I have Adult Onset Stills Disease diagnosed aged 17 now 60. Drug free since my mid twenties apart from pain relief. Osteoporosis ‘halted’ by diet and weight bearing exercises during 40s and 50s as nothing prescribed for prevention during steroid years.
In recent months I’ve experienced extreme pain around my right hip joint, sometimes aching in groin area and inner thigh. Difficult to include knee pain in assessment due to everyday pain already in place. Movement limited already from stiffness and pain but new pain feels different and behaves differently. Walking is ok, bending from waist less so; hoovering for example is agony in the hip area ( as if wrist pain wasn’t enough).
I have other new areas of pain and stiffness, neck and upper arms mainly. GP knows nothing of Stills so I’m asking if this sounds like early indications of hip issues. Thanks for any replies.
When my hips needed replacing, it happened quite quickly, pain became unbearable to sit, walk, drive, lay in bed etc. That was after 37 years of RA previously diagnosed as Still's Disease (dx. age 6).
A rheumatology nurse, previously a physio, recommended I ask for physio (which we knew wouldn't help) and then a referral to an orthopedic surgeon. When I saw the surgeon it was like a breath of fresh air, he said I needed both hips replacing whereas GP and Rheumatologist had tried to put me off. Hope you get some relief.
hi BoneyC., thanks for your reply. Interesting to hear that your diagnosis of Stills was changed to RA after so many years. I’ve not seen a consultant since my mid 20s and the thought of a different diagnosis never occurred to me……
Which year were you diagnosed, around 1979? Mine was 1971, so maybe they changed things. Today Still's Disease would be JIA, but really it's all the same, RA.
I had steroid injections 3 x a week for 2-3 years at the beginning and was prescribed Sandacol calcium effervescent tablets - I can still taste them, horrible things and so much water to drink! When they were stopped, I had a few decades with no osteoporosis protection but continued to have short doses of steroids. Luckily, I don't have osteoporosis but my bones are osteopenic. I take Calcichew and try to keep active and eat a good diet, but there's only so much anyone can do.
I still see a consultant, haven't for 3 years, but had phone calls.
1979 I think, my mum became my full time carer for 6 months until diagnosis and steroid treatment as I couldn’t even feed myself. No preventative prescription for my bones but a later BMD scan revealed that I was osteoporotic so I took action. Interesting that you say it’s all RA as that’s never occurred to me, I just accepted that it was similar hence my value of the knowledge here. I have other AI conditions - LS, IC and DC but otherwise manage quite well. The last few years have been harder and I feel the need for medication but am reluctant to start the long process if trying to see a GP. The drug I remember is INDOCID slow release capsules (among many others) that worked for me 40 odd years ago and I know things are very different now. I’ll self manage until it’s less bearable before I approach my GP. Are you taking a medication regularly?
Indocid R - I remember it well, took it for about 20 years with no stomach protector - thankfully never had any ulcers! Co-Proxamol was also one that suited me until it was withdrawn around 2007. I am currently taking Naproxen and Codeine, but only one 15mg codeine at night to knock me out so I don't lie awake in pain.
I have always taken meds since diagnosis in 1971, obviously stopped MTX for two pregnancies but always taken some sort of NSAIDS. I still have monthly bloods even after 40 years of MTX. I was neutropenic a couple of times and rheumatologist didn't want it to go undetected.
I have always seen a Rheumatologist as well, never been discharged and don't think I ever will.
sorry, I missed this reply somehow. I was never prescribed a stomach protection drug either but I remember the aspirin were coated. These days I alternate between paramol, pararacetomol and ibuprofen. If it’s not too bad volterol can sometimes be enough but when migraines join in it’s a choice between what to take for the best. Interestingly during my pregnancies I felt better. It’s difficult now I’m in my 60s to separate RA stiffness and pain with natural ageing signs or just another joint joining in 😉
it does sound as you say it other test should be done for you.I get a lot of hip pain and sometimes into my groin but gp diagnosed as sciatica which I don’t think is correct but if it gets worse I will go back.I have a friend who’s had a hip replacement and she was getting terrible pain in groin.She could still cycle and walk miles thou.She had her replacement within a couple of months? I think you should ask to see an orthopaedic plus a rheumatologist.Blood test will show if you have high infection
pain relief like codeine does help but in fear of future pain being worse I try not to indulge myself, I take one in the morning so I can move more easily another if it gets too much later on. Regarding pain levels; tolerance depends on other pain areas or issues like LS for example. I’m sure we all know there are days when one bad area can me tolerated but on another day several areas at once make it too much. How did your replacements work out?
I never looked back... without the replacement there is no doubt the alternative was a wheel chair..I had 2 young kids at the time..4 and 6...I was fortunate to get a titanium hip...Took about 4 - 6 weeks after surgery before I was out with kids enjoying life again...Pain free in the hip area at least...
I would ask for a referral to an orthopaedic surgeon who specialises in hips. You may have to go through the referral to physio, that doesn't improve mattters, referral to surgeon route, on the way, and sometimes that can be helpful in building up the muscles around the joint and giving you confidence to do the correct exercises for before and after a replacement. But in my experience many people go from coping well with quite severe arthritis in the hip to suddenly not coping with the lack of cartilage there.
thank you, at the moment it’s all quite new with this hip pain and completely different to my other joint pain. Nothing g sudden yet but I’ll be alert and follow your advice. I’m currently doing physio for a leg injury sustaining October 2020 but went untreated due to the pandemic ( it’s not related to Stills directly but muscle ruptures lower calf). Anyway some of the movement they wanted is already not possible due to my hip immobility and I do wonder if 18 months of limping has aggravated my hip. I hope to eventually lose the limp and that if this a contributing factor the hip may improve although it could be a case of damage done.
I had both hips replaced (5 months apart) at the age of 54 yrs. My surgeon was shocked when he got in there and sent bone and tissue off to pathology, who said that the severe OA was caused by inflammatory arthritis (I think probably PsA not RA, but am still waiting to see an out of area rheumatologist, as I was brushed off by local rheumatologist).
Anyway, my reason for posting is that I wanted to say that it does sound like the symptoms that led up to me getting them replaced. I was scared and waited too long, so couldn't walk more than 50 yards, and then only on two crutches!
The replacement is incredible and life changing in a very good way. The terrible pain from my hips has gone. I still have problems in many other places (the bones in my mid foot have started to erode due to synovitis, so walking is painful from my feet, my knees and lumbar are very stiff and worn, SI joint inflamed etc, also neck, jaw and so on). But please remember that hip replacements are the most successful operation of modern times, and I am proof (as are the millions of people who have them every year)! (disclaimer, all operations carry risks - but you can minimize some of those by following the surgeons advice on rehab etc).
Ask to be referred to an orthopaedic surgeon who specialises in hips. If possible ask around friends and acquaintances to get a recommendation, and then a recommendation for a specialist physio for hips post op.
I am near Oxford and would recommend Prof Glyn Jones to the sky and back, and he would recommend you to the best physio I have ever found, called Jess.
great advice thank you. Pleased to hear the operation worked well for you. I’m in Cambridgeshire so Oxford is not far, thanks for the recommendation. I feel I’m at the beginning of the hip journey but you’ve made me realise waiting had no benefits at all.
Please don’t wait for pain in hips to just get worse and then have to wait for months to have something done. I’ve had both hips replaced seven years apart. The first time when I went to my GP with groin pain, stiffness, pain on walking, getting up, sitting down ,not being able to put my socks on etc. etc I was referred and ‘done’ within four months. This last time I had to wait 18 months and was way down any list. The pain was excruciating and I resorted to a stick so I limped badly for the whole time. In the end I paid privately as I would have ended up in a wheelchair.
If you have groin pain and other symptoms I’d urge you to push to see an orthopaedic surgeon and get a proper diagnosis. At present there is a definite reluctance to get you to this stage because it just increases the waiting lists. You have to go through the GP, physio route which doesn’t help at all and is just a delaying tactic. If you can, download the Oxford Hip Score chart (Google it), do it online and see where you come out on it - that’ll give a very good idea whether you have hip problems which need a hip replacement.
Good luck, don’t delay. The operation is so life transforming and normality returns as soon as you’ve healed.
thank you for your wise words and the general consensus is no point in waiting so after reading your story too I’m going to do something. I’ll download the test too. I’m glad the operation transformed things for you. Thank you so much for your reply.
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