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Scleroderma & Raynaud's UK (SRUK)

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Skin rashes & large blister appearing overnight

tcogb profile image
7 Replies

After recent blood tests and years of various symptoms my GP has finally referred me to the Royal Free (just waiting for appointment to come through) after my Raynaud's has gone into overdrive and the recent blood test results (in conjunction with my clinical symptoms) indicate Mixed Connective Tissue Disease. I went back to my GP in desperation saying I couldn't wait until I got to the Royal Free for help as my Raynaud's is dominating my life (in a bad way) and preventing me from doing so much and I have finally been prescribed Nifedipine to see if it helps. Meanwhile I have been breaking out in hot, angry itchy red lumps on my elbows that died down leaving hot red dry rough patches on both elbows, itchy rash spreading from my wrists up my arms, and then I woke up on Sunday with a red rash on my leg with a huge blister! My GP just says it's better left for the specialist to deal with.

Has anyone else had blisters appear literally overnight? How did your doctor(s) treat this, if you received treatment?

I have no idea until I get to the Royal Free exactly what's going on but my main symptoms are Raynaud's, skin rashes, skin photosensitivity, bowel problems, gastro problems (I have Barrett's Oesophagus), joint pains, feverish, fatigue, sleep problems, mild depression (unsurprsingly!)

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7 Replies

Yes I had blisters upon blisters and then feet turned black through bruising and because they were so swollen lost all my skin on both feet. Again my GP did nothing. :( sorry you seem to have something similar.

zenabb profile image
zenabb

It seems to me that you may have Raynaud's and scleroderma like me. I am glad that you are on nifedipine. How much I wonder. I started on a low dose and gradually increased it. But that only deals with the Raynaud's part. The scleroderma part is not treated and that is why you have all these symptoms. They cannot be cured but can be helped. I hope that you see the rheumatologist soon. They are very busy.

You are right about your depression, it is probably a reactive one due to the circumstances. I find the extreme fatigue the worst feature. It gets better at times.

Join the club.

Good luck.

tinaparkii profile image
tinaparkii

I woke up few week back with blisters on my toes. And itchy dry skin imbetween my toes. So bad they was driving me insane. I just kept smoothering my feet in aquaous cream. Worked wonders. Doctor told me nothing he can do that's why he referred me in the beginning to the raynauds specialist. Terrible to be honest don't think they understand the pain and problems to be honest unless they had it them selves.

tcogb profile image
tcogb

Thnaks for your replies - bit nervous as it was my first question & I'm a newbie on here.

I'm very aware that others like yourselves have far worse symptoms than I currently have which I find both humbling as it stops me feeling sorry for myself as I'm a lot better off than a lot of you but also very scary as it makes me wonder just how much worse this can get!

I've just started on nifedipine (Adalat 5mg) 3 x daily. I took one tablet last night and one this morning and have had two Raynaud's 'attacks' this morning already - I normally have more so it may be helping but too early to say yet.

I have no idea yet if I have any form of scleroderma - I found when I started reading about it, it just freaked me out so I'm trying to wait until I see the specilaist to find out more.

The blister on my leg is still there and just as big but all the red around it has disappeared and at least I haven't had any more come up. I am trying to leave it to go down of its own accord & just putting a bit of Sudocrem on it as I don't want any infection to creep in if it bursts.

I've always been a very active outdoorsy person and have found it very hard to have my life turned upside down and to have to stop doing so many things because it is just too painful so I am hoping at the very least the nifedipine kicks in so I can do some things outside again.

Hi Delazy sorry to read your symptoms.... I have been going to see Prof Denton and his team for 16 years now, so know that you are in safe hands and what they do not know about scleroderma and raynauds is not worth knowing. Have you tried Pawpaw lotion for your blisters ? I have had great results with keeping my calcinosis blisters under control with the lotion, having tried so many different lotions and potions before ! Also have you checked out the RSA website for some really good info ? raynuads.org.uk Good luck, stay positive and keep warm :)

tcogb profile image
tcogb in reply toliving-the-dream-ssc-ray

I do have some Lucas' Paw Paw ointment as we were in Australia early 2012 . Oh how I miss all that wall to wall sunshine :( I use it on my lips and on the newly flaking skin around my nose. I feel like I'm slowly crumbling away sometimes ;) So yes, I could try a bit on the blister site to see if that helps. I was also thinking of pure aloe vera juice/gel. I did smear some Manuka honey on but that didn't seem to improve things and I'd rather eat that anyway!

doretta profile image
doretta

My son suffers from huge blisters that come up over night , mainly on his hands and feet/legs but not necessarily so .For the last 13 years it has been helped by being bled every 3 months . His specialist had thought he had Hemochromatosis [ familial ]. He now thinks he may be wrong and for the last 6 months has been sending him for tests . He's only had 2 as each takes 3 months to get an appointment . Mean-time he's back to the blisters full on . They will not let him have a bleeding while they take forever to do the tests . Apart from the discomfort he gets very fatigued easily. He broke down at the GP's a couple of weeks ago and said he didn't know how much longer he could handle it . He needs help before I lose him . Just searching for answers but thought the Hemochromatosis theory might help someone else .

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