Rant needed!

[Angiedj]

I have been told I have UCTD, thyroid problems & also Raynauds. (Unfortunately I also have a benign brain tumour which I've deferred treatment for at present due to personal reasons). Saw the rheumy today who only seems interested in treating the Raynauds & never seems interested in my numerous other symptoms! Today I was offered a drug with probable side effects of headaches- I already suffer with them, so without consulting my doctor, who knows my full medical history, I have chosen to wait & up my usual meds. I feel as though I waste NHS funds seeing him & getting nowhere tbh, as my doctor is so much more supportive. Thanks for reading

[overnighthearingloss]

Hospital treatment revolves around the speciality of the consultant in general, with quite definite lines of demarcation. I have found that as nhs funding has been reduced over the years the demarcation lines are more stringently enforced.

There used to be more willingness for a consultant to refer to another consultant with expertise of a different field but I think they are less inclined to refer on these days.

Supposedly with gp centred care a gp can do a referral but they are also trying to make cost savings. If your gp is supportive it may be best to take that route.

[honeybug]

🤗🤗🤗🤗🤗😘

[Joy_1]

Hi Angie

I have UCTD with lung involvement.

My local hospital failed to diagnose my autoimmune disease. My GP went nuts and referred me to my nearest teaching hospital. They have a specialist clinic dealing with Connective Tissue Diseases. The consultants are fab but naturally the main thing they consider when I walk through the door is how my lungs are doing. As my lungs are gonna kill me off well before my joints do.

6 years down the road the damage the disease has done to my lungs remains mild (hooray!), and basically by treating this first I am here today. Perhaps that is what they are doing with you?

I don't have Raynauds so not sure what meds are prescribed for that. But MTX has given me my life back. And I am playing the game of getting off steroids. Steroids initially saved my lungs/life. I also hit the pool 3 times a week and this has brought my lung function back to normal.

Hopefully you will here from a few others that have UCTD as there are a few of us for sure on this site.

Joy

[Lisalou19 in reply to Joy_1]

I am just waiting on my lung function test. Your response here has been good for me to read. Glad your lungs have responded well to treatment x

[Joy_1 in reply to Lisalou19]

Hi Lisalou

A short sharp high dose course of steroids (30mg) was what the Prof prescribed initially. After that I was under the Chest clinic as well as Rheumatology. I asked the chest consultant what should I do other than take my meds religiously. She said "get in the water and swim swim swim".

I went from only managing 2 lengths a session to swimming 65 lengths (with one 2 to 3 min break in between) three times a week. I could not have swam 65 lengths prior to having UCTD!

Stay positive.

Joy

[Lisalou19 in reply to Joy_1]

Brilliant

I was thinking of starting up swimming as I do feel quite breathless at times and was thinking I’m unfit !!! I’m scared il get their and not manage a length 😂. I’m 100% carry this advice of swimming close to my chest, and if my lungs have been affected I know one thing I need to be doing xx

[KayHimm in reply to Joy_1]

That is wonderful to hear you got your life back and are swimming. I also have UCTD and was diagnosed when the term first came to be. There seems to be many of us with this diagnosis. I used to believe I was the only one.

[Joy_1 in reply to KayHimm]

Yes KayHimm, you do feel quite alone initially.

It's been a hard slog to get to this point. It's helped that I am a 'glass half full' type of person and that I have a fab pool just 5 mins drive from my house. When I get into the water I return to the person I was prior to having UCTD.

[KayHimm in reply to Joy_1]

That is terrific. I totally understand. I feel this way on a small cruise ship. I can sit under the half of the pool deck that is completely covered — no UV rays at all — and in the late afternoon jump in the salt water pool. It is heaven for me! I will think of you as I float in the salt water!

[Joy_1 in reply to KayHimm]

Sounds glorious!

One of my cousin's said to me the other day that I should become a mermaid. Sounds like we are both headed in that direction - ha ha!

[KayHimm in reply to Joy_1]

Well, I spend a lot more time lounging in the shade, but the whole experience makes me feel « normal. » I have a trainer at the gym who is working on my strength and improving my autonomic function. That has been great. The mermaid life sounds good!

[Hidden]

I can very much relate to what you are saying although I have slightly different conditions. I too think that I’m wasting NHS time now because my Rheumatology team can never really deal with the problems I do have (thyroid and Sjögren’s) but instead refer me for various tests which generally prove normal or relatively so.

I think at least part of the problem is the way we get portioned up like a cadaver with focus on one body system only. Only GPs get to see the whole of us and their time is too limited and their knowledge is too general.

The other issue we face is that the time between appointments is increasingly long and a lot can occur in the intervening period that we can’t access their opinion on.

This is a problem with many chronic conditions of course but if we are untreated - as I am too - then the focus can be on one aspect of our diseases at the expense of another -for the simple reason that it’s flaring at the time of else that they feel it is at least something they can offer us practical help with.

So for you it’s Raynaud’s, for me it’s neuropathic pain. But whatever it is it often feels as if they are failing to address the underlying cause. No suggestions but you aren’t alone feeling hopeless and helpless about it.