I have read a lot about it not being common for the hips to be involved in lupus flare, Or for that matter chronic lupus pain. They state it's usually the smaller joints of the hands wrists ankles and feet. I go through long periods where I have pain and stiffness in my hips even when I don't have pain anywhere else in my body. I am on prednisone 5 mg a day, and plaquenil 500 mg a day. When I had my last bad flare, I had pretty profound weakness and pain in my hips, ankles, feet, upper arms, and shoulders (profound shoulder weakness) as well as pain in my hands and fingers. I was wondering if any of you Lupies out there have problems with your hips? I just would like to know how common it is. After having been in the medical profession for over 40 years, I know that physicians and researchers don't know everything, I like to get feedback from the patients themselves. Thanks in advance for your feedback. Nan
Hip pain in lupus. Yes or no?: I have read a lot... - LUPUS UK
Hip pain in lupus. Yes or no?
I get a lot of hip pain especially in my left one. I had a steroid injection into it but it didn't help. I also take 5 mg of prednisone and 400mg of hydroxychloroquine and quite often 15/50mg of co-codamol.
Hi yes I have hip pain/problems and have had to have injections lots of times. I think it's more trochanteric bursitis so they inject that rather than the hip joint. I get a lot of pain if I lay on the side especially when it's really bad. I'm on 5mg Pred maintenance azathioprine hydroxochloroquine and for pain relief just been changed from bupronorphine patches(as I had a localised reaction) to zomorph slow release tablets.
Hi there , i have sjogrens and probs with hip pain ,i have bursitis in left hip which ive had injected several times , and i have alot of pain in both hips getting out of chairs which feels like muscle rather than joint pain .
PS rheumy said inflammation more common in autoimmune disorders
Thank you for your reply weathervane.
Hi there, I have never heard of this. I get terrible pain in my hips and knees as well as my ankles, toes, wrists and fingers. Admittedly the pain has been a lot better since I have been on mycophenolate mofetil and 10mg of prednisilone.
My hips cause the most problems, though the joint swelling started in my hands and that's where I spot flares when they start.
Yes indeed...maybe my tale can be useful in some way:
After decades of early onset cervical spine & shoulders spondylosis pain, my lower body spine/hip pain began to be truly bad in my 40s... despite doing all the recommended stuff: pilates + tai chi + yoga for core stability & Alexander technique, extra vit D, antiinflammation diet, memory foam mattress, seat wedges & lumbar pads etc etc....the lower body pain just got worse....Meanwhile I was on daily prescrip NSAIDs & analgesics for spondylosis (cervical, lumbar & sacral spine) which did little more than make me feel like a zombie...eventually I began & having pain clinic bilateral facet joint denervation ops + IMS rehab.
X-rays & MRIs showed some osteoarthritis & slipped discs but hip joints were OK. only mild spina bifida occulta. neurosurgery booked me for a double cervical discectomy, but I cancelled at the last minute
Osteopaths & chiropractors told me I had global ligamentous laxity: like a rubbery doll...impossible to manipulate. Sports Massage therapists told me I was tight as a drum, soft tissues impossible to release. Only IMS (Intra Muscular Stimulation deep dry needling by certified practitioners) could even begin to release this tightness
During the years all this was getting worse, my infant onset lupus diagnosis was lost & the NHS hadn't figured out what was underlying all the chronic multisystem emergencies & conditions they'd been diagnosing & treating.
Alexander postural training helped me minimise the pain...and the denervation ops + IMS helped numb the pain to a degree. My upper spine & lumbar pain responded most positively, but my hip & sacrum pain resisted
Then finally a brill rheumatologist figured out my lupus & we discovered it was infant onset. All my joint pain, inc hips/sacrum, responded immediately to daily hydroxy + amitriptyline (smaller synovial joints were helped the most). Eventually we added pred + myco: WOW, my hip/sacrum pain let up just like that! Now I am stiff with muscle weakness and am v glad of my Alexander training....but hardly any hip/sacrum pain on this daily combined therapy treatment plan
The conclusion is that mine is a case of typically overlapping issues (EDS hypermobility disguising SLE & SS synovitis + soft tissue tightening & denaturing + enthesitis etc etc).
My impression is that if hip X-rays & MRIs are "normal", look for sacral synovitis & general enthesitis (no doubt you know that the only synovial spinal joints are in the sacrum & at the top cervical joint meeting the skull, but everywhere tendons meet bones there are entheses....and synovial joints & entheses are typically involved in SLE & SS inflammatory process)
Apologies for going on at such length, but this subject is ultra close to my ❤
Am wishing you every best wish nan
PS did you see this recent discussion re enthesis:
Hello. Yes, I can relate to your post. In fact I have talked about this issue a lot on here myself. Mine is quite complicated though, as I guess we all are with this auto immune thing to cope with. Sorry, if this is long winded.
My hip issues started in 2012, before my lupus diagnosis. However with hind sight I'd had lupus for about 4 years in 2012, maybe more. I was training for my 3rd half marathon - training 2 - 3 times a week and running up to 12 miles in one go, in prep for my Cardiff Half Marathon. It being my 3rd, I knew I could do it, but set myself the goal of running the whole way without stopping or walking. But my hip started to play up. It was painful when running. I didn't think much of it, as at 38 years of age and quite fit, I thought it couldn't be too serious. Plus I had sponsor money riding on it. I didn't want to let people down. Anyway, I did it, I ran the whole way, despite the increasing hip pain.
But afterwards the pain was bad and I didn't actually ever run again. I went to the GP they told me it was nothing. I went back. Got referred for x-rays. Told again, there is nothing wrong with you. X-rays are clear. But the pain was unbearable by now, walking and standing were a big problem. We had private health care, with my husband's job and I'd never used it before, I mentioned to the GP at this point, as I knew my own body and something wasn't right. She agreed to refer me to see someone privately. I had an MRI with dye injected into my hip socket and it showed a number of problems! So much for "go away there's nothing wrong with you!" (My first lesson, in my own health, if something feels wrong and you think there is something wrong, there usually is, we know our own bodies!).
I had lesions or bone spurs on the ball socket and with the impact of running they had rubbed and ripped the lining of my hip socket right through - that was the deep rooted hip pain with every step - the massive tear. I had a hip arthroscopy (key hole) to shave the bone spurs/lesion off, smooth it all and repair the tear in my lining. I had the other side MRI'ed too and I have the same issue there, but have avoided surgery so far, as I hope that now I am not running (ha ha with the lupus), I just walk and do Pilates, that the bone spurs wont rip the lining. Fingers crossed. The Orthopaedic Surgeon who did my investigations and operation, told me that I would need both hips replaced, before my time, as the wear and tear was significant. Osteoarthritis both sides. He was under the misunderstanding that I had been road running all my life and that explained my problems. But I hadn't been, my running career was just 6 years, as i took it up to lose weight after having my 2nd child. However, by the time I went for my op follow-up I had been diagnosed with SCLE and he said, oh well, that makes more sense. He said there was no direct link with osteoarthritis and lupus but "it certainly would not help".
I have since been told I have OA in my knees and OA in my back. But when the doctors look at my x-rays/MRIs, they always say but the stage of it doesn't explain your symptoms. They still write it off as my age. Well, I'm now 42 years old and I don't know anyone else my age with the amount of aches and pains that I have!
My rheumy diagnosed me with a form of tendonitis in my wrists back in 2014. I've also had bursitis in my left hip, requiring a steroid injection and I am currently waiting for another MRI to investigate the possibility of inflammation of the Sacroilliac Joint. So what with the bursitis and a form of tendonitis and the possible inflammation in my back, I think my aches and pains are lupus - not the OA as I was led to believe! Although no one will really commit to the link.
If you look at an educational poster for lupus, showing the human body and the parts of the body that are effected by lupus, the hips are always marked for "lupus arthritis" but I ahve never had any one make this link with me. In fact the rheumy only ever talks about RA with lupus.
Interestingly, when I had 2 x 5 weeks course of steroids last year - 20mg for 2 weeks and tapering for the remaining 3, I had no aches and pains - as well as my other symptoms disappearing and my energy levels were amazing!
I am now on 2 x 200mg hydroxy a day, 3g of MMF, an iron supplement. Also, I take glucosamine (recommended by the ortho) and cod liver oil - when I asked him about this, he said there is no evidence and I cannot recommend it like I can the glucosamine but it wont do you any harm.
Of course, there is also evidence now that OA is not just wear and tear, that there is an element of inflammation with it too.
I guess, us lupies often have numerous health issues and it certainly gets complicated and I guess sometimes impossible to completely separate the causes of all of our symptoms out.
I hope my rambling helps in some way. I'll follow your post with interest.
Hi nanleighh ,
I've looked this up in the Lupus Encyclopedia and it largely supports what you have found in your research;
"Another important clue to lupus being the cause of arthritis is which joints are painful. Lupus arthritis most commonly affects the knees, elbows, wrists, knuckles, and middle joints of the fingers. When a person who has SLE develops pain in the neck, shoulder muscles, back, and sides of the hips, then something other than SLE is usually the cause. Possible causes of pain in these areas include bursitis, tendonitis, degenerative arthritis, and especially fibromyalgia.
"Your rheumatologist is the best person to help sort out exactly what is causing your pain and to establish the best way to treat it."
Thank you Paul.
At my addenbrookes lupus clinic we're advised that lupus inflammatory process is attracted to any site of inflammation regardless of it's cause. So although lupus may not be the 'primary' causative factor, it joins the 'party' exacerbating the situation. Hence, to some extent, lupus meds can improve symptoms even in joints or soft tissues where lupus isn't the primary problem.
The proof is in the pudding: if meds like prescription NSAIDs & analgesics are indicated by investigations but don't help whereas pain & inflammation do inadvertently reduce in response to lupus meds, then lupus inflammatory action is most probably involved
That makes complete sense to me and explains that those 5 week courses of steroids had a very positive effect on me all round last year. X
It's not exactly "science", but in cases where EVERYTHING else has been conscientiously tried over considerable time periods this is hard to argue with. especially in long term cases that meet diagnostic criteria despite current seronegativity (i.e. In which tests could well have been pos earlier, had they been carried out) e.g. Mine
We've all heard medics argue that "everyone feels better on steroid courses". Well, in my case, sacrum/hip pain clears up on mycophenolate alone. I mainly need pred to manage chronic flaring Neuro-cerebral symptms and small vessel vasculitis.
I'm open to any strong arguments on this...but so far I haven't been persuaded otherwise. And articles like the one I posted recently by the autoimmunity of the Johns Hopkins Lupus Encyclopedia re lupus enthesitis seem highly relevant
Thank you Coco, I have been under the weather recently and that's why I couldn't reply sooner, I have been convinced that the inflammation in my hips or really bursa is related to SLE even though the literature says otherwise. I like to get a feel for what other people think as we are the ones dealing with the symptoms. I guess it is all trial and error with these treatments and everyone is different, however when so many people with SLE have hip or bursa issues I have to wonder about the relativity.
After many injections into my hip by my Rheumy, he decided to send me for an ultra sound guided injection. That doctor said my hip tendon was so inflamed it was rubbing onto the bone. I replied to him...no wonder it hurts !!! The guided injection was very painful. But so worth it. I can now lay on my side. My hip is still sore but not to the point of passing out like before.
Thank you Pinkandfluffy, that's sounds very painful. I hope you get relief from it.
HI nanleighh YES I FIND LUPUS DOES GIVE ME PAIN IN MY HIPS
Hi, usually the joint pain starts in my smaller joints from fingers to elbow to knees... and at one point when my arthritis got really bad I did have severe pain in my right hip joint. It is very painful
I don't get much pain during flares - mainly fatigue - however what I did get at the start of my last flare was pain in my thigh muscles, my pelvic bones felt bruised and sore to touch. Also I had sensitive skin all around my pelvis. Nothing anywhere else. My consultant did say he thought my flare might partly have been triggered by changes to HRT. Maybe there is a link there?
My hips have always been worse than other joints , second worse are my knees. My consultant said years ago that I have some fibromyalgia stmptoms as I can get painful sore spots in areas traditionally associated with fibromyalgia, and I've always thought this applied to my right hip as when there is pain in my hips it's usually in a very particular place at the side.
My right hip in particular is often very painful, and has always caused some problems particularly if I stand up or sit down for too long. I'm currently on hydroxychloroquine, with NSAID and paracetamol as pain meds, when pain gets worse I also take codeine
My right hip has been getting worse on and off since September, and this winter cold weather in particular seemed to make it worse ( normally it's damp rather than cold that makes my joints worse) So I'm about to see my Dr and see what they suggest. I hope they will investigate further eg scans, x-rays; and I think it may be worth seeing if my treatment plan and pain management need tweeking
Thank you for your reply fab, I hope you get to the bottom of your problems.
Hi nanleighh , I've been reading this post with interest as I have developed increasing lower back and hip pain over the past 1 - 2 years. Some of the hip pain I attribute to wear & tear but there is no doubt that the bulk of the pain (particularly lower back) appears during the early stages of my frequent flares - to the extent that I now use it as an indicator of impending inflammation. I also notice that knee flares will often cause inflammation that heads up the tendon into my hip. It's really miserable and makes me reluctant to move around. I haven't mentioned it to my Rheumy - I'm not sure that there is any point but I'd be interested to hear how people manage the pain if they don't have steroid injections. I need to avoid NSAIDS as much as possible but don't enjoy popping paracetamol every few hours.
Hi Careb67, I have recently started taking hemp oil as an experiment as I've read that it helps with inflammation. I bought it on Amazon and it's made in Canada. I thought it was worth a try, as I have anaphylaxis to all NSAIDS so aceteminophen is all I can take. So I have to say recently my hip pain has improved but I cautiously give it time to make sure it's not just coincidence. I can sympathize with you as low back and hip pain can be very draining. I am also trying to cut out as much dairy wheat and sugar from my diet as I know it is inflammatory. Changing diet is the hardest thing though, even when we know it's good for us. I wish you the best in finding the best regimen for yourself. ❤️Nan
Hi nanleighh, I have had lupus for over 30 years and am often bothered with hip pain(as well as other joints) so I don't think that it's unusual at all. Any joint in the body can be affected so I don't think you need to feel alone in this. I take immunosuppressants, warfarin, steroids and hydroxychloroquine as well as various painkillers. Hip pain is a very difficult pain to control though so I would just recommend gentle stretches to keep the joints supple+if that's too sore,heat patches or a hot water bottle. Hope you find some relief.
I actually had an MRI and found out the pain was coming from my L5 in my back. After for epidurals I have been pain free for three years now, hip wise. I hope you find relief. Take care.
Thank you nanleighh, I'm glad they found out what was causing it for you+managed to find a solution.
Mine really badly effects my legs. I have pain most days in my hips, knees, ankles and calf muscles.
Thank you for your reply.