Greetings all , 3 years since PMR diagnosis and Steroid. Meds I’m down to daily 2 mg , Bone scan has shown up early osteoporosis in my Back , Neck and Hips , I’m 64 ,
Taking Calcium and Vit D daily , I feel my balance isn’t reliable and pain in my shoulders and hips knees is fairly chronic , I’ve employed a stick for walking outdoors ,
My query today is about how Pain feels for others ?
I find it puzzling how I’ve felt a twinges travelling .. like on a circuit board ? This wave of pain goes to all my PMR sites - Also I have aching sciatica pain and throbbing pain in my Knees , Bursitis the Physio says .
I wonder if anyone has found Acupuncture disrupts these Pain transmitting routes ?
My Rheumatologist is very keen I reduce my Prednisolone further , he believes I could manage on Ibuprofen after weaning right off steroids . He thinks that with my bone scan showing bone thinning it’s essential to stop asap - I tried Methotrexate injections , they were not so good at Pain and stiffness management .
I feel anxious to go below 2 mg of Pred -
Thanks for any comments , 🙏
Michelle
Written by
RoomsonFire
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What do you mean by "early osteoporosis"? Osteopenia? Osteoporosis that wasn't there 2 years ago on a previous scan? What is your t-score? And have you been offered bisphosphonates at any time?
"he believes I could manage on Ibuprofen after weaning right off steroids" - he REALLY thinks that switching from a relatively safe dose of 2mg pred to ibuprofen that in the long term will mess up your cardiovascular system and kidneys is a good idea?
Even if your PMR is gone, there is no guarantee it will remain gone at 2mg lower pred - even 1/2mg of pred is enough to stop a full relapse and needing to start again. Not to mention that ibuprofen doesn't work in PMR and is firmly discouraged in the guidelines.
Yes osteopenia , pretty much spreading , in my wrists and hands I think too , no strength or grip - I’m reluctant to see the same Rhuematologist again , he tried to cheer me up , by saying I looked well 😂 I had put a bit of Lippy on my pancake white Face - I’ve got several months 1 mg Prednisolone, I might not see him for 6 months , I feel he’s unrealistic that i can reverse my Muscle weakness and Tendon wastage , But I’m going to Physio every 3 weeks , Thanks for your reply , Over the counter Pain relief didn’t help before I began Prednisolone at 15 mg in 2022 ,
Osteopenia does not cause any symptoms - not even pain unless you develop a fracture because of it. Are you sure you don't mean osteoarthritis is affecting your wrists and hands? Although - sounds more like PMR to me. At what dose did you start to feel this bad?
What you are describing sounds far more like incompletely managed PMR - and what you need is not to come OFF pred but better management which may mean a bit more. I think you should try to get to see a different rheumy who is rather more realistic and empathetic.
You are right , I felt a bit dismissed in my last Rheumatologist appointment, like he implied I was making things worse by choice , I had gone saying I thought I was having a Flare on 3 mg , I had just had a month of awful Hip pain , greater Trochanter bursitis the Physio diagnosed - Thank goodness for our online Connections , I would feel quite isolated without them 🥰
If your physio is suggesting greater trochanteric pain syndrome I'd be investigating better treatment for that - because actually that may be the cause of your pain and it can be improved by targeted treatment.
Hi Pro. Recently diagnosed with bursitis and given the intensity of the pain and where it is mainly, I would say greater trochanteric. BUT given that I had my second Zoledronic Acid infusion Dec 13th, I decided to contact my Osteoporosis Specialist, who immediately sent me for an xray of both femurs, left and right. Xray in the morning yesterday. Phone call at supper. Don't worry says she, because they're wrong....atypical femural fracture. So now I have to go for an actual bone scan not a BDX. She's been doing this for 40 years and of course, I believe her. Am I worried ? Um..yeah. So I was wondering about a CT or MRI to kind of rule IN bursitis. I've never thought I would want something to be bursitis.
And truthfully - who dx'd the bursitis? No doubt without an x-ray? If an osteoporitic patient presents with severe femoral region pain - a fracture really does have to be ruled out before assuming bursitis. In a way, it is a shame it didn't happen before that last infusion - they wouldn't have done it. But they also happen in patients not on bisphosphonates and they are VERY rare. Just really bad luck.
The radiologist report specified atypical fracture(s). Specialist was ruling out bone necrosis I think. I know so little about it. Proceeding status quo as much as possible. The bursitis (if it is) was dx on Dec. 24. A week and a half after the second infusion. I went in because I couldn't put weight on my left leg or very little. No xray. Just GP feeling the tender spots and a referral for a cortisone shot. There was no pain when I went for the infusion in the Dec 13. Yes extremely rare. An informative article. Thanks Pro.
I agree with everything PMRpro says but I am not so sure I agree with your doctor. It seems he may be another one who is not well up in his drug knowledge!
I have Trochanteric bursitis in left side & sciatica on my right side. My bursitis responds well to local steroid injections, but sadly they don’t last for too long. Sciatica is responsive to stretches,but I have hypermobility & stretches lead to dislocation of tendons & joints,which I’m finding worse than the sciatica! However both improve without medication as spring turns to summer…cold weather is dreadful for them! Sorry, not a hugely positive reply but not trying to be negative!!
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