Lupus and Arthritis

[smellie]

Hi everyone, I'm having a lot of pain in my hips and quite severe I left one,usually at night, especially if I lay on it. Also sharp very bad pain in groin which happens if I move in a certain way. My left hip has limited movement I notice. I went to rheumy last week and he said it doesn't sound like it's related to UCTD. ( On my notes they put Lupus in brackets after UCTD but won't tell me why,just keep getting told it's not Lupus yet) He said it's probably Oestioarthitis. but when I read about Lupus it say Arthritis is linked with it. I also get pain in my knees. I find I can't walk for nearly as long as I used to before I get stuff sore hips and my knees and feet hurt. I do jive dancing once a week and after that I'm normally awake most of the night with really bad hip pain. Can any of you relate to this and tell me if you think the arthritis is linked to UTCD or Lupus. And also is it likely to be Oestioarthitis or will it be rheumatoid arthritis? I'm also worried about how quickly it will progress. Will I still be dancing and working this time next year or does it progress quickly?

Mellie

[PMRpro]

The hip/groin pain may be bursitis. Trochanteric bursitis is felt on the outer aspect of the hip and is sore to lie on as you describe. Bursitis affecting the iliopsoas bursa can feel just like OA. You need x-rays to rule OA in or out. Bursitis is mostly diagnosed from symptoms and a physical examination. And personally - there are only a few rheumies I'd trust to get it right! Mine does luckily.

UCTD is used when you have a load of relevant symptoms but not enough of any particular CTD to say it is that. So you have a load of symptoms that make it a CTD and at present there is probably a majority of lupus symptoms in there but something is missing to fulfil the criteria for a definite dx of lupus.

[smellie in reply to PMRpro]

Thankyou do much for to our reply. It was very helpful. I don't have a lot of faith in the rheumatologists either. They seem to jump to conclusions rather quickly.bone told me I had hypermobility and I'm pretty sure I don't. Another put me on pills for Raynaud's and I didn't think I had it bad enough vto need them so stopped and no I'll effects. And this last one didn't really take much notice when I was describing the groin pain, didn't take notice of my swelling at base of spine and then wrote down I have chronic fatigue syndrome when I never said anything like that. I just said I can't walk for very long anymore without my hips,knees and feet hurting.

Thanks again. Mellie

[PMRpro in reply to smellie]

Which, had he ever had it, is not CFS! You can't do enough for your feet to get sore!

[smellie in reply to PMRpro]

Omg..what a twit is his 😒

[A-r-c-h-I-e in reply to smellie]

Try for an mri scan . I have just been diagnosed with canal spinal stenosis plus many other ailments and have similar symptoms to yours

[chrisj]

Hi - I'm having the same pain, mines my right hip/top of my femur and it hurts at night when I lay on my right side, it was extremely painful just last night. Its stiff when I get up and its worsened over the last few weeks. Also aching and discomfort in my right groin, my rheumatologist asked if it was be a problem. It is.

I was diagnosed with osteoarthritis years ago about 5 years before being diagnosed with mild Lupus in 2005. The rheumatologists I've seen over the years insist the arthritis has nothing to do with Lupus, that its a separate thing altogether. In fact lupus for me has been stable for some time. When I saw a rheumatologist last week she decided to stop the hydroxychloroquine altogether, said I didnt need it. I have to go back for blood tests in 2 months to see how things are.

I have widespread OA, spine, feet, hands especially thumb bases, knees and sciatica. I was told a lot of my back pain came from the damage to my lower spine where the sciatica is. Its been a slow degeneration and my hopes are that it doesnt get too much worse, I don't tolerate pain well at all. Walkings been a nightmare. Gentle exercise seems to be top of the list to help manage it.

I've had bursitis as well which is painful to the touch but this pain in my hip isn't so its more than likely OA...

[smellie in reply to chrisj]

Thank you for your reply and advice Chris. X

[smellie]

Thankyou Pippa. X

[Hidden]

Smellie I agree with PMRpro as far as the UCTD (I don’t know anything about the other, sorry). Mine is also classified as UCTD/latent Lupus. So I think what the deal is with me, that my test numbers come back low. So there is a Lupus suspicion? But not strong enough for them to classify it as Lupus yet. And I think with a UCTD it could stay at the level it is, or progress into whatever ‘pre’ disease they think we are looking at. I think Lady Gaga actually calls her’s ‘pre-Lupus’. I have a suspicious ‘bruise’ (is what I think of it as) on my back the size of my fist. Right over my shoulder blade and it probably bugs me the most. When it flairs up the pain gets unbearable and drains my emotions. Last time I was at the rheumatologist’s I showed her (I’ve had it about 6 months?) I thought she could tell me what it is. She gasped ‘I’ve never seen anything like that before!’ And has had me make an appointment with a dermatologist for a biopsy. (I think of it as a bruise, but it’s actually very dark brownish, almost black).

For awhile she was testing me for Ankylosing Spondylitis, but ruled that out. Who knows if the back biopsy won’t change their minds about my UCTD diagnosis? But, what I mean to say is that I think they have to be very careful giving out a Lupus diagnosis, as Lupus can imitate so many other things. They don’t want to miss finding your real trouble, or stressing you with the idea of having something you don’t actually have. This is my understanding, but I could be 100% incorrect.

[smellie]

That's really interesting,thankyou. I'm wondering if I actually need to take the 200g twice daily of hydroxychloquine they prescribed me about 7 yrs ago. One rheumy did suggest I half it the year before last but I was to scared to as it already had a fair bit of pain and was going away and had a few events coming up that I didn't want to feel ill for so I stayed on that dose. Now I'm wandering why they gave it to me if it's not Lupus yet. Are you on it?

Mellie x