UCTD: Morning everyone. I have only... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)
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UCTD

Kornrock
Kornrock

Morning everyone. I have only just found this forum. An ad popped up on my Instagram. Why I have missed it I have no clue.

Anyway, I have been suffering Undifferentiated Connective Tissue Disease for a while now and never really been told that much about it.

My specialist is great and looks after me very well but a few gaps in what she has told me.

I telephoned the hospital at the start of the COVID outbreak and was told I am fine and not high risk but still not too sure. Everything is fine as long as I take my medication, have had to double up when it flared up again. The warmer weather is a great help and keeps the Reynauds under control too.

Does anyone have any information they can share about their own experiences in this strange new world?

Hope you are all looking after yourselves and family x

15 Replies
oldestnewest

Morning Kornrock. I have diffuse SSC with lung involvement. I take prednisolone and mychophenalate daily having just finished a course of cyclophosphamide. I am shielding still ( week 14 for me now) on the advice of my specialist at the QE in Birmingham. Everyone's case is different so I would always be guided by your own specialist. I have blood tests done at home and mask up for them as the nurse arrives, all shopping gets delivered, washed and disinfected. It may seem OTT to some but it has kept me safe. I hope you will find plenty of reliable informationb through this group. Stay safe.

Kornrock
Kornrock in reply to Agedbiker

Nothing over the top there, I have eased up on the shopping cleaning, on a big shop it is time consuming, but do as much as I can.

cheryldn
cheryldn in reply to Agedbiker

Hi Agedbiker. I have just been diagnosed in early April with systemic scleroderma, interstitial Lung disease and secondary Raynaud’s. I have just had my first cyclophosphamide infusion yesterday after being on mycophenolate since Easter and my symptoms getting much worse. Can I ask you how you responded to the infusions. I realise no 2 people are the same but I’m interested in knowing whether you felt improvement & after how long. TIA

Agedbiker
Agedbiker in reply to cheryldn

Hi cheryldn. I started on a heavy dose of prednisolone prior to my cyclophosphamide and took it throughout. Initially I was quite ill after the first infusion with vomitting , nausea diarrhea. The next infusions were nowhere near as bad. Some nausea/vomitting and shakes but much milder. Each time I had an infusion I would feel rough for a couple of days but after that my lungs were improved as were my joints. I don't think I realised at the time how beneficial the cyclophosphamide was but I would say that after number 2 infusion I first started to really feel the benefits. Now that I am on mychophenalate I have good and bad days but I would say not as good as when I was on the cyclophosphamide. I hope it helps you and you can get some relief. I wish you well.

cheryldn
cheryldn in reply to Agedbiker

Hi Agedbiker

Thanks for that info it’s very helpful & makes me hopeful. Luckily no nausea as yet & 🤞 none after the 2nd one.

Take care, hope you continue to feel better

Hi,

I just wanted to tell you that there's a lupus group here too on health unlocked which might be helpful too. I have scleroderma, sjogrens, PBC and hypothyroidism. I'm currently shielding, really fed up with it all many I expect! Lisa

Kornrock
Kornrock in reply to MissusTee

I will have a look at that, thank you.

Hello Kornrock

I've been living with system sclerosis for some years now - I'll be 80 in the autumn and I'm still ticking along. I have the full blown thing including sjogrens syndrome, Raynaud's, scleroderma etc. As the years have gone by I've developed reduced kidney function, heart issues, arthritis - all the things the textbook says we might get. As Agedbiker said everyone's experience is different so it's sometimes difficult to compare with someone else. We all get some or all elements of the disease to a greater or lesser degree. I take an immune suppressant called hydroxychloroquine and I've been on it for five years. I also have to take a cancer inhibitor as six months ago I was diagnosed with breast cancer but they won't operate because of my heart condition. I'm in catch 22 so I'm keeping my fingers crossed. I write a blog and there I have included information on our condition if you think it would be of help to you. I'll send you a message with the details. I'm sure you'll learn to live with your condition and then the future won't look so bleak. Very best wishes to you.

homeat42
homeat42 in reply to Betsie

Hi Betsie

(I am male, 69)

I have had Ssc with primary Sjogrens, and Reynauds (among other things) for 10 years now, and last year added Pulmonary Fibrosis to my wonderful collection. Not quite the same as you but the main ones are the same. I had awful reactions and side affects to the most named drugs for our conditions. I took nothing for 9 years apart from 1000iu of Vitamin D3. My consultants have followed my usage of this and now issue it to new patients from the start of diagnosis. It is an anti inflammatory as well as kickstarting various helpful systems in the body. The same as you I am confident that the right frame of mind is all important, and drop anything that causes you stress. That goes for negative people too.

I have lately been taking Hemp oil capsules and find them calming, although they do not contain the "happy" stuff.

I would be interested in reading your blog, can you please point me towards it.

Regards

John

Betsie
Betsie in reply to homeat42

Hi John, I'll post a message to you on the 'chat' facility with details.

Kornrock
Kornrock in reply to Betsie

Thank you Betsie. Sorry to hear you have a lot going on at the moment.

Everyone having different parts of the disease is hard isn’t it?

I was so happy to finally get a diagnosis, I was in terrible pain with my fingers. They swelled to the point of looking as if they would burst, the tips were suffering atrophy. Not fun at all.

Hi Kornrock,

I too have UCTD and have had it for over 20 years now. I also am on hydroxychloroquine, a ppi for reflux, Losartan and Amlodipine for Raynauds spasm. For years (I’m 67 now) fatigue, bouts of nausea and digestive issues were my problem. I’m still classed as UCTD despite being on the shielded list, predominantly for my GI problems I believe. I have in recent years developed worsening symptoms from Small Intestine Bacteria Overgrowth which as led to weight loss and osteoporosis amongst other symptoms. I have a long standing friend with the same diagnosis but she has had erosive arthritis so we are all different. I believe there is evidence Hydroxychloroquine slows progression so you may want to talk to your rheumatologist about that. I’m also on the Lupus forum as many UCTD people have symptoms of both.

All the best

So strange that until being diagnosed myself I had not heard of any of these things but now know I am not alone.

On hydroxy, have been for a couple of years now and has helped so much.

I haven’t heard of Reynauds Spasm. I am on nifedipine for my Reynauds.

Yes we are all different! I’m on Losartan for raynauds and the Amlodipine is very like Nifedipine. All raynauds is really spasm but I started waking up with severe chest pain early hours and they tested my heart. By process of elimination, they reckoned could be raynauds spasm in my heart. The amlodipine did however mostly cure my migraines. I’ve tried to drop it and they come straight back. I now have bouts of really bad spasms in my chest during the day but I know it’s my GI problems as they have got worse. It may have been that in the first place but the early hours is the clue apparently to possibly being heart. My heart is all fine though so no damage!

Glad they’ve got you on hydroxy.

Such a complex condition isn’t it? Happy to hear your heart is good!

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