Can scleroderma get worse: I have... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)
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Can scleroderma get worse


I have localised scleroderma and it’s attacking my skin. What I would like to know is if there’s any way it could get worse and starting on the organs too?

16 Replies

I am currently thinking the same thing.. how are you feeling? Just recently my energy levels have decreased rapidly to the point where I could sit for no more than 5 mins without falling to sleep.. constant exhaustion, muscle and joint aches, headaches, dry mouth and eyes, get the forgets, mood swings, loss of appetite, breakouts.. the list is bloody endless xx

I’m feeling all of that 😫 really suffering with my face too and the redness and rash I seem to be getting all over my stomach and chest! I feel exhausted x

It's such a pain in the ass isn't it.. if your skin feels really dry try taking a bath in coconut oil.. I do this and also apply an intense moisturiser after.. morning routine is a joke 😂😂

I don’t have a bath :( I’m scared to put anything on my face / skinn

Oh 😂 the best thing for me is to stay hydrated!! If I don't moisturiser of drink enough I get super itchy everywhere to point point where I want to just sand paper my skin away

My face is a mess at the moment I don’t know what to do with it! The dermatologist has just told me I need to start the immune suppressors ASAP and stop using creams and ointments but is hard to leave it.

Do what you have been advised hun.. hopefully this new medication you are taking help.. xx

I hope so! But can’t start until I come off the antibiotics I started today 😫 sooo frustrating

How long are your antibiotics? Amoxicillin? 3 or 5 days? Do YOU take them the day after your antibiotics or do you need to wait a day or 2 after for the antibiotics to leave your system?

10 days and phenoxymethyl-penicillin

Oh shit that's a long time.. good luck and I hope it clears pretty fast for you ..

Me too... thanks x

Hey, You sound just like me. Sorry to hear your face is broke out too. My doctor said mine was broken blood vessels😢 They are so ugly and i stay drained. I've yet to get the right meds


Hi Rebecca , everything you have discribed is exactly how I feel at this moment . I was never told this would be such a hard condition my rheumy told me :your lucky it’s not lupus , some days I wonder , I’m just in much pain as lupus patients I’ve talked to and my eyes I swear are changing and they burn I see almost like a curtain of fog in my vision , my forehead is non stop breakouts . I’m no longer a teenager but feel as though I am ! , my tongue gets this sore on the side like I bite it all night . My legs get so itchy I almost raw at time from scratching , my feet ache my headaches are so bad I feel my head will explode I get leaky nose when I bend down and when no headache my head feels full . I’m wondering what have you been given as meds and how long have you been diagnosed . Sorry for long msg ! I’ve been looking for answers and someone to compare with . Thanks !

Hi hun.. I know it's awful I was never told any of this either.. my toes nail came away the other day and I've noticed my hair is getting thinner .. because I have liner morphea scleroderma all my patches are on the left side.. so I was given a 3 day intense steroid drip, that they had to water down because it burnt my veins and then a strong dose of methotrexate .. I was on them for 5 years until I decided to stop taking them myself in 2008 because of the side effects.. I have noticed that my lashes are falling out on my left side too.. I have exactly the same problems at what you have just described.. I'm actually on my way to the doctors now to get a blood test.. I was told that we shoukd be seen at least yearly for check ups.mbi have been back and forth to the doctors but noone would relegate my symptoms to my scleroderma .. until now because I got a bit ratty with them 😂

2009 sorry

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