm.
It improves sometimes then deteriorates again, but never so bad as it was at the beginning. Repetitive movements with that arm are not a good idea.
Good luck with yours !
I also now have osteoporosis and many other side effects.
Yes. Pred since Dec 2019 with usual starting dose of 15mg and a 6w period at 20mg. Just starting a 4.5 to 4mg slow 5w taper. Damaged a tendon or ligament around the knee about 12w ago and it’s not yet recovered. I’m booked for an MSK assessment in 3w time, but what can you do when you need the Pred? The only answer is to put up with it and taper slowly as your body will allow. Worst thing is to yo-yo!
What did they do with the knee? I find the UK is very dismissive of knee injury - totally different to here but then, everyone here expects to ski again!!!
I completely tore the medial collateral ligament about 7 years ago. It was decided not to operate but treat conservatively as studies have shonw that at 18 months there is little difference in result so I was given a brace that limited bending it to 30 degrees for the first couple of weeks, Then it was adjusted to allow 45 degree bending. It was completely stable after about 6 weeks - even the orthopod was suprised given I'd been on pred for a good 5 or 6 years then. I get the occasional twinge if I have the knee in an awkward position but otherwise no different from the other.
As yet I haven’t been assessed apart from a telecon with my GP who said “you may have twisted it” and she referred me to MSK for assessment... the assessment is towards the end of March.The discomfort is to the right side of the right knee. It occurred whilst kneeling with an acute angle with my foot almost touching my buttock, the pain was instantaneous and severe like toothache. It feels weak and I have to be careful not to aggravate it so hoping physio can teach me how to strengthen it.
If it's the ligaments it is a case of time really - hurts far more when it is just pulled - mine didn't hurt at all, it was totally torn. Once it was healed, the orthopod told me to just walk or cycle - it's strengthening the surrounding muscles that they look for. But when I have had pulled lligaments it has been some months before it stops hurting.
Weather permitting I’m waking as often as I can. I may have ruptured a few strands (ligaments bone to bone, or tendon muscle to bone) and I can’t see how they would repair without surgery - they’re mostly in tension, aren’t they. After 12 weeks I guess it’s too late to repair surgically and the best outcome is strengthening exercises. Scans at MSK will inform the decision makers.I don’t know if I should blame steroids entirely, it’s probably a mix of old age (I’ve just turned 70).
If they are restricted from movement they will heal - better it seems than with surgery and without the risks. Interlink your fingers and that is what they do, allow them to heal because they aren't allowed to slide back and forth and keep breaking the healing bits.
The orthopod I had told me his sister-in-law, married to another doctor, had had exactly the same injury as I did and her husband got a top knee surgeon to operate - top level treatment like the ski stars. It went wrong and she developed an infection. In the end she needed 3 operations - and took more than 18 months to get over it all. I was walking OK after a few months and back skiing the following season.
Knee injury is so painful. I’m glad you recovered. I have had 2 knee replacements and you don’t want those unless you are desperate! They gave me my life back though.
My hip flexor muscle in left hip has got very weak, could be due to Pred. It is agony getting up in the morning, I can't put any weight on left leg. It is also painful after sitting for a while. I am having to use a walking stick. Practice nurse thinks it is OA, I am getting it X-rayed next week . Currently on 7mg Pred, reducing .5mg a month.I am also my husband's carer, we have just moved to Scotland to be near our 2 daughters.
The bungalow we bought turned out to need a complete rewire, (done), a new bathroom with walk-in shower, (due to be started on June 12th), and a new kitchen, (at the design stage).
We are in temporary accommodation until 19th June, then moving into our new home, which currently has a sink and an oven.
I think we should have bought a retirement flat!!!
Didn't you get a full report before signing? My husband assured me once that the kitchen was fine, needed nothing done - I hadn't seen the house before buying, I was still in Germany until the end of the school year. When I did see it, we left the house, I turned to my mother and asked why she hadn't disillusioned him!!! She shrugged ... But I didnt mind, there was no need to justify ripping it apart and putting in what I wanted. Same sort of kitchen in the next house, this time in England. Both times I had 6 months of a makeshift kitchen in the dining room - not even a sink and the oven was my tiny Moulinex freestanding grill/rotisserie. A microwave and electric wok - amazing what you can create.
The home report just said "wiring not up to current standards" ! The kitchen was usable but when they did the rewiring they found the old type fuse box and the mains switch and meter were under 2 of the kitchen base units, so they had to take most of them out to get to the wiring, just left the sink unit and rewired the built under oven.We didn't see it before buying it, as the return journey would have been too much for hubby, so relied on our children to check it out.
Things are progressing slowly, moving in on 19th June, cat has to leave the cattery on 22nd as they are fully booked for summer.
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