I had a hip operation in April 2013. I had growths on my hip socket. The way it was explained to me was that my ball socket on my left hip was shaped like a rugby ball when it should look like a football. I was running at the time, half marathons. The last one I did was painful and I had to stop running from then on. The growths on my hip socket had actually ripped the lining of my hip, nearly right through. It was agony and by the time I had surgery, it was excrutiating to walk, let alone run.
The surgeon did a wonderful job and I made a great recovery. I have the same issue on my right hip and although I have been offered the same procedure, I have declined so far, as I am mainly symptoms free on that side.
The surgeon told me that I had advanced osteoarthritis for my age and that I would definitely need both hips replaced in due course. He advised me to stop running and swim instead and also to take chrondriotin sulphate. I asked about cod liver oil and he said it would do me no harm but he wasn't allowed to officially recommended it.
Anyway, he couldn't work out why I had these problems with my hips at 38 years of age. He thought I'd been running all my life - no! Only since pilling on the pounds after having my 2nd child - so about 7 years??
When I went back for my follow up, I had then been diagnosed with lupus. He said although there was no direct link, having lupus would not help my hips.
Since then I'd been told I have OA in my knees and to a lesser degree in my back.
But as with all lupies I get daily aches and pains. Hips. Knees. My knees give way at times. Back. Shoulders. Tendon issues. My ankles have started to give way.
My lupus doctor in London has mentioned PsA and he has said he wanted to do further tests on me.
Then my new local Rheumy mentioned PsA to me at my first appointment with her.
I have had eczema since a baby, along with heyfever and migraine - so atopic issues.
I have been to the doctor so many times for skin issues, I cannot remember if psoriasis has ever been diagnosed.
However, when I look at pictures of it online and I have a friend with it, my skin issues have never looked like that.
I understand that you can have PsA without having skin issues though.
Plus, I have now read that PsA can cause bone spurs and issues with cartillage loss.
So, has anyone out there got lupus and PsA?
How was it diagnosed?
Despite all of these issues, I have never been referred to an NHS Consultant Orthopeadic Surgeon. My op was done privately, after having an X-ray done and being told that no further action was required. Private MRI showed my hip lesions and the tear in my hip lining.
From what I can see, the treatment is the same anyway - immune suppressants and I've been on 3g MMF a day since July 2016.
Just really curious about this now.
Thanks in advance.
Wendy
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Wendy39
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Yes, I believe it does, but it still fits with some of my symptoms.
Would an MRI show the difference between OA and PsA? That's the sort of thing I am unsure of.
I have some toe nail issues right now. And I understand that may fit with PsA too.
I should have said that above as well.
People with PsA have a higher incidence of fungal nail issues? But also PsA itself can cause nail issues. So nail changes can be a sign? Is the nail tested for a definitive diagnosis?
Definitely something I need to talk to my doctor about.
My ankles have given way twice now and once I was on the stairs and toppled forward, but saved myself, very scary.
Having two doctors mention it to you, does make me think they must be seriously considering it.
From what I have read about nail involvement, nail discolouration and nails lifting can be an issue and fungal infections are more prevalent with PsA too. I have battled this for many many years - since before I had my daughter and lost a whole nail once, but it did grow back eventually. Now looks like I might lose another.
It just seems that it might fit with me, but was wondering how doctors went about such a diagnosis.
If I think of any more questions, I'll message you.
I struck gold with him! When I phoned the clinic initially, I had a couple of others in mind but they had long waiting lists and the secretary suggested I see him instead. I am so lucky that she did. There is a Hughes International Charity event in London in September, called The Big Three, Hughes, Lupus and Sjogrens. Professor Hughes is there, Dr Kaul for lupus I am guessing and Dr Price for sjogrens? Dr Kaul seems to be getting more and more recognition for his lupus expertise. x
I know a couple of people from my group who see her and of course Twitchy does here too. She is so respected. I would really like to go to the event and hear them talk. The top 3 doctors for us, in our field. x
If it wasn't for him, I feel I may have had a nervous breakdown. x
Hi Wendy. My arthritis is really not in the league that you describe and so I’ve never made connection with my awful nails really.
But my first cousin was originally diagnosed with RA and now PsA without Psoriasis and the change of diagnosis came from her mentioning to her rheum that she had a first cousin with severe psoriasis -me?! Actually it was atopic eczema as far as I’m aware so this seems quite amusing to me but - like you- she had various operations on large joints as a young woman and we all thought this strange at the time as arthritis was associated with ageing to us back then. We assumed it was because she was very athletic and rode daily and had somehow knackered her arm hip and knee joints with her horse riding obsession.
She is very dyslexic so doesn’t like writing much and we haven’t much in common so I’m rarely in contact with her these days but she’s on my FB page so I sometimes read posts about drug reactions and her arthritis meds etc. She lives in North Yorkshire and can’t ride often now.
There are lots of people with PsA on the NRAS HU though. Xx
Interesting - I have very painful finger tips and awful nail splitting with tiny splinter haemorrhages often - strange bluish nails with pink halos. As my nails have always had Beaus lines and bony lumps on distal joints I assume in my case it’s mix of Sjögren’s, long history of eczema and neuropathy plus mild Raynauds chilblains and of course OA and RA type twisting/ drift, locking, pain.
Many with SS post about this too. It’s always concluded that it’s part of the Sjögren’s rather than other extra stuff as SS dries out the cartilage and cushioning protecting our joints and discs too. BSSA helpline confirmed so many have this so it fits.
The vascular doc agreed the blue nails and halos are strange but says likely ageing and OA explain their appearance. Perhaps I’m in denial but typing now hurts my finger tips a lot and the increasingly altered sensation in them means I have to retype everything. Each finger tip and thumb is equally badly affected, pink and shiny - thick skin and very hard and rough down sides - which I don’t think OA or ageing would entirely explain! X
More than with Sjögren’s I think Lou - and many aggressive and effective treatment options for it as well! Xx
It’s funny the business of being left untreated isn’t it? For me personally I tend to think of myself as untreatable rather than untreated as others such as yourself describe these spells in no mans land.
Today I found an RA journal folder from 2011 and a few entries pre Sjögren’s diagnosis from 2016 - which hubby had brought home from our studio yesterday. It contains photos and daily brief entries of how I was feeling with dates and diagrams for where pain was attacking me most each week or month.
I describe the pre diagnosis stage, brief Sulfasalazine, MTX and Hydroxy stage and all the focus of course is on whether I can move my wrists or fingers or knees or feet - pics of classic RA/ IA synovial swelling etc.
And then it moves on to photos of drug induced rashes galore.
Nowhere do I speak of just feeling downright ill though apart from MTX nausea - it’s all just pain and swelling and mobility and drug reactions. I seem, with hindsight, to be almost revelling in an adrenalin rush that keeps me busy in order to overcome the pain and be the hero of my own private civil war?! I’m taking the boys to their orchestra rehearsals and asking them to turn the ignition on and off as my wrists are playing fractured. Nowadays it would be a case of are my wrists and knees strong enough to cope with a ten minute drive up the road in their limply fatigued state. No pain - just limp yoghurt syndrome!
Nowadays it’s just a question of how do I stay vertical for enough time to get to the toilet and back or go for a dog walk or plaster myself in suncream and remember my laxative.
There’s no war with myself - just a feeling of having been defeated by a very different foe to the one I was busy crossing swords with? Although they are common bedfellows - RA and Sjögren’s feel to me to be worlds apart! Xx
Yes I do feel totally worn down Lou. I’m always feeling as if I have flu - but I think I did have a real virus on top of the SS etc but it won’t go. Horribly blocked nose, thick head and productive cough. Also back on the chemo cream so lip is red and swelling again - not in good place!! 🙄🤗
Got more sleep, decided to recline outside with full sun protection and found enough equilibrium to post!! Thanks for kindness Lou - much appreciated as always. Xx
My journey seems a little like yours. To cut a long story short, after years of health issues it all finally came to a head in my early to mid 40’s. Without going into too much detail, I developed calcific tendinitis starting in my wrist initially and then migrating to other tendons mostly in my upper limbs and shoulders. To complicate issues further I have had a fluctuating positive ANA for many years. Several years after the tendon issues I also got a rash which was biopsied and diagnosed as a lupus rash. I was started on plaquenil which did help but the tendon etc issues continued and worsened. I started developing painful spurs, hip bursitis, coccyx pain, lower back swelling and pain. Eventually a rheumatologist ordered an MRI which showed conclusively that I had SI joint involvement and a diagnosis of spondyloarthritis (likely Psoriatic arthritis, although I don’t have visible psoriasis) was made. I’m in Australia, and I now qualified for Government subsidised biological injections. With the injections and plaquenil I now have a better quality of life. I still have pain, “flares”, permanent spurs, tiredness etc but with intervention of exercise physiology, physiotherapy and treatment by a good chiropractor I have been able to exercise, which also helps. I also have osteoarthritis but as has been already mentioned pSa is an inflammatory arthritis, like RA.
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