Letter from bath rheumatologist

[catblue1865]

Just had letter from bath appointment, she said longstanding symptoms potentially consistent with uctd but low index of clinical suspicion. The longstanding nature of the symptoms is reassuring from a progression prospective. But I don't find that reassuring, I agree it's very unlikely I've got lupus as by now my kidneys would be affected but understood from reading that uctd did not cause organ damage (although skin is an organ and my photosensitivity is very bad).

I'll go for the calliscopothy test but if results are negative and no treatment/diagnoses made I won't be looking for medical help again.

[Spanielmadlady]

Not necessarily catblue. About 50% of lupies have kidney involvement so that means 50% don't.Out of the lupies I know I'm the only one with LN. Don't give up looking for medical help especially if you are struggling. UCTD still needs managing. I know it's hard I understand your frustration because along with many others I've been there but keep going x SML x

Edit... The only way to be sure if your kidneys are involved is by biopsy as more often then not there are no visible symptoms x

[CarolMcl]

Don't give up looking for answers, you have symptoms and deserve answers. I really don't understand who gave you the information that if you don't have kidney involvement then you don't have Lupus. I have Lupus and I have no kidney involvement whatsoever, I get checked at each rheumatology appointment as a precaution but I'm always ok. 🌹

[catblue1865 in reply to CarolMcl]

No one actually gave me that information, it was a conclusion I presumed as have been told several times I don't have lupus ora ctd

[ali998]

I have a UCTD diagnosis rather than Lupus although bloods and symptoms point to Lupus. Rheumatologist assured me label wasn’t as important as the treatment which is the same. The treatment has certainly completely changed my life so I’m happy to agree with him. Keep going.

[catblue1865 in reply to ali998]

Was the treatment hydroxychloroquine? She did say she'd be OK with that but didn't think it would help my photosensitivity which is my worst symptom at present.

[Spanielmadlady in reply to catblue1865]

Hydroxy is the corner stone if you like of most treatment plans. I've been on it 6 yrs now. If they do offer it to you eye tests beforehand and every year are a Must. Do you use factor 50, cover up head to toe, limit time outside, wear a hat and sunglasses? Photosensitivy can also be caused by windows and light bulbs especially fluorescent lights x

[catblue1865 in reply to Spanielmadlady]

Yes I know, unfortunately factor 50 sunscreen doesn't help not even Dundee sunscreen, I'm affected by both daylight and artifical light. Got uv film on windows which helps.

[Spanielmadlady in reply to catblue1865]

Do you wear it everywhere inc under clothing? Maybe uv clothing might be worth a try 🤔 x

[Spanielmadlady in reply to catblue1865]

Have you changed light bulbs to uv free? X

[ali998 in reply to catblue1865]

Yes hydroxy. I get some photo sensitivity but not too bad provided I use factor 50. I use a serum so less clogging/visible.

[Tiggywoos in reply to catblue1865]

Spanielmadlady reply below is spot on . Have to be religious with factor 50 as soon as you get up as even been near the window or under lights kicks it off . Supermarkets and the lights can be worst for headaches xx ironically hospital light bulbs awful

[catblue1865 in reply to ali998]

Glad to hear your treatment has helped so much.

[CecilyParsley]

Having had a sliding scale of diagnoses from Lupus to Behcets, UCTD, MCTD depending on which Rheumatologist I saw I totally concur with what others have said here, your symptoms are the same so it is the treatment that is important, Please accept the help that is offered to you, at least be monitored so that if your symptoms change or worsen you will have a Consultant who can change your treatment if necessary. Unfortunately for all these conditions health can improve or worsen at times and NHS referral and waiting times are excessive when you are not in the system xx

[catblue1865 in reply to CecilyParsley]

Good point thanks for the encouragement.

[Morepasta]

I’ve been given the UCTD diagnosis. Was originally thought to have scleroderma. I had the capillaroscopy and I had changes in every finger apparently. Not enough to get a lupus or scleroderma diagnosis though. I’m on hydroxychlorquine and have been for over a year. I am supposed to be starting methotrexate at some point once I get a ct scan. I really did have to fight to get to this point, I had to push to get referred to rheumatology because my haematologist didn’t tell me I had a positive ANA. I had high CRP and ESR so my nurse friend suggested seeing a rheumatologist. I did get a referral but the wait was 152 weeks. I used insurance to go private and saw a rheumatologist that diagnosed me with scleroderma (limited) and then started me on hydroxychloroquine and I attempted to get back on the nhs. When I finally did see an nhs rheumatologist they repeated all the tests and had me do more tests. They didn’t think I had scleroderma. I then asked my gp if she would refer me to the royal free in London and she said there would be no chance that they would see you. I kept asking and she finally gave in and referred me and within a month I had an appointment letter for the royal free. When I went to that appointment I saw Prof Denton and he was great. He thinks I have UCTD because I don’t have enough symptoms to indicate scleroderma. Long story short if you want to get anything done in regards to your health you have to push and push until they relent. Advocating for yourself is the only way you will get the help you need. As many times as I wanted to give up I kept pushing, I even lost my job in the middle of trying to get a diagnosis. I was 26 when I originally started with the symptoms and I’m 28 now so I’m actually doing better time wise than most with the diagnostic process. I don’t usually comment I just read mostly but we seem to be in a similar boat so I really hope you can keep going and find out what’s wrong. Good luck ☺️

[redmaggie in reply to Morepasta]

Well said! I had a similar journey to you, and yes, keep pushing and challenge the lack of care. WE have to do all the "leg work!" I asked to go the Royal Free after local Rheumatology discharged me without any tests, no help or recommendation, but they confirmed erythromelalgia At least that diagnosis was important. My GP did refer and I was seen in a few months. Now labelled as UCTD and I have annual checks. what a difference in care! I was really imressed by Prof Denton, but I only see the registrars now, I understand why.