HI, I an finally free from steroids for PMR. 3 weeks now,No withdrawal symptoms occasional palpitations in bed before i go to sleep. could be coincidence. I had a flare up when I got down to 1 mg. a while ago had to go up to 5mg to get relief, them start down again slower this time. took 3 years 3 months. The side effect of the steroids was Osteoporosis. diagnosed by the bone scan, which I wasn't sent to for nearly a year. also not given calcium adcal until scan. the next prob. was diabetes caused again from steroids, when i got on a lower dose and also cut down suger, went to normal, though gp. said I would be counted as diabetic for 2 years with clear blood sugar tests.
Well I fell broke my hip about a month after being told i had osteoporosis now on aladronic acid once week.. It is 2 years since I had the new hip. my leg and ankle is still swollen though I was told it would go down 3 mts after op.. I have no follow up. Not bothering G.P as i know there aren't funds for folow ups physio etc. so i am having lymphatic irrigation for the odema which I have to pay for as it is not on NHS unless for cancer patients.The other problem is I still get pain in my bum and groin. and when I sit for a meal or go on computer or been in the car, I have to use my arms to get up as the pain in knee and hip is excruciating for a few steps and embarrassing trying to stand and walk normally. I am very active do loads of gardening walking dogs and rarely sitting during the day.I get restless leg syndrome in the evening which goes as soon as I am on the bed. Does any one else have the hip bum knee pain after such a long time. or is this all down to 3 years of steroids for PMR.
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Polymiagle1943
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Well done on the pred and diabetes - long may both last!
But I do agree with DL - if your hip replacement isn't right, you need to get it checked out. Sometimes there are things wrong and leaving them just lets them get worse. It will affect how you walk - and that can then cause other problems. The bum/groin pain could be bursitis - and they could do something about that. But only if you tell them.
Hello, are you sure the swelling is lymphatic rather than from insufficiency of venous return or arterial flow? There are a number of reasons for your pain too and at the very least an x-ray of your prosthetic hip needs to be done. I’d regard seeing a doc not as a follow up but as trying to seek a cause to this problem which isn’t right and not just one of those things after an op.
I agree with others you should get the hip checked. I was reading about how hip parts can be problems for women as they don't make the parts taking into account the physiological differences of women and men. Women's hips move differently to mens so some parts can cause problems with the gait as there is no gender based testing of new hip bits or any other really. I am sure most are fine but you do need to check everything ok and identify what is causing these problems. Got to say that walk after sitting sounds suspiciously like my PMR walk.🌻
I wouldn't conclude your problems are side effects from Preds. I have a number of the same problems as you do, and I am at 8mg pred . And I have no intention of lowering dose now that fatigue is gone and well being returned. I have had no joint replacements. Am working in physiotherapy now: ultimate goal is getting up and down stairs normally. Working on stamina, strengthening muscles, balance and stairs comes next. I work hard in my house and do a little gardening , but heavy outdoor work is for paid men to do.
Also must be careful b/c have large paraesophegeal hiatal hernia which was likely caused by years of free weight lifting, and not with heavy weights. Surgery is not recommended b/c risk of complications are higher than benefit, but do not like looking pregnant at my age. Internal corsette gone;membrane broken. Absolutely no reflux or digestive problems so I have to think of free weight lifting as likely cause. Had no idea until a scan of my chest showed it ;most of my stomach is in my chest. But no pain or digestive problems.
You may want to follow Dorset Lady's advice and try a low dose of preds to see if any improvement, and check hip with surgeon if it still hurts. Did you feel rushed off Prednisone? Good luck!!
The groin pain does sound like it could be a hip problem. Is the lymphatic irrigation working? I have had two different people for it, very expensive and a waste of time in my case. You really need to go back to see the surgeon, I assume you will have to be referred again by your GP after this time or perhaps not?
Hi there, I am a retired physio, which might give me some credentials and I too am very concerned about your symptoms. Pain in bumb and knee can all be related to your hip, and with your osteoporosis you really should get your hip , but also your back checked out by your surgeon/ X-ray/ doctor.
The swelling is a sign that all is not well, the swelling is only a symptom, you must go to the bottom of this instead of treating the symptoms only.
I don't think it's your hip I broke my hip eight months ago and everything is fine it could be fluid which I had The doctor gave me water tablets and it cleared up in three or four days
I don't understand why you are messing around with this. It could be something serious. I have had a hip replacement and this is not normal. Please, see your doctor!
So sorry about what you are going through.😞 One can't blame everything on steroids; osteoporosis, maybe. Did you have it before steroids? Were you entitled to annual DEXA scans in your govt. health care system.?
In 2012, I was diagnosed with HYPER PARA THYROIDISM; that's PARA, not thyroid. I diagnosed it myself. At the time, I had severe osteoporosis. The only way to correct hyperparathyroidism is surgical. 4 tiny glands that have the job of controlling calcium metabolism, the most essential mineral for neuromuscular function, something I didn't know at the time. It is also rare. If one gland goes bad, the rest of them kind of hibernate and calcium gets dumped into the blood instead of where it needs to be.The only fix is surgical.
To make a long story short, the surgeons who located and removed the bad gland told me to have a DEXA scan 2 years post op; the surgery.reversed the severe osteoporosis; I had never been on steroids until PMR. 2016 So this was pre-steroid me.
Last DEXA- mild osteopenia. I do have to take Calcium Carbonate daily for the rest of my life. The parathyroids control calcium metabolism. I have been fortunate never to have broken a bone in my life.
I am sure you don't want to hear this, but with the hips at least , it could be a return of PMR symptoms, not necessarily steroid-caused. Were you not prescribed a medication for the osteoporosis? I am in the US; the drug that comes to mind is called Reclast here. But there are others. And now some bad results are being reported to our FDA on these drugs.
Weight bearing exercise can help with osteoporosis which is probably the last thing you want to do. Groin and butt pain could be from lumbar spine issues; sciatica? Or referred pain from the hips or spine.
I think you need to be re-evaluated in any event. Call your GP, your rheumatologist, the surgeons who operated on your hip; I know you need to go through GP first. But you are in distress! At least start the process.
I am on steroids still, and it will be 3 years in September; started at 16; got down to 4 and felt miserable. I went back up to 8, and doing much better physically and emotionally.
I don't have your symptoms, but I haven't broken a hip either. Don't worry about bothering your GP; he's getting paid to help his patients. Think about yourself first!
The more I read, the more I am not in favor of single-payer systems; they seem to cheat people out of care they need. As someone looking in from the US , I see it like this: you are a taxpayer, you are entitled to decent standard of care.
Good luck and best wishes. If I recall, you are a barrister?? You need to advocate for yourself and be proactive.
I do still have some hip pain, but that is from a severe scoliosis with nerve involvement. I have had that for many years; nothing to do with PMR. Now, I can't take the stairs except in baby steps. I also have a bad L knee. I walk slowly, not by choice. I am in physiotherapy through the end of September; that is my goal: steps. But I doubt I could do PT without the steroids.
Still wish you all the best, but don't worry about your GP or that the British govt. doesn't have enough money for physiotherapy. That's not your problem. Write a strong letter to your local representatives, and to your new PM if need be. You have nothing to lose. Where is the money in the UK going? To Prince Harry and Meghan Markle? William and Kate? And the maintenance of all the castles, and the entire royal family? I know they are much beloved by the people. But there should be limits. Sorry, I don't mean disrespect to the royal family, but that is not where the money should be going; not that our current American administration isn't full of corruption and headed by the Wizard of Oz. I have become politically active of late. Or we will wind up with a dictator!
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