Reduced my Pred by the slow method to 8 mg mid-May. Everything seemed ok for a few weeks until 10 days ago when pain started in my right hip.
I think I have always been a bit A-typical in as much as everything is always worse on the right side but this pain is different and totally right sided and is in one area.
The pain is in the right buttock, around the hip, sometimes in the groin and down the thigh to the knee. It feels different from before as the thigh muscle feels weak and I feel I need support on the right side especially going upstairs. Haven't experienced this weak feeling before. Normally my PMR symptoms improve as the day goes on but that doesn't seem to be happening with this new pain. I think the Paracetomol is helping but doesn't take the pain away.
Couldn't get my GP appointment for 3 weeks (one week gone by - so 2 weeks now).
Another GP in the practice arranged blood test last week which was 'normal' but she seemed reluctant to give advice on my medication as I am not her patient. She advised I requested a 'call-back' from my GP and talk to her on the telephone.
I did this on Friday and unfortunately missed her call - I will try again tomorrow.
Meanwhile I am wondering if it might be one of the 'other' conditions I have read about on this site - trochanteric bursitis or myofascial pain syndrome and, if so, is the treatment the same - to increase the Pred again ??
I am 71 now and had hip replacements 14 years ago.
Apologies for long post and thankyou.
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Wenben
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I agree with your suspicions - and no, the answer is not to increase the oral pred. Both are better approached with local steroid shots and manual mobilisation for MPS.
However, 14 years post hip replacement getting that investigated would also be a good idea - they don't last for ever.
Thankyou PMRpro - yes it is the fact that it may be the hip joint which worries me.
Obviously I don't know what the doctor is going to say yet but if she suggests steroid injections, how does that affect you alongside taking oral steroids?
So far I have managed my PMR with the GP but did see a rheumatologist (privately to avoid a long wait) once last August after 9 months of not knowing what was wrong.
In her letter back to GP she advised starting PMR treatment with 120 mg steroid injection in shoulder which was bad back then.
Neither myself or GP quite understood this so she gave me the choice of taking that advice or starting with 15 mg tablets. I didn't have the injection and started the tablets which worked very quickly.
I had had a mild reaction to a previous steroid injection into the shoulder at the beginning and as the GP said - once 120 mg has gone in, it can't be taken out. So this is why I am wondering what to expect when you have steroid injections whilst already taking tablets. Thanks again.
Wenben, it sounds very similar to the sciatic pain I have experienced over the years. A couple of people I know have had great success fairly recently with Bowen therapy for their sciatica - perhaps worth a shot for you?
Hi Celtic thanks for your reply. Back in March I was lucky enough to find 2 Bowen therapists within a few miles of the small town where I live and chose to have three sessions with a female therapist.
Nothing obvious or immediate happened and I'm not sure whether it helped although I am inclined to think it might have if I had persevered for longer. My problem was that I felt so uncomfortable during the therapy which is completely opposite to what most people say.
Lying on my front and lying on my side on the therapy table was uncomfortable to neck and shoulders (although I lie on my side in bed). She was very good and we tried with and without a cushion. I was OK on my back and some of it was on one of those funny knealing chairs which was OK but I didn't get that relaxing feeling that most people speak of.
I haven't ruled out maybe trying again with the other therapist to see if I get a different experience.
Wenben, they do say that if 3 sessions with a Bowen therapist doesn't provide relief, then there is no point in continuing. I must admit that if anyone asked me to lie on my front, they would be asking the impossible - I have spondylolisthesis (a slippage forward of my lower spine) and it is best supported by lying only on my side or back with my knees bent, sort of smoothing out the hollow. It is this injury which makes me susceptible to bouts of sciatica - possibly you may have done something to strain a muscle which could be impacting on a nerve? Worth giving the other Bowen therapist a try, perhaps!
About 8 weeks ago, I developed severe pain all round left thigh and groin. Saw Physio who referred me to the Spinal unit and for MRI scan.
GP upped Tramadol and Gabapentin and signed off work.
Managed to see RheumyCon, and he has diagnosed damaged nerve in my back, possibly around L3.
Your description matches mine pretty much, have found that laying on bed and cuddling left knee does release some of the pain. Doing it on the bed is important, as this gently stretches the back but with soft support. The floor is not so good, as it doesn't let the spine curve outwards.
For you it would be the right knee. Hold for about 20 seconds then slowly let down again. Occasionally do the other knee, which stretches that side to help as well.
My doctors surgery have a block of morning appointments and afternoon appointments, and you have to phone up on the day at 8.0am and 2.0pm to get one. Sounds like your surgery is over their capable limit. Try A&E, your MP, another surgery.
Saw GP last Friday by which time the pain had eased considerably.
However the hip/thigh weakess remains. Have not experienced this before in the 18 months since PMR started (11 months since diagnosis) . Just came on 3/4 weeks ago.
It is making climbing the stairs and things like getting up off loo quite an effort. Can't comfortably walk very far at present.
GP doesn't think this latest episode is due to the actual hip joint or the PMR and has told me to continue to reduce from 8 to 7 mg Pred. I don't think it is joint either - feels muscular. Not sure about PMR so am going to reduce very slowly to 7.5 mg.
She has referred me for physio and so am waiting for appointment now.
I hope you are getting some relief from the pain. I think mine might be coming from my back as well.
So sorry that you're dealing with a new pain. For what it's worth, I developed the same symptoms as you have - right hip pain, severe enough that some days couldn't put that leg down. I have the same problem going upstairs too. My GP was concerned about AVN so ordered an MRI. It came back showing a large tear in the tendon of the gluteal muscle. I am still struggling with it and have started gentle physio. I was told my gluteal muscle was weak from the Prednisone thus allowing it to tear. I would ask about an MRI so you know what you're dealing with (my X-ray didn't show anything). My GP doesn't hold much hope for it healing until I get my Prednisone dose down, I'm on 20.
Nearly every post about pain problems has the patient on Prednisolone and at fairly high doses. GPs need to find a different tool to use instead of this. Yours is a common problem wenben, one drug causing damage when the dose is for another. I saw some posts on either the Fibro or pain, that mention using herbs and spices as an alternative. This is something I am going to look into, might be helpful for you too.
Try putting turmeric into the search and see what comes up.
Unfortunately I have GCA so Predisone is not an option for me, but a necessity if I want to preserve my eyesight. There are maybe some who can manage without it for their PMR, hats off to them!
There is a Facebook support page for people who want to treat their PMR without steroids that you might want to check out. I know they talk a lot about an anti- inflammatory diet, turmeric and other spices, and other treatments. These things are probably all positive and wouldn't hurt I wouldn't think but might take a while to get the inflammation down, when it needs to get down quickly and stay down hopefully.
If it's the one I joined, briefly, some of them are a rather rabid bunch and I was pretty much compelled to leave because I wanted hard and fast proof that those who claimed to be cured *solely* through herbs etc had been definitively diagnosed with PMR and the response wasn't to tell me the circumstances under which they had been diagnosed but to tell me that I should not be questioning them. The majority of people on the page, however, appeared to be people like me who were taking pred but wanted to find ways to be able to taper off and stay off it without relapsing.
Yes, that's the group I joined and quickly got off, but I guess helpful for those who want to try it Prednisone free as no other sites popped up. I found their responses and attitude quite cantankerous and inappropriate often. Maybe because they were in so much pain 😆 I was told I shouldn't be there because I was on Prednisone and I explained I was looking for tips, re diet and supplements that I could add to what I was doing.
I'm late posting this - I was on holiday at the time and am only just catching up. However, I'm posting for the benefit of anyone else who finds this thread.
Hayesider: Pain and pred go with the territory of PMR and GCA - there are no alternatives for management of either of them at present. Alternative approaches may help to reduce the dose of pred required but there is nothing that will work effectively other than pred and even it is not perfect. It is not a case of "GPs need to find a different tool". There simply isn't one.
I had 5 years of PMR without pred - not from choice, I assure you. Nothing would make me abandon the pred that gave me my life back when I did finally get it. Apart from any other consideration, longterm uncontrolled inflammation in the body does other damage - predisposing you to other problems, including some cancers.
And if you have GCA, pred is the only sure option to avoid the risk of sight loss - which is permanent once it happens. Whatever the problems caused by pred, I doubt there are many that are worse than being blind. Ask the people on here who have been unlucky enough to be diagnosed only after that has happened.
Hi Everyone. Any suggestions welcome cos. I think I just made a mistake. I was reducing prednisolone, after a relapse in April and probably did it a bit too quickly, from 15 to 11 in a month, but I had read in Kate Gilbert book that for my weight of 49kg. That maybe 10 rather than 15 would have been a better start. I was doing really well with the PMR at lower dose, but then I got what I now think is right sided buttock and sciatic pain ,most unusual for me. I panicked and went up to 15 pred. For a Week iwish ihad seen Animi and PMRpro before.
my shoulder girdle neck and arms are pain free for the first time in 6 months, but the back pain persists though less. Helped by painkillers. I am seeing a physio. do let me have any thoughts on rate at which I could get back to 10 pred. Also is this most likely a separate problem? I know we are just sharing the symptoms and cannot take responsibility but I do find this site so helpful. Sorry to be so long patsy69
I had this severe hip pain, troubled me when I walked and still interferes with sleep as I can't lie for any length of time on my side. However this past winter I took a very hot hot water bottle to bed, and after I had actually placed it under the painful hip, something I did for several consecutive nights, most of the pain went away. I have very little trouble walking now. I also sometimes lie with the hot water bottle next to other painful parts, like my lower back, or my shoulder. My theory is that pain had caused the muscles to spasm, which in turn makes the pain worse, etc, etc. The heat helped that tense muscle to relax. I had it as hot as I could stand without hurting myself. I also occasionally soak in a hot bath with epsom salts and a few drops of aromatherapy oil (I favour tea tree oil and lavender).
Ask your physiotherapist about dry needling. Mine has used that on the muscles on either side of my spine, along with other strategies, and it seems to have helped me straighten up a bit more, overcoming some of the scoliosis I'd been developing. She said I'd had "bad tone". When I was talking to her about it this morning, asking if she noted whether my back had changed for the better, she said it had, and when she first started treating me the muscles along the spine had been "as hard as bricks".
Just to let you know that I have done the physio exercises ,just gentle for 12 days and it does seem to be working though I still take some painkillers. at present I think it was not part of my PMR, so I reduced prednisolone from a brief 15 slowly to 12. still so much to learn patsy 69
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