Any Advice Welcome!

[RMC17]

Hi everyone. I've just been diagnosed with UCTD being told by the hospital rheumatologist to look up the condition on the internet. He prescribed Hydroxychloroquine that has helped in some issues but I'm finding that some are exacerbating. I'm feeling a bit 'all out at sea' as there is a lot of conflicting information on the internet. I was a bit anxious when I got my diagnosis so was totally unprepared for it. Next time I see the rheumatologist, I will make sure I have questions prepared. In the meantime, looking forward to any information available here. Take care and stay strong!

[MusicalFurbaby]

Hi RMC17 and welcome! Wow, a new diagnosis takes a lot of getting used to, doesn’t it? Feel free to post here anytime, there are lots of people with UTCD or similar conditions so there’s a wealth of info and experience on this forum.

I’m taking hydroxy too but I found that while it helped with some of my symptoms (like rashes and vasculitis), it’s done nothing for the joint pain or anything else. These meds are a bit trial-and-error, we never know how helpful (or not) they’re going to be or what side effects we’ll experience.

In terms of your next rheumy appt, definitely take a list of questions with you! I also write down any symptoms I have experienced, including when they started, when the last one occurred, how often they happen, whether there are any apparent triggers and whether anything seems to make them better or worse. I also ask for things I’m curious about: medication options, current research, support groups, etc.

Keep us posted and let us know how you go! 🌻

[RMC17 in reply to MusicalFurbaby]

Hi Furbaby. Thank you so much. Never posted to forums or social media before so this is me taking the plunge. Whilst I'm getting my head round this condition, I'm having a look at the posts here and this is helping already. I'm sure I'll have lots of questions! Best wishes.

[MusicalFurbaby in reply to RMC17]

Good on you for taking the plunge! Glad it’s been helpful already. ☺️👍

[UCTD]

Welcome to the club! I agree with MusicalFurBaby’s advice. I was diagnosed with UCTD in 2016, have progressed to what looks like limited systemic scleroderma. I am on a whole host of meds and they take time to work so it is a matter of trying them out and making a list of symptoms for your Rheumatologist visits. All of these autoimmune/connective tissue disorders have overlap/ symptoms that are shared so try not to focus too much on the diagnosis but how to manage your symptoms. I have taken Plaquenil since 2016, it has helped. There is a lot of information on the internet, so it can be overwhelming.Rheumatology nurse ,physiotherapist and occupational therapist are fantastic sources of practical information, there should be a team attached wherever you attend rheumatology appointments.Best of luck

[RMC17 in reply to UCTD]

Thank you UCTD. I'm finding the responses and this site so helpful already. I felt a bit of a fraud joining as my condition was found by chance through blood tests for something unrelated and I'd say my symptoms - so far - are mild. I am experiencing things such as arthralgia, Malar rash and Raynaud's but hopefully the medication helps. In my short time on the site, things are starting to make sense, everyone is helpful and I'm not alone - although it would be better if none of us had autoimmune diseases. Best wishes.

[RosieA]

Welcome. It is really frustrating when we are given a diagnosis and the hospital gives us no information about it. When I was first diagnosed with an autoimmune disease I spent ages on the internet trying to find out about it. Someone on the forum gave me information from the following hss.edu/conditions_undiffer... - excellent. The other place I get information from is google scholar.I also have UCTD and am on Hydroxychloroquine and steroids at present but may need to back on to HYD with Methotrexate to control my joint symptoms. As the previous response has said there is a wealth of information of this forum. Everyone is very friendly and there will probably be nothing you are experiencing that someone won't be able to guide you on.

Best advise in these early days is to keep a diary of all your symptoms- however small they seem. They will help to build a picture. Keep posting on here when you feel the need- it was my salvation. Hope that helps a little. xx

[RMC17 in reply to RosieA]

Hi RosieA. Your response helped more than a little - it helped a lot. Every bit of advice is appreciated and the information on that website was more concise than the information I've found elsewhere. Really appreciate your input. Best wishes.

[RosieA in reply to RMC17]

You're very welcome and I am glad that it has helped. I forgot to say that over the course of the two and a bit years since I came under the care of Rheumatology symptoms have evolved and /or changed in intensity. I first presented with fatigue and joint tenderness/swelling. I later developed, in addition, mouth and nasal sores, awful photosensitivity, malar rash, plantar fascilitis, hip bursitis, dry eyes, costochondritis and synovitis. This isn't to worry you as it all comes under the UCTD umbrella but to highlight how it's a shifty 'little' disease to say the least and hence why the diary is so very important. The fatigue can make us drift and when I condense my diary prior to a consultation I realise how all of it is affecting me and I drive that home to the consultant. Since you are newly diagnosed have you been given a date/ projection for your next appointment? Also, look up the spoon theory if fatigue is a having a heavy impact. A fantastic way of learning to pace yourself and an excellent way of describing your needs to friends and family. x

[RMC17 in reply to RosieA]

Thanks RosieA. Again, your advice is really appreciated. Will definitely start that diary for my next appointment. Diagnosis was in February and was told I'd get a follow up in five/six months so a wee while yet. I was like a rabbit in the headlights at my consultation and totally unprepared. Now I've had time to start to digest, will make sure I'm prepared for the next appointment. Fatigue is having an effect so am away to look up spoon theory. Best wishes.

[RMC17 in reply to RMC17]

Thank you for the pointer to spoon theory. I ended up reading two versions as I didn't quite grasp the first one. Upon reading the second version, everything clicked into place. Found myself thinking in spoons today! I've been off on holiday this week and am not going to feel guilty for not getting all the chores done that I had planned! Best wishes. x

[Spanielmadlady]

Hi and welcome.great advice above .you say you started hydroxy in Feb....have you had your eyes tested? It is absolutely essential to have them tested before you start and every year to check for a rare condition called retinal toxicity which hydroxy can cause. Hydroxy like most meds for lupus takes up to 6 months to work so patience is a virtue .hydroxy can also cause photosensitivity so stay out of the sun.cover up head to toe inc wide brimmed hat,sunglasses and factor 50 all year..( yes us lupies can rock anything from big hats and sunglasses to alpaca socks in supermarkets.. another post from another day 😁 ).keep stress to an absolute minimum and pace yourself. Sleep ,sleep and more sleep and naps are good......look at your diet for triggers for me suddenly it's dairy 🤷‍♀️ .you will through trial and error learn your boundaries and learn to stick to them ...doing too much on a good day gives you 2 or 3 bad days ...we are all guilty lol.its a rocky road to navigate but we've all been along it before you so can help .chronic health conditions are manageable if you are prepared to adapt ....if not then you will struggle.

We share other things here like crafts,pets,achievements and brain fog moments too....its still important to laugh.

Keep smiling xxx

P.s Learn to say No ...its time to put yourself first . Best wishes SML x

[RMC17 in reply to Spanielmadlady]

Hi SML. Great advice and I fully intend making the most of all I receive. Before starting the medication, my eyes were one of the concerns I had about taking it. I'd had a routine eye test in January before the diagnosis and have asked my optician to mark me as needing yearly tests rather than the usual test every two years. From what I've read, hopefully the eye risks are rare. Best wishes. x

[whisperit]

Welcome RMC17

I was first diagnosed with UCTD several years ago, and was confused about what the diagnosis meant. I gradually understood that it just means you have a connective tissue disease where your immune system is attacking your own tissue, but the signs you have at the moment don't clearly fall into one of the more specific diagnostic categories like lupus or rheumatoid arthritis.

It could persist in that state for years, or your immune system could make up its mind to take a special dislike to one system or another, and your diagnosis might change as a result. When first diagnosed, my main sysmptom was lung inflammation, but after that subsided, I had severe muscle inflammation. So I've collected secondary diagnoses of interstitial lung disease and polymyositis.

These diseases can present in such a variety of ways, I often think everyone has their own version. Virtually everyone gets fatigue, though!

Luckily, the treatment doesn't vary much - nearly everyone gets prescribed hydroxychloroquine, and then steroids to reduce the inflammation. More powerful DMARDs (disease modifying anti-rheumatic drugs) like methotrexate and rutiximab might also be used.

Whatever your problem, you can bet someone here has faced it, and you will get some help. x

[RMC17 in reply to whisperit]

Hi whisperit. Learning about UCTD has been trial and error but in the short time since I've joined this site, I've learned so much more. Thank you all. I won't bombard everyone with questions but think I'll make one post with a question about possible upcoming surgery. Looking forward to any advice. Best wishes. x

[lowraind]

Hi RMC17,I see that you live in the UK. I am appalled that the hospital rheumatologist told you to look it up on the internet. There are a lot of ignorant people who post about things they know nothing about. I am in the US, and there are specific sites that I use, such as the Mayo Clinic and the Cleveland Clinic. Hopefully, there are reliable sites in the UK.

[RMC17]

Thanks lowraind. Was too flabbergasted when I received my diagnosis by telephone call to question the advice to research the condition on the internet. Will go in fully armed with questions at my next consultation! Best wishes. x

[Sher78]

As with many autoimmune issues, it can affect every individual differently so what you are experiencing may not be the same as what a person with the same condition experiences; we are all different. Hydroxy can take a good few months to work. For some people it can be a great help and for others, it can be about as helpful as a chocolate teapot. Learn to listen to your body because that will be the best guide for you. As mentioned in previous replies, keep a note of symptoms and a brief description of what you have done that day, it could help you find possible triggers as to what makes you feel worse and what makes you feel better. Write down any questions you have, any new symptoms etc and when you have an appointment, pick the most important ones to YOU and ask them. May be worth taking a Vitamin D3 supplement. As for the Raynaud's, the only thing I found that help me was to get silver threaded gloves (specifically for Raynaud's, search them up online). Good luck.

[RMC17 in reply to Sher78]

Hi Sher78. Your advice is appreciated and welcome - very helpful. As to the gloves, away to research right now! It's not long since I bought thermal gloves but they were useless. Never heard of silver lined ones so will give them a try. Have had occasional Raynaud's in my fingers for longer than I care to remember but now, it's daily. Best wishes. x

[Sher78]

Not sure if the link will be taken down but here it is (for the gloves). I bought the silver coloured cheaper ones raynaudsdisease.com/silver-...

[Sher78]

You MAY find them cheaper if you look online but at least now you know what you're looking for

[RMC17 in reply to Sher78]

That's perfect, thank you so much. Have them on order now. Just hope they deliver soon as mornings still chilly! Best wishes. x

[RMC17 in reply to Sher78]

Hi Sher78, can't thank you enough for the recommendation. I tried the gloves this morning and what a difference. I find many things trigger Raynaud's but especially my car steering wheel and shopping trolleys. I drove to the supermarket this morning and still found a couple of fingers affected but I would say only mildly. However, I had put the gloves straight on from the packet and they were a bit cold to the touch. Will try heating them on a radiator for a few minutes next time. Well worth the money! Best wishes. x

[Sher78]

So pleased you have found them helpful, excellent news 😄

[Brychni]

Welcome to the club!