I have had trouble for a while, vitilgo, lichen sclerosis, and a recent biopsy confirmed I have lichen sclerosis and morphoea in the same lesion. My dr told me to read up on the condition. I have learnt that scleroderma is a umberella term and there is systemic sclerosis and localised scleroderma. I am really worried about my localised scleroderma turning into the systemic sclerosis, is this something that could potentially happen in the future? Or can I go on to live a full healthy life living with these auto immune diseases on my skin and not develop any systemic involvement?
I had my auto immune bloods done oct 2021 and they was all negative, so my dr when given me my result explained that it is unlikely although not 100% that my auto immunity on my skin is not systemic. I understand no test is 100% certain. But I still can’t help but worry, especially when I will be discharged with no real follow up in the future. How will I know if anything gets worse or I develop anything else auto immune?
The internet is such a scary place 🥺. And I’m feeling overwhelmed and scared at it all. I’m fed up of constantly being passed from pillar to post from dermatologists and gynaecologists, gps and so on.
Any help or advise would be greatly appreciated and I would love to chat to anyone in a similar situation to me.
thank you for reading x
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QueenBee1989
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Lichen Sclerosis was the first autoimmune disease to affect my body.
Its a horrible complaint & made a physical relationship impossible. I had 2 separate operations to aid in this matter.
As far as I know it doesn't mean you will progress to get systemic sclerosis.
I remember my Consultant saying at the time I would be more prone to other auto immune conditions.
I really didn't investigate the potential horrors of other diseases at that time!
In my case 10 years later I did fall victim to Acute Diffuse Systemic Sclerosis triggered by a flu virus.
My Lichen Sclerosis has been under control albeit with some scarring for some time now.
I would discuss your fears with your Consultant as to read the Internet ( as I did also) can be extremely frightening.
The Auto immune world has a wide spectrum & any disease can affect a person in so many different ways.
I often wonder if I had read up about the many possibilities would this knowledge have been any better to know or would I have worried for over 10 years!
Worry & stress can be a trigger too!
As it happened the onset of Systemic Sclerosis for me was very aggressive & luckily I had the treatment I needed very quickly. In other cases as its individual it can fester slowly in the body causing slight changes or damage.
I think to be aware that you may in the future be open to other auto immune conditions can be a good tool if used in the right way.
It's a difficult one as so many different things can act as a trigger. In my case I was ANA posisitive later in my second prognosis, the good sign for you at present is the fact your blood results so far are negative.
Good luck with your journey & I hope Lichen Sclerosis is the only auto immune condition which raises its ugly head for you!
Thank you so much for you’re lovely reply! It really meant a lot. I’m trying to stay positive. I did look into my blood results and my Scl-70 was 0.4 which although in the normal range (0.0-0.9) it felt as though it stood out as all my other antibody tests where less <0.2. Im hoping that I don’t develop anymore antibodies or this doesn’t mean about a potential diagnosis in the future but trying not to think about it too much! Can I ask you how things are with your diffuse scleroderma? Hope everything is going well! X
Hi QueenBee,Firstly you need to talk through your blood results with your Consultant, it's far too technical for us to understand. I tried once with mine using the Internet & its very complex.
My Diffuse Systemic Sclerosis is a very extreme & aggressive type. Please don't read into my story & worry it may happen to you. Each case is individual, this is why it's so difficult to treat & diagnose.
For me I have the worst of the worst but my Consultant has been brilliant all the way.
My journey started in 2017. It progressed so fast, it was like a whirlwind!
I saw my Consultant in the August & by November my skin score had gone to 48 out of 51 (Rodan score). I was in & out of hospital so many times in this period. By the November I could hardly walk & my breathing was affected. I felt like I had a boa constrictor on my arms as they were so tight. The only part of my body not too affected was my back so movement was very difficult.
I had been given Mycrophenolate which normally controls the body. In my case it didn't work!
I had 2 options:
1. Continue on the Mycrophenolate & hope at some stage it would kick in
2. I could be put forward for revolutionary stem cell treatment as the disease was in the early stages & I had no organ damage at that point.
The treatment had been successful on patients with Multiple Sclerosis & it was now being trialled with the very aggressive forms of DSS.
I decided on the second option as I knew I couldn't carry on hoping for the Mycrophenolate to work. I had the risks explained to me of a 10% mortality rate. I turned this around to "OK but I have a 90% chance of survival!"
This is when I started to fight the disease which had chosen me as a host!!
I was referred to Sheffield where I underwent numerous tests to ensure my body would cope with the invasive treatment.
Luckily for me I passed the tests & in 2018 had the Stem Cell Treatment.
Since then it has been a battle. Bit by bit I see improvement. I pushed myself to take gentle exercise to improve the muscle loss.
I've learnt to accept the person I was before will never return. I've learnt to understand my body more & when it tells me to rest, I rest!
The phycological affect of going from a fit & healthy person to the "new me" has been very hard at times. Again I've had support from my Consultant in all manner of ways.
It has changed my whole outlook on life. Each day I wake I aim to enjoy & fill with things I enjoy.
I remain positive as this is a very powerful tool.
I'm human too so there are times I feel down. I pick myself up & concentrate on the now as I & the professionals have no idea what the future holds.
The first few years after the treatment were open to renal failure. I've got through this period & I fight on!
I hope your journey is a lot easier & you can enjoy the things that make you happy. Xxx
Hi Queen BeeI'm sorry you're having such a stressful time, but I know from experience that searching Google is a huge source of anxiety. I have limited systemic sclerosis diagnosed in 2005 but lots of symptoms before that, especially Raynauds, itching all over and morphea. I then developed lichen sclerosis and lots of gastro issues, but my primary diagnosis was the scleraderma from antibody tests. I had gynea tests and treatment and take mycophenolate, immune suppression, for my skin issues and that's all under control. I have lots of help with the gastro problems and despite the symptoms and diagnosis I live a perfectly normal life, as long as I take the meds and follow advice. I'm telling you this so that you can realise that this isn't definitely going to be a terrible situation for you. Lots of people have more problems than me, as I know from this site, but looking into the future with fear and anxiety which saps your joy today won't change anything. Stop looking at worse case scenarios and just focus on what's going on in your body today. Avoid Google. Use the SRUK site. Everyone with this disease is unique, and you haven't even had a diagnosis. Try to focus on the reality of your life and not an imagination and Google induced one! Take care sending loving thoughts.
Thank you so much for your lovely reply, it really meant a lot to me. I still feel a bit overwhelmed and worried. But I am trying to stay positive. Thank you for replying to me x
Hi, from the UK, I was diagnosed at 19 with Raynauds and then diffuse Scleroderma, (im 55 now). Tbh I never really researched the condition, I did join Scleoderma Uk but the brochures they sent were not something I wanted to read or acknowledge at that age. So you could say I ignored the condition for a good few years, yes it did impact on my life but I just carried on. I had not really taken medication for the best part of 20 years, Iloprost being sufficient. I have had digital ulcers on and off in that time, sometimes taking a good while to heal. When I hit 50 I had a heart attack as a result of systemic sclerosis, followed by a triple heart by pass. Today I feel mostly great, medication now, I think, on point. I try to live my life healthily and always keep a positive outlook on life, my mantra is I do everything to help my situation then if anything where to happen in the future, I did everything I could. I appreciate you are younger than me and reading things on the internet can increase anxiety and leave so many questions unanswered, trust me, stress is not good for you.
Try to speak to your specialist as there are varying degrees of diffuse Scleroderma, I count myself lucky as so many other people suffer greatly. Take care and look after yourself. x
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