UCTD and Lupus relationship.: Having had a clear... - LUPUS UK

LUPUS UK

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UCTD and Lupus relationship.

Musicteach profile image

Having had a clear diagnosis of UCTD, I feel very much in the dark as to what I can ask for and what to tell people. Even my GP doesn't know what this is...and I feel as if he thinks I am a waste of time sometimes, as my symptoms come and go in varying ways. Just joining a support group is good!

18 Replies
LupusAdmin3 profile image
LupusAdmin3LUPUS UK

Hi Musicteach,

Welcome to the LUPUS UK community here on HealthUnlocked.

We have an information pack available for people who are either approaching diagnosis or are newly diagnosed. If you would like to receive a pack, just send me a private message, or an email, with your name and address and i can arrange for one to be sent out to you.

If you need anything at all i'm happy to help. hayley@lupusuk.org.uk

Best wishes,

Hayley

LUPUS UK

Yozzer profile image
Yozzer in reply to LupusAdmin3

Hi Hayley

I'm new on here and have been diagnosed with UCTD to could I possibly have a pack with the info to

I usually just say I have lupus or mild lupus, because most of my symptoms are lupus like and no one would have a clue as to what UCTD is. I also have been diagnosed as lupus in the past (and once as MCTD). I don't think my GP believes I even have it, since it has been a long time since I had ANAs. Some non-rheumatologists don't seem to understand the UCTD IS a CTD, it is just undifferentiated and treat me as if it is fibro or depression. It is sometime quite a job to make even doctors understand, so I pretty much bother with non-doctors.

Musicteach profile image
Musicteach in reply to AnnNY

Thanks, AnnNY! Your situation mirrors mine..I tell people it's a lupus variant mostly...but my GP insists on calling it inflammatory arthritis, despite my diagnosis! I think it is so like lupus that it seems crazy not to include it on the list..and, anyway, we are on lupus support site! Maybe it's time to start talking about it and get recognition for it. My worst moment was when a friend said she thought it was a psychological response to the death of my mother. Mmmm....

Hi Musicteach

I have the same diagnosis of UCTD and find it difficult explaining it to doctors!. I tend to say I have a connective tissue disease like Lupus and they seem to accept it ok. Thanks for the great question.X

Thanks, Misty14. It is a misunderstood condition, much as ME was...now that has been recognised, maybe our will be, too! At least we have a better prognosis than full blown wn lupus, so I guess we have to be grateful! I feel much happier now that I know I am not alone...I had never heard or come across anyone with this until now! Hope you are in a good phase at the moment.

misty14 profile image
misty14 in reply to Musicteach

Hi Musicteach

It is so helpful to talk to people who understand on this Forum isn't it?. I don't think there are that many of us with the UCTD diagnosis.

Just out of interest have you had it explained to you as symptoms of several CTD's coming together?. What treatment are you on?. I'm trying to reduce steroids and flaring slightly at the moment!. Got down from 25 mg to 19 mg. Have always struggled to reduce!. Hope your well X

Musicteach profile image
Musicteach in reply to misty14

Thanks for your reply, Misty14! Yes, it was explained that I have a mixture of lupus, inflammatory arthritis, sjogrens and some other symptoms, including some pretty severe acid reflux. I am on plaquenil and methotrexate, plus lansaprozole for the reflux. Tramadol helps ease the pain when there are flares. I couldn't take steroids, they made the symptoms worse and I have to say that methotrexate works wonderfully for me. I am on 20mg weekly and I can't believe how two tiny pills once a week can make such a difference! The major horrors are fatigue, which I'm guessing you know all about, and my voice, which comes and goes, so I teach now through explanation rather than demonstration and have to use a pianist, as my fingers claw up when I play. I am lucky that I can choose my teaching days so I plan three days a fortnight and a week off. Sofa days and mindless tv are quite common! How do you cope? Can you still work? Take care!

misty14 profile image
misty14 in reply to Musicteach

Hi Musicteach

I'm glad you've had the UCTD diagnosis explained because I hadn't and learn't more about it on the Forum!. It's great Methotrexate works so well for you, it's a good drug for the arthritis. I took it successfully a few years ago . How long have you been ill?. It's wonderful how you've adapted your work so that you can carry on despite the difficulties, must be very rewarding!. Do you teach in school or special needs kids or adults?. You must have been devastated when your health changed!. I've never had a paid job since leaving school because of my health but have done a series of voluntary jobs when my health allows. I have just had a year off now from my local Citizens Advice Bureau. I do miss it and want to go back. Fatigue is awful, can get me down as I want to do more and can't , much as you must feel!. I wish there were more things we could do to minimise it!. Lovely chatting to you, enjoy the bank holiday. X

Musicteach profile image
Musicteach in reply to misty14

Hi, misty14! I think I have had this condition in varying wYs most of my life! I look back to seeing doctors for odd symptoms and then they appeared to clear up, only to return years later. I always had a problem with the sun, staying in it would literally make me sick, so it was always there. I had major symptoms five years ago, and have just been positively diagnosed, although ANA was positive then. I had a career on stage, in opera and musical theatre, then lectured at College, but now teach privately, anyone from nine yeRs to seventy plus! It's great, and some have enjoyed success, but generally at the end of the day I have the clawed hands, swollen feet and deathly fatigue....but Dr Theatre is good, somehow I keep going! I am so sorry for you that you can't work, I am so lucky that I can be self employed. Enjoy the break, too...it's really lovely to chat with you. X that should be ways, btw, earlier...bloody predictive text! And years......

misty14 profile image
misty14 in reply to Musicteach

Hi Musicteach

I think a lot of us on here can say we've suffered for years with symptoms that couldn't be explained and then suddenly things change!. I was 5 years old when Raynauds started and then 14 when the illness started but like you it's only been in the last 5/6 years when my health really changed that I've had better diagnoses!. I do wonder why diagnosis can be so elusive for some of us?. That is so tough for you , having had a stage career but so rewarding now that you can still teach all age groups. Must be great seeing them flourish!. Hope this weather warms up, they keep promising it will, typical bank holiday!. Whereabouts are you?. Keep as well as you can. X

Musicteach profile image
Musicteach in reply to misty14

Hi, Misty 14! We have just returned (with my husband) from a pub lunch .. weather sort of ok and a great meal, but halfway through I had the clunk on the back of the head fatigue...you will know what I mean, so although enjoyable, this is the sort of thing that I believe makes it hard for others to understand. Heigh ho! It's bank holiday, so there's nothing urgent to do! I live on the south coast, near Eastbourne centre, and close to Brighton. Where are you? I love my teaching, and I have a student who is currently in Billy Elliott, so I can sit back and feel proud of my pupils successes. Don't miss the world too much, only when there is particular role/song that I used to love! Do you have any hobbies? Love, xx

misty14 profile image
misty14 in reply to Musicteach

Hi Musicteach

Hope you recover today from your meal out, it's sad when we pay such a price with our health just doing something others can take for granted and they can't understand what it is like!. This is why chatting to fellow sufferers is so good for us!. It's funny you live in Eastbourne, we have friends there who live in Bourne Street in a flat. Is it anywhere near you?. Is it busy with tourists at the moment?. I live in North Devon not far from the coast, we get lots of tourists. I love making cards and wish I had more time to do it ironically!. I should be bored at home shouldn't I? Ha ha!. Are you back teaching tomorrow?. Do you do it from home?. You must be so proud having a pupil in Billy Elliot. Shows how talented you are and your job satisfaction must be huge!. Do you have time for hobbies?. Good luck and take careX

Musicteach profile image
Musicteach in reply to misty14

I really feel we are starting up a friendship! Yes, I am not far from Bourne St, so if you come to visit your friends, we should meet up? I spent the evening on the sofa, feeling good today, and yesterday watched The C Word on TVs...did you catch it? The blogger, Lisa Lynch, was inspirational and put me and my probs in perspective. At least I know I am not going to die...well, at least I hope not for a while! Yes, I have hobbies, I read a lot and draw a bit and love sewing and very fine crochet, but these are curtailed until I have a really good day, when I then go mad and work for hours...then flop, in pain! Yes, I have a teaching day tomorrow, and a new young bass who is wonderful to work with...21 and so promising. But I also love teaching people who think they can't sing..it then becomes a little like midwifery, when they give "birth" to their voice! For you, what materials do you use for your cards? And are you modernistic, or traditional? I Love Devon, a bit envious of you living in that place, although Sussex is beautiful and Beachy Head awesome. Take care.....lovely to chat with you. Xx

misty14 profile image
misty14 in reply to Musicteach

Hi Musicteach

It is a small world isn't it?. I can't travel because of my health , our friends usually come to us en route to their holiday!. Have you visited Devon as you like it?. We are lucky to have a choice of coast or country. I used to live in Sussex, East Grinstead . Have you always lived in Eastbourne?. I love reading too, what kind of books do you like?. You have interesting hobbies it's such a shame the illness has hit your hands so much, makes it so hard but you have such fighting spirit!. I recycle greetings cards to make my own, use pretty stickers too and go for the modern styles, minimalism. I find it very relaxing and love having an end product that I've achieved. We can message privately on here if you would like and can see how we can?. Hope your teaching is going well. It's lovely chatting to you. Take Care. X

Musicteach profile image
Musicteach in reply to misty14

I hope we can message privately, but haven't a clue how to do so! Let me know how we go about it! I like the sound of your cards and hope to see one one day!

I lived in Kew before Eastbourne, close to the Gardens and it was lovely, but here, especially now with the lambs springing up everywhere is beautiful and my husband takes me for lovely drives, so I can fully appreciate it. I find that walking can make me quite breathless and lightheaded. Heart tests were basically negative, except for a very frequent ectopic beat, which was not bothering them, but I still find that certain inclines get to me. I read all sorts...even cornflake packets! But novels, crime fiction and currently books about the last days of the Tsar are keeping me happy. I use a kindle, as some books are too heavy to hold for long. I look forward to our next chat, especially if we can work out messaging, and meanwhile, stay sassy and hopefully, we'll. Xx

Hi, MusicTeach, really interested about what you said about your voice - some years ago I lost my voice completely, for a year or more; private doc (£100 ill-spent!) told me it was because (in as many words) I was an overweight middle-aged hypochondriac woman; after I recovered from *that* insult, on the advice of the dermatologist I was seeing for urticaria finally went back to A&E and discovered (a) I had infection in my vocal cords and (b), when referred to Barts, that in fact there was more of a problem because cords weren't meeting in the middle when I spoke - but okay when I sang! The dermatologist was the man who diagnosed my lupus, as well as lots of other things - the man was a genius! But thanks to his actions I got to see a very good voice therapist and eventually got my voice back - but it tires and vanishes *really* quickly (I sing in a choir when I'm well enough, and can do *one* concert . . . then I'm pretty well wrecked for a week or more, voice and body). It took me a long time to realise that lupus was certainly partially responsible, if not the complete cause. So my question: as a music teacher, as well as planning you week (brilliantly, I must say) are there things you do to try to strengthen your voice? Love any advice you might give as I've lost my top two or three notes and can't get very low at all now . . . thanks to the forum have learned *so* much (like misty14), but not discussed singing with anyone else yet :-)

Hi, Carcrashgirl...thanks for your blog.. I can sympathise with your problem. I find that singing for any length of time can cause my connective tissue to swell up and that is what affects my singing, plus the Sjogrens typical dryness. I can sing, but my voice cannot be relied on...mind you, it might well have been time to leave the stage, anyway! I saw a vocal therapist, but we ended up swapping notes as she said I knew as much as she did! (Flattering!). For you, I would say, make certain that you don't push your voice at all..think of a yawn, (in fact, next time you yawn, notice how your palate rises, your breath lowers to fill the lower third of your lungs and your ribs and middle back expand). That is a singer's breath. Never try to be louder than you feel you can achieve and when singing, focus your voice as much behind you as to the front. You are, effectively, filling the space around you. Also try very gently palming your cheeks forward, so that your lips are forming an unforced O shape. That can help immensely. The fact that your chords close appropriately when you sing shows that they are working, but little and often will help with the above exercises and never strain. Hope this helps! Good luck. I will try to distance help you if I can.

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