Following on from another member's issues with groin and hip discomfort - here is my situation - very similar
I have just had results for another hip xray and nothing more showing than over a year ago but the pain in my groin and top of my leg have increased so much in the last 3-6 months.
I have been on pred 12 months now and I have managed to taper from 15mg per day to 3.5. I do struggle with this a bit mostly in my feet and that absolutely crucifying pain I get in the groin and the top of the leg so maybe just upping the pred a bit might see it improve.
I had a prescription review yesterday and they have told me that no, they can't prescribe a stronger painkiller like Naproxen as they may increase the possibility of bleeds and to also stop the Ibuprofen which I am taking 6 a day. Pred sorry to say might be the answer. I hate it, my hair is thin and wispy, I have put on weight (yes I know you can change your diet but thats difficult for me being such a foodie).
So maybe the hip pain is part of PMR and not separate as I have always thought - and 2 more questions if you will allow me - how do you get diagnosed if it is bursitis? And I have had no blood tests in the year I have been on Pred - the blood tests I had were back in February 2022 and they excluded the things they were looking for so it was a process of elimination that the diagnosis was made - what blood tests should I be asking for? Never seen a Rheumy and only phone consultations re tapering. As suggested before I think I will go up to 4 or 5mgs for a few weeks. Like dorsetlady says, if its too low I am getting all of the side effects and non of the improvements!
Thanks in advance you beautiful people, I am on here every day and its been such a help to see your situations and advice.
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….very often associated to PMR [but as Hopingsail says a new post might get more replies -and certainly related posts]. ..which hopefully you can now see
And much as you hate Pred - as we’ve said before not being on enough to control your illness is a complete waste of time -you get the side effects but no benefit. ..and most side effects can be mitigated.
I hate to say anything to cause you more worry but I had this same problem last August , told in A&E xray clear but got an appointment for fracture clinic as nurse wanted me looked at , they did A ct scan and it proved to be A stress fracture in my hip , so please don’t ignore it and keep on pushing your GP for A second opinion, in my case it was A physiotherapist who referred me to A&E , good luck x
Thats very interesting having said that it comes and goes I get it for days on end and then a few days clear = which led me to think maybe it wasn't hip. Are you better now? What did you have to do - just rest?
Sounds very possibly bursitis - trochanteric bursitis as the thigh problem and iliopsoas for the groin pain. I had the mix with my PMR prior to starting pred and it slowly improved over a period of about 3 months after starting 15mg pred. In those days we were left at it for 6-8 weeks and then down to 12.5mg for at least a month.
I have had flares of the trochanteric bursitis since, my rheumy did steroid shots which were immediately helpful without increasing the oral pred. I have also had extracorporeal shock wave therapy which takes 3 or 4 treatments over a couple of months - offered in my local hospital in the rehab unit so partly covered by our version of the NHS (I'm in northern Italy). I know there are private clinics who offer it in the UK.
However, for the diagnosis you need an x-ray to rule out fractures which you have had - and the next part is a physical examination - yes, they have to see you f2f AND touch you.
Part of the problem when you have PMR is that it "feeds" the inflammation although you can have bursitis without PMR as an underlying contributor.
I appreciate that you don't like pred - no-one does. But realistically it is the only option in the UK for PMR, You need enough and for long enough since PMR is a chronic disorder and if you stop the pred, the inflammation just builds up to where you were to start. It isn;t as simple as pred bad, no pred good, since the inflammation itself is also doing damage and contributing to future evils including peripheral vascular disease and cancers. Constant pain is no fun but it also contributes to mental health problems. I know, I had 5 years of PMR with no pred at all. Pred was my saviour but the long period of poorly controlled inflammation has probably resulted in the long and complex journey I have had since the PMR isn't going away. Quality of life is a crucial aspect and without pred, I had none. Had I never been given pred, I doubt I'd be here now to tell the story.
Thank you very much for that - yes I hadn't honestly thought about the damage it will be doing left untreated. OK I am going to go up to 4.5 from today and see how it goes - I can feel it in various places but always after a flare of bad hip and groin pain, I am necessarily sedentary for a few days and that always helps but then its 2 good days, 4 bad ones, and its a yo-yo. I must be regimental about taking my pred too I have gone a few days with dropping down to 2.5 just to try and "push it down" but all its doing it bring it on even worse for the next 3 days/. I am FINALLY going to stop battling against the steroids and work with them. Thanks as always.
I agree prednisone is better than letting the disease continue to cause inflamation. I do have concerns about my bone health. Anyone take anything to strengthen bones along with the prednisone?
Many do - I on the other hand have only taken calcium and vit D for the last 14 years on pred and for the last few years not even the calcium, I make sure I have plenty in my diet as calcium supplements causes bladder problems.
Thanks so much for your reply. Because of a flair I had to go back up to 5mgs. I will reduce after I see relief for a few days. I saw my doctor today and we are trying low dose naltrexone. I am having it compounded now. Will let you know how I do on that.
I am on the Vit D supplements and the Alendronic 70mgs once a week, I never realised it had side effects, stupid really they all do! I wonder whether to stop taking that I am on 5mgs now noticing an improvement so will keep at 5mgs for the foreseeable
I had major hip pain like you, then developed PMR and GCA. Prior to that I had a hip XRay, nothing showing, then an MRI and saw an orthopaedic consultant who said it was 'just' inflammation. I was referred to physio, which helped a lot and was given crutches and sticks. They weren't much use as it was during lockdown and I hardly went out. On starting 40mg pred, 6 months later, things improved drastically. But it has taken another 18 months before I can walk for more than 10 minutes and move around confidently without worrying about a burst of pain just because I turned round, for example, or trod on an uneven surface unexpectedly. I still get the odd twinge, but I'm down to 5mg now so I'm hoping I won't get a relapse. I think you have to be patient, take things slowly and give your body time to heal. See if you can get an MRI to rule out other causes and a referral for physio once they know what it is. I say that because I initially self referred to physio at a local clinic where they assumed I had OA and gave me inappropriate exercises that made things much worse. Once diagnosed, the hospital physio was brilliant, and I only had to wait two weeks!
By the way, the other thing that has really helped has been using a footstool and on no account sit with your legs crossed!
Thats very helpful and interesting thank you. Exercises and stretching didn't do it for me either I am going to try and get in next week and get in front of someone for a change and take this thread it needs investigating. Its not helping my weight either of course, but I am still swimming, even though I do feel it thanks for your reply I will keep hold of it
I have trochanteric bursitis & am getting a steroid injection on Monday. The hip pain is very bad indeed. I also have bad groin pain, but I know mine is from tapering too quickly (rheumie told me to, in no uncertain terms). I’ve reduced from 3.5mg to 1mg in 5 weeks. I’m only khappy’ to deal with this pain & other issues (shoulders) which mean, for me, a full blown flare up, as I’m seeing my doctor on Monday. My rheumie does have reasons to want me off pred quickly (& told me to’tough it out’ if I get a flare up), but having done so Ivan inform you that my quality of life has plummeted, & it really is a dreadful idea! I’m mindful if adrenal crisis possibilities & have warned my husband to look out for issues. Only in the middle of what I’d term Zanussi ‘experiment’, but my advice to you is don’t do it! Accept pred, stop fighting it. Hope this helps. I had 2 hours sleep last night, at least I used to get 4-5 hours when on the correct dose of pred that my body needs!! PS the lady who posted about groin pain the other day is not on steroids at all. She does not want the side effects. But she’s pretty much bedridden (her words). Life is full of making many choices, to take steroids and to take the qty your body needs is a choice, pure & simple, really, I reckon!
Absolutely. thank you. Yes I would take the steroids for getting outside and being able to move around, I hate them, I hate my skin is thin - the hair is a worry and the weight but I could do something about that really. Thanks so much for that and I am sorry you have had such a terrible night I am hoping Monday brings you relief - do let us know how you get on xx
Thanks! I had a lot of lung problems about 5 years ago & was on steroids, hated them & put on weight each time. I refused to take them until the choice was steroids or hospital, then I took them. So when PMR was diagnosed & he said steroids, I said NO! Didn’t take long for me to realise no other option, & I can’t believe how many of the side effects I’ve had. I don’t know where predictive text got ‘Zanussi’ from in my comment, but think the drift of it came over OK! I also have fibromyalgia, essential tremor, sciatica, osteoarthritis, worsening a lot now I’m on a low dose, hypermobility, Raynauds syndrome, probably Ehlers Danlos syndrome & possible sero negative arthritis. It’s enough to keep me going right now!! S x
Oh bless your heart you have been and still are really going through it. I hate them too but the alternative - well, we have to take them, for any quality of life. I have gone up to 5mgs again and although I can still feel my feet and elbow hurting especially in the morning and of course the dreaded hip and upper leg, I have had a quite productive weekend for me. Lots of rest periods, reading, knitting and spinning. Good luck with everything going forward x
Thanks, & its good to hear your weekend is better. Well, there’s always a choice & it’s a personal one, whether to take steroids, or not. My poor doctor sees a lot of me, really, & if there was an alternative, I know he would have offered it! Yes, pacing yourself is the answer. I only spent 2 and a half hours painting our gazebo today, some years ago I would have spent six hours!! Take care & keeping going with the four letter word (rest!)
I still have my left groin and hip pain and X-rays have shown nothing. But I also had an ultrasound which showed I have a femoral hernia in my right groin which I had no idea about. It’s not painful but needs surgery. My pain in my right groin remains and is excruciating at times. I am awaiting another ultrasound so we shall see. Pain is so debilitating and sometimes I feel worn out. I hope you get sone relief soon. Take care.
Thats exactly how I am!! Right I need to ask about that I had stomach surgery many years ago and they found 8 hernias in my tummy I am obviously prone to them - very good point thanks! And I hope you get well soon with it all let us all know how it goes
I have constant groin, hip and down the outside of my leg excrutiating pain. Prednisone does not help this at all. Probably sciatica and the only relief is with a tylenol/ibuprofen combo.
I do have a phone consult with ortho surgeon on April 25th to discuss possible disc issues, and then "low and behold" I've managed to reach the Rheumy god and have a phone consult with her on May 2nd (I really did need an "in office" with her though as there is a need for her to actually put her hands on me.) Sarcasm can be my strong suite.
Yes I am with you there re the sciatica and I have osteo arthritis in my back and hips too - its always a job knowing if its PMR or wear and tear. But this sudden electric pain makes me cry out - wherever I am and its a new pain. they suggested a pain clinic, I suggested further investigation!
A Pain Clinic worth its salt will do the investigations themselves and will have access to other things too. They are often worth a whirl - mine is great and I was originally referred because the standard treatment resulted in an allergic-type reaction so that isn't an option.
Well whoop whoop I have managed to get a face to face on 4th May, with my (2nd) favourite doctor so I am happy with that. In the meantime, I have increased to 5mg every day, knocked the ibuprofen on the head and am taking Panadol twice a day, and with lots of rest in between its way better than a week ago. Those steroids are so necessary aren't they! Oh and the penny has dropped re diet, I have been a very good girl this weekend, the sun is shining, I see a summer of salads and disgustingly healthy spinach and all the lovely options instead of the beige stodge I have been blindly eating for all of my nearly 58 years.
Goes without saying, but huge thanks for all your support, as always, I would have no hope without this forum, its a life saver
I had the same experience as you with the hip and groin pain very severe after two years on prednisone for PMR. I increased prednisone to 20 mg but it did not help. Rheumatologist said I had bursitis and injected steroid into hip but it did not help. Had X-ray of spine and told only mild arthritis. Pain has increased and I have become incontinent. I take a boatload of pain pills daily just to shuffle with a walker. Monday is a MRI of my back which should tell them more what is going on. Then I see a pain specialist doctor in May. It is very hard to distinguish PMR pain from other arthritic pain. I hope you can get relief. Life isn’t easy with new and confusing things coming along. Best wishes to you.
Oh my days thats horrific I am so sorry for you = incontinence due to back pain is very serious - I wish you luck today with the scan, do let us know how you get on.
You're right, its hard to distinguish between what is PMR, what is "normal wear and tear" arthritis and all the other possibilities in between, and it seems to me that for you xrays will tell very little so I hope they can give you some way forward after the scan.
Did you think it was your hip to start with? I have had severe back problems on and off since a teenager and I was told by a chiropractor who I saw for 25 years that I had a disc worn away, a displaced pelvis and a curve in my spine, NHS just say wear and tear, so its difficult to get a handle on how bad - or not - it actually is. But long term pain is bad, and we have times when we just cannot get on top of it I wish you all the very best today and let us know
I had the MRI yesterday so eager for results tomorrow at the pain doctor. Thank you for your kind reply . Your words are comforting to know someone understands the pain I have. I too have had a herniated disk since I was 40 and now I am 76 and 1/2 years old. I also have scoliosis to some degree like you. I hope you are doing better and I wish pain relief for all of us who are suffering.
Bless you - yes I am hoping you get some positive results today and a plan to move forward - do keep in touch - I have managed to secure an appointment with my favourite GP on -4th May so I am going armed with some of your experiences - I think we have very similar issues - good luck and keep in touch xx
I had my first appointment with pain management and it was very informative and gives me some hope for pain relief. First I will try steroid injections into my spinal area to reduce inflammation and swelling. I have multiple bulging disks and spinal stenosis, arthritis in my back. The first injections are May 15,. Wish it were sooner but at least it is something. Further testing by X-ray while moving will tell if I need surgery sooner than later. I hope your May 4th appointment is helpful. Best wishes to you.
Well thats a really positive outcome, considering all those issues with your back, I really hope this turns things around for you. I have never heard about the moving xrays before - in a purely selfish way I am glad I know all this, as I have something to "suggest" looking into at my appointment. So steroid injections, Is that cortisone type? I had those many many years ago in both knees - it was coming from my back but they didn't investigate that at all and it was mid 1980's. They only worked for about 6 months as I recall then but it was nearly 40 years ago now.
Spinal Stenosis, I have thought the symptoms sounded like mine and suggested it and was told just arthritis.
Surgery will be determined by the result of the x-ray I am still to have where I bend my back during the x-ray. Never knew there was such a thing. They said if the vertrabrae are rubbing on my spinal cord surgery will be necessary to prevent more damage to the spinal cord. The injections they said are steroids. I elected to have sedation like you have for a colonoscopy. You wake up quickly. They said I will know within 48 hours after injection if I get pain relief. It is still nearly a month until the injections on May 15th. Wish it were sooner. I had the injections in my knees over ten years ago and they did not help at all. I ultimately had both knees replaced and they have been pain free for 13 years so far. I have knee pain now but they tell me it comes from my back/spinal nerves being pinched. I get steriod injections in my shoulder every 3 months. The joint is destroyed by arthritis. I was scheduled to have it replaced when this back/hip pain started so I cancelled. Just couldn't not deal with sutgery on my shoulder and being in a sling for 6 weeks and the hip/back pain at once.
Well thats a lot of surgery to endure - what a lottery it is how our bones and skeletons are made - how strong and enduring some can be and others wear up - myself included. I am not an athlete and have never been but of course I have been active for 58 years but even so, wear and tear on all these joints - its just a question of how well we wear I guess.
I wish you all the very best for what treatment you have and I am sure you will be feeling so much better in a few months - fingers crossed for the injections too.
To update you on my progress: I saw an endocrinologist for the first time yesterday and she said I am feeling so poorly because I have way too much steroid in my body. The spinal steroid injection May 15th was a large dose, then on June 7th I had a steroid injection into my shoulder. I also am taking 13 mg a day of prednisone for PMR. I am going to try to taper 1 mg every 3 weeks and see how it goes. I need to have spinal surgery for six bulging/herniated discs and plan to start Actemra after the surgery. She said I do have adrenal insufficiency from over two years on prednisone. Seeing neurosurgeon July 11th. I hope you are doing as well as can be expected. A fellow pain sufferer wishes you well. Take care.
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If Your on Prednisolone and you get Aches in your Groin and Hip when you twist, turn or go up and down stairs Demand an MRI scan on your hip
Bursitis and Groin Pain
Pains in right thigh and hip, i.e. not bilateral, as well as usual, although not too severe, PMR symptoms.
