When I started taking Pred for my PMR, it was such a miraculous relief to, finally, be pain free after two years of begging to be diagnosed with PMR...
It turned out to be a double edged sword, and a short lived joy... about a month after starting to take the pred I developed a pain in my left groin, which over the course of a few weeks progressed to agony, and an inability to walk unaided...
Again, I was back and forth to see the doctors (hardly ever the same one each visit), who kept increasing the morphine and adding more and more, and stronger and stronger, painkillers.. nothing helped..
I took myself out of the Poole system, and visited a muscular skeletal consultant today, in Swanage, who has confirmed that the Pred has caused Avascular Necrosis of the hip, and I am suffering a collapse of the hip, hence the excruciating pain...
I am walking (I lie, I am a bumbling fool with no balance) with crutches... it is so difficult!
if I knew what I know now, would I have started to take the Pred? What a tough question... I was in so much pain in my shoulders and arms that I was barely able to use my arms... but now, I am unable to walk, and in an agony that never stops....
PMR is a life stealer...
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caterpillar
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I find your story really shocking caterpillar, especially the fact that they seemed to take so long to realise that something very serious was going on and you had to endure the agony and the heavy duty painkillers.
I had no idea that Pred in PMR doses could do this kind of damage in one month. I was hardly able to walk prior to my PMR diagnosis, I remember being embarrassed to shuffle across the doctor’s waiting room. Pred worked like a miracle.
I think you have been extremely unlucky, do let us know what happens to you.
I believe I have been very unlucky, also.... and as I said, the pain of the PMR in my shoulders was so debilitating, that had I known of this possible side affect, I would, probably, have weighed up the possible, very narrow, chance of it happening, and the joy of being pain free in my shoulders and arms, and taken the Pred anyway....
That is really an awful side effect to happen. As it is a known side effect of pred a doctor should have picked it up much earlier. Were you on over 20mg of pred originally? Have they suggested a hip replacement?
yes, piglette, I was started on 30mg, which went up to 40mg within a few days, because, I am, also, unfortunately, a 50%er, so only absorb half of any medication.... a hip replacement will be the only solution, so, now waiting for an MRI, and surgery, from the NHS...
so sorry you are going through this. The bright side.. is that a hip replacement, while not a walk in the park.. is manageable and heals up nicely!!! and quickly. I had one and am just fine! don't do too much at first. I went to Europe from USA at 9 weeks to carry grandson around. ...tiny mistake! not the grandson ..the carrying so soon on. But I am fine. Do stomach (core) exercises to keep your back strong and any rehab suggested. and Good luck to you.
Oh my dear Caterpillar, this is such awful news, from relief to total agony in such a rapid time. Have the hospital made a treatment plan for you or offered you any way forward?
I am so sorry to hear about this & send you my very best wishes. 💐
I have taken myself out of the circle of ineptitude that is Poole hospital, and driven myself the hour long journey to Swanage Community hospital, and a Muscular Skeletal specialist, who has said he will co-ordinate my recovery...
it is really unacceptable that I have had to search so hard, and go to such lengths to find someone who is willing to help me... however, as I was told by a private GP, once you have seen a few doctors/consultants, if they are unable to diagnose correctly, then the following doctors etc will pigeon hole you into the round peg, that is not fitting the square hole, but they will continue to try to ram you into it, not looking around for where the real answer/solution is.....
it has been a lesson in patience and determination.... how much of it I already possessed and the deep well I have had to find to carry on.....
I imagine being in on this forum has given you knowledge and support into what is happening with your body. I have learned so much about the disease and medications through this forum. I wish you good luck.
I'm appalled that the doctors dished out heavy-duty painkillers without ever sending you for an x-ray. Like others I'm surprised it appeared so quickly after going on to pred and since it has other causes besides high dose steroid use I really would suspect that it was already starting before you were diagnosed. It can be present over a long period before the symptoms appear - so I wonder if the PMR was the sign you had large vessel vasculitis which reduced blood flow to the area.
Apparently, according to both the specialists I have seen this week, it can occur within a month of taking steroids... it is less likely to happen with direct injections... it is a rather rare side affect... they think the reason it has collapsed so rapidly, is because I continued to walk dogs (my business, I had built up over the last 13 years), and do the physio, (which I was referred to by my doctors,) all of which put extra weight/strain on the femur.. (I should have been on crutches, and putting no pressure/weight through my hip, from early on)
At least I am in good hands now... I have paid to see a hip professor, who is a pioneer in his field, and leads the way in research and robotics, he has sent all his notes to the muscular skeletal specialist, who is co-ordinating an MRI and, probably, an hip replacement on the NHS.... now, it is a game of learning how to use crutches, and waiting to see how quickly the NHS will react to a collapsed hip...
just as an aside comment... all this time, I was under a rheumatologist, who, when he looked at my x-rays, insisted it was degenerative arthritis, and insisted I should have a hip block, (even though my GP had diagnosed AVN, from the same x-rays).. when I tried to tell him repeatedly that it was suspected AVN he kept telling me that he didn't know what I was taking about, and no matter how many times I said it, it would not change the fact that he didn't understand what I was saying... I allowed him to give me the hip block, which was a waste of time, and it hurt)
I am not a shrinking violet, and yet I have found it very difficult to stand my ground, make myself heard, and assert myself in the face of these consultants, who tell me with authority what is best for me, even when I suspect it is not correct....
Hmmm - who is this paragon of orthopaedic knowledge in rheumatology? (No, no names, no pack drill in public.)
Have you reported him? I know my husband would tell you to. He is obviously in need of retraining - and I'd hate to know anyone else was subject to his ignorance.
It seems to be a rheumy "thing" - I had two who didn't want to listen. The current one seems OK thus far (despite looking all of 15! - even the GP agrees on that!). I have just had a slightly similar experience with him though: my atrial fibrillation was awful at 7mg, better at 8mg, gone with 9mg. No don't know anything about that in PMR/GCA/LVV. But I know others who have had the same...
I have been told by my friend (I was going to say friends, but since PMR and now AVN, the friends I had, which were many, have vastly reduced) that I should report him... unfortunately, he is, also, supposed to be the top dog of his game, and is treated like God, and I am, slightly intimidated by him ... silly, I know, but, something for me to self-examine once all of this hip stuff is over....
All the more reason to report him - because he blatantly obviously ISN'T what he's cracked up to be or he has become arrogant (which is even more likely). You could start with the hospital PALS but you could also go straight to his professional association. If a GP got it right...
Oh! How I can empathise. I have had PMR for 3 years and on Prednisolone. Gradually reducing below 10 and each time being diagnosed with a flare as pain increased. Last December I asked my GP to investigate why my pain was not bilateral. An X-ray showed severe deterioration in right hip, no cartilage and Spurs growing across divide. I was referred to MSK team, skipped Physio and progressed to assessment doctor who took 2 minutes to decide I needed full hip replacement in mid February 2018. Saw consultant surgeon in March and had my NHS funded operation on May 14th at a private hospital. Like you I am mastering crutches but much much less pain and knowing that it will get better.
I am in Portsmouth, UK area and whilst the weeks waiting were difficult and extremely painful and I resorted to a Red Cross borrowed wheelchair eventually, I think they sorted me quicker than most.
Fingers crossed you get equally good treatment.
If you read my recent post you will see it has not been plain sailing, but I am slowly on the mend.
My surgeon wanted me to reduce Pred to 5mg per day. I was on 10, so I made a plan to continually reduce from March to May in 0.5mg stages and suffered no change in PMR symptoms. Post op I stayed at 5 and have just started a slow reduction to 4.5mg.
I also tried a course of Mindfulness using a GP recommended book, Mindfullness for Health. It helped to control my reaction to pain and incapacity.
Hi, Picking up on your comment that there may be other causes. I was diagnosed with PMR 4 yrs ago by my GP. I then saw a Rheumatologist at Poole Hospital. He found widespread inflammation, and decided I had RA although no check was made for the RA factor.Then found the AVN and had ops..I moved to Edinburgh and after x-rays all over and blood tests, decided that I had Spondyloarthritis which means any joint can be attacked and blood vessels inflammed. She also commented that that the AVN was not nessarily caused by Steroids.I am now back in Bournemouth awaiting a knee replacenent!
I wonder if we have seen the same Rheumy? what surgery did you have for the suspected AVN? isn't it shocking the difference in treatment, investigations, depending on where you are in Post Code wise? wishing you a rapid recovery from your knee surgery...
I had Dr.Kurshid. After I begged for an x-ray, and when he saw the result, he immediately referred me to Orthopaedics for surgery, which I had three months later .
The .awful pain went away soon after op.
Edinburgh Rheumy was very thorough checking ..and ended up diagnosing Spondylo arthritis.
RA factor isn't much of a factor really (you can have sero-negative RA) but spondyloarthopathy can often be confused with PMR in the early stages and it is frequently missed. It is something that should be thought about in patients who don't respond well or struggle to reduce. And some of the pain is subtle in its differences - like the time of night/back pain for example. Which I imagine is why top rheumies insist even PMR should be seen at least once by a rheumy. But it isn't a lot of point when you end up with one of these sorts of rheumies.
SNAP. We were unlucky. I was told it was not common. I Ineeded a right hip replacement, and later a right shoulder reverse replacement. It seemed to advance very quickly. Really only diagnosed after I begged for x-rays. I have since had a left shoulder reverse replacement.,but not caused by avn. I am still on 3mg of pred and metotrexate .All the best my dear Joan
I took it for a few months and then stopped (without permission)because I read about AVN of the jaw and possible femor breaks. Now I see in the news that after 5 yrs. the bones appear thinner.
I was given Alendronic acid approximately a month ago, by my GP, taking it each week, it was maybe a bit like closing the stable door after the horse has bolted? Will carry on with it, and hope it helps in the future...
My Rheumatologist in Leeds arranged for a pelvic X-Ray because I was initially complained of groin pain. It was nowhere near the severity of your pain. This is how a responsible Rheumatologist behaves who knows the disease we have and the complications of treatment. (Sarah Mackey.)
Sorry to correct you - but in case other people are going to look Sarah up, it is 'Mackie'.
Hope you don't mind.........................
Mind re-reading a previous post of mine, the spelling is horrific and the typing is all over the place, never mind the grammar. Should not try and answer when I am trying to look after my 89 year old cousin who has dementia, but really that is no excuse.
Thanks for correcting me Jinsac can I site Pred head and a bad night last night. I have posted about her today elsewhere on the site and got it right. Sarah Mackie. I hope she’s better, does anyone know?
That is a horrendous journey you have been and still are on. We are looking to move to the Poole area soon and this is now making me wonder whether it is the right move. On the bright side at least you get to see beautiful swanage. Hope you feel better soon and don’t have to wait too long for your hip op. Bad enough being hit with PMR but to have the side effects of pred in such a short time, my heart goes out to you x
I was diagnosed with AVN after taking steroids for one month (not for PMR) and had a hip replacement. The AVN pain elsewhere increased despite increasing amounts of morphine and eventually I was diagnosed with PMR and put back on steroids! I managed to taper down the steroids quickly in order to have further AVN surgery (another hip replacement and a shoulder replacement) and am now trying to taper down the huge dose of morphine before the next shoulder replacement. When I try to reduce the steroids, the PMR flares up again, so I feel like I am caught in Catch 22...………
I started with hip pain in 2013. In 2014 I was diagnosed with pmr. I had an MRI on my hip and it had deteriorated quite fast. I started steroids in 20 14 and am still on them. At the end of 2016 my chiropractor was worried that I could be developing Avascular necrosis and told me to ask my rheumatologist to do another MRI. The rheumy was very abrupt and I think annoyed that a chiropractor was who suggested it and he let me have one. It showed Avascular necrosis and I was put on a list for a new hip. I was told I would probably be slow healing because of the steroids but the surgeon who did the operation was happy to let me stay on 20mg pred and said in a way it helped, not sure what he mean't by that. I healed well and everything was fine. Towards May and the start of June last year I was in agony so please get them to put you on the list for a new hip as soon as possible.
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