Rheumatologist thinks psoriatic arthritis, getting MRI in few hours!

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compulsive_rambler
compulsive_rambler Member Posts: 7
edited 28. Nov 2023, 14:06 in Living with arthritis

Hello! Pleased to meet you all. I've had psoriasis since I was 7 and related eye conditions for some years, but when I got covid-19 last March, right before lockdown, my immune system went crazy after it seemed to beat it, I felt nothing like my old self and was unable to return to work full time my cognitive problems and fatigue were so bad, so having been put on a 33 week(!) NHS waiting list for rheumatology, I went private to get ultrasounds which found inflamed salivary glands, thyroid gland, and thickened synovium in one painful, puffy ankle. Also had bizarre unprovoked large bruises, and skin lesions I had never had before, in places that it makes no sense to have bruises. After six months my immune system attacked my eyes in an ocular emergency (crying and intermittently screaming, unable to do more than briefly flash eyelids open, ambulance ride at 3am type of ocular emergency), which was diagnosed acute anterior uveitis and keratitis in the same eye at same time, hence the rapid onset of extreme pain. Then very dry eyes that won't ease up. The uveitis has now gone chronic and moved into the other eye as well. Feels much better than when it was acute, but long-term that has serious risks. Before covid, I had only ever had severe blepharitis bouts that temporarily scarred the cornea, which had caused crying-uncontrollably pain a few times and could have involved undiagnosed keratitis as I was never referred to a full slit lamp examination on time, but not with an ache in and around the eye like the uveitis, so I know I had never had uveitis before. Never had muscle aches or joint pain except for sometime at night my sacroiliac joints, but for many years that showed no signs of getting worse, until that stupid virus and then they rapidly got much worse and I have random joint pains everywhere. If I had known that viruses are one of the environmental triggers that can push someone from psoriasis to psoriatic uveitis and psoriatic arthritis, I would have been wearing masks in London long before this pandemic, like the Japanese and other cultures that take autoimmune disease prevention seriously, let alone last March when it hit and I caught it early. But no doctor or campaign or school class ever bothered to warn me of what they casually write in one line in textbooks and expert disease profiles as if it's no big deal: that viruses are one of the triggers of additional autoimmune diseases in people who already have psoriasis. I'm struggling to come to terms with that negligence psychologically.

Finally the brain fog and fatigue eased enough recently for me to go back to work half time hours, so I can just about afford the private rheumatologist again, six months after the ultrasounds and a core needle biopsy of the salivary glands ruled out a million different other immune-related diseases that viruses can trigger. The salivary glands went from visibly swollen like mumps to just chronically inflamed on ultrasound, with no pain or other symptoms anymore, so like the weird skin effects, the thyroid and salivary glands and some other weirder signs like centre-forearm swelling, might be an unrelated, separate autoimmune aftereffect of the virus, separate to the multisystem disease causing the eyes, joints, fatigue, abdominal pains and symptoms I don't even have time to list all of.

I can only afford one of the MRIs the rheumatologist recommended, which I'm getting today, so the MRI of my sacroiliac joints will instead be done by the NHS, however many months that will take, as will the HLA-B27 test which hopefully won't be a long wait.

The rheumatologist seemed quietly confident that I have psoriatic arthritis, his words were "it would be nice to prove it", and I agree, I want to be sure it's not something similar, like SAPHO syndrome, on account of the additional signs and symptoms.

I'm a bit nervous because the ankle has been painful for less than a year, so even on MRI there is a chance that soft tissue inflammation won't be detectible. Then I would have to wait for the sacroiliac joint MRI, which I think is more likely to find something as they hurt more and have been hurting at least occasionally for many years in a way that I blamed on sleeping position etc.

Sorry this is so long, I'm still experiencing brain fog so I ramble even more than I used to. I could have waited until later but I feel a need to share my story right now to focus my mind in a linear fashion, instead of letting my head spin thinking "what if it finds something else instead" and "what if it finds nothing".

Thanks anybody who read all of this!

Comments

  • Hello @compulsive_rambler,

    Welcome to the online community. It's lovely to have you here.

    Seems like you've been having a stressful year with regards to your health, to say the least. No need to apologise for rambling, that's what we're here for!

    You say you are waiting on a conclusive diagnosis of psoriatic arthritis - here's some information on the condition:

    And you might find this information about fatigue helpful too:

    Please do let us know how you get on. In the meantime, I encourage you to take a look around the online community and join in with any discussion you like.

    Best wishes,

    Sarah (moderator) x

  • frogmorton
    frogmorton Member Posts: 29,506
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    Gosh what a tale to tell @compulsive_rambler

    I did manage to read it all and you poor thing! I have to admit it was a lot to follow!

    I so so hope the MRI reveals something which gives you answers and that treatment can follow for you.

    If it does turn out to be PsA it is treatable and we have quite a few members who have it here so you will get plenty of advice and support while things get more under control for you.

    Sending ((())) let us know your results as soon as you get them

    Take care

  • compulsive_rambler
    compulsive_rambler Member Posts: 7
    edited 27. Mar 2021, 13:00
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    In case anyone checks this thread for an update. The non-contrast MRI only found a "tiny effusion", which I have since read in academic papers is impossible without a contrast agent for radiographers to tell apart from synovial thickening (which an ultrasound found six months before in that ankle). Effusions and synovial thickening are both more common in inflammatory arthritis but many other conditions too and are common in people with no symptoms at all, so by themselves don't prove anything. The rheumatologist is still calling it "probable psoriatic arthritis" and wants to try a steroid injection in the buttock muscle because it works quickly and if it helps it will confirm that the muscle and joint symptoms are inflammatory in nature. My other post-viral diagnoses are proven by scans/blood tests/slit lamp examination and are inflammatory by definition, and all apparently are associated with PsA, even the salivary gland inflammation and euthyroid Hashimoto's, I have since found out. But joint pain isn't always inflammatory, and mine isn't that bad, so I still have doubts. Even the ankles swelling could have had other causes, especially as I had potential pulmonary and cardiovascular symptoms like breathlessness, cough and very heavy achy legs at the same time when that was at its worst.

    I would get the injection but I can't afford it right now. I'm on week 30 of the now 40-45 week NHS waiting list for rheumatology. That's 11 months waiting list at a time when there is a predictable epidemic of viral-onset rheumatic signs and symptoms that most people have not even being appropriately referred to rheumatologists for yet (I'm on multiple post-covid support groups, rheumatology is the least commonly mentioned referrals happening despite joint symptoms being among the most commonly mentioned symptoms). Imagine when some of these people's conditions advance to the point that doctors can't fob them off with "it's all in your head/just give it time/just exercise more". What will the waiting lists be like then?

  • jamieA
    jamieA Member Posts: 731
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    I've just read your posts and thought I should reply as it looks like your last year and mine have a number of parallels. Sorry if this response is over long but I just wanted to get the details over.

    Like you I have psoriasis and like you I fell ill in March 2020. By that time my GP had moved to online consultations only. My GP remotely diagnosed me with a chest infection and prescribed antibiotics which appeared to clear it up. However the chest infection returned in April and I was prescribed a different course of antibiotics during which time my ankles swelled. My GP put this down to an allergic reaction to the antibiotics. I had a further chest infection in May and this time I was referred to hospital. The consultant I saw reckoned I had had covid-19 back in March but had no test kits available to prove that had been the case. I continued to take chest infections but in September my knee swelled up. I wasn't too worried at that point as I had had the meniscus in that knee removed some 30 years previously due to a football injury. However by end September I was referred to hospital to have the knee drained and given a steroid injection. By end of October I was back at the hospital for the same procedure but by that time my hands had also swollen and I could not close them and my shoulder joints were very sore. The consultant I saw then drained my knee again and gave me another steroid shot but out of the blue asked me if I had psoriasis and diagnosed me with psoriatic arthritis. He put me on a course of Sulfasalazine and NSAIDs. This consultant had previously worked as a professor of rheumatology so was pretty certain of his diagnosis. By mid November I was back at hospital with the same symptoms and same treatment. However later in November I took yet another chest infection which became pneumonia and my joints became severely painful to the point I could not move them. I was admitted to hospital and treated with antibiotics for my pneumonia and prednisolone for my joint pain. In blood tests my CRP level hit 340 when normally it should be 2-3. I've been told this is an indicator for infection/inflammation. I saw a consultant rheumatologist in early December and in January/February had steroid injections in my bottom and in my shoulder as an out patient and put on Methotrexate to be taken as well as the Sulfasalazine. I was also put on Etodolac NSAID. I've was readmitted to hospital in December and again in March with the same symptoms. Over the year I've now had 8 chest infections/pneumonia and been told by another consultant and another doctor that they suspect I had covid-19 back in March 2020. During the March hospitalisation I've had further steroid injections in my knee and shoulder which have also helped my hands. I also had an MRI scan on my shoulder which showed the level of inflammation.

    Before all this started I was a fit, health, retired 64 year old who enjoyed hill walking and amateur photography - walking 60-70kms a week with my dog.

    I do wonder if - if I did have covid-19 back in March 2020 - whether that was the cause of all of this.

    I had a meeting with my consultant rheumatologist earlier this week and he said that the chest infections were probably the cause of the severe pain in my joints as my immune system mistakenly attacks them when detecting an infection anywhere in the body.

    Just one last thing I'd add - all my treatment has been on the NHS. Both my GP and the first doctor I saw in hospital saw me as an urgent case and pushed for me to be seen by a rheumatologist. Can't your GP do the same?


    Apologies again for the length of my reply.

  • compulsive_rambler
    compulsive_rambler Member Posts: 7
    edited 29. Mar 2021, 16:44
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    My GPs have been very keen to get me seen sooner, but there are only the routine list and the urgent list, and you can be moved from one to the other but not bumped up within each of them. The NHS rheumatology department has kept me on the routine list throughout all the updates my GP has sent them, I assume because my joint issues themselves haven't been urgent. The only issues I've had that have been urgent (my eyes, and recurrent centre-forearm swelling that they wanted checked urgently just in case of blood clots I think) have been for other specialists to deal with on an urgent basis, even though the underlying systemic disease was thought to be the sort of things rheumatologists treat by that time. Basically, treatment of an underlying systemic condition is not an urgent priority when they can prevent things like blindness by just treating the eyes in isolation.