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Scleroderma & Raynaud's UK (SRUK)

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What causes scleroderma?

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The cause of scleroderma is still unknown, but is known about how a condition develops, as specialist Prof. Chris Denton explains: youtube.com/watch?v=Hilh_oH...

To find out more about disease progression watch Prof Chris Denton's full presentation on the SRUK website: sruk.co.uk/scleroderma/what...

What do you think causes scleroderma?

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22 Replies
gindy profile image
gindy

I think the cause is highly likely to be linked to Raynauds. But that's just mine and my observed in others thoughts.

MEW53 profile image
MEW53 in reply togindy

I have a feeling it could be something to do with chemicals. I worked as a Saturday girl in dry cleaners when I was 16 where perchoathlene was used. Although there was plenty of ventilation, you could still smell it. By the time I was 21 I was diagnosed with Rhematoid Arthritis, but never found in blood tests, but joints were bad. That was 40 years ago and as a youngster I improved, however I was very ill 3 years ago and developed Systemic Sclerosis. I do think there could be a link.

Maharlika profile image
Maharlika in reply toMEW53

Hi MEW

I seem to agree with you. It’s got something to do with chemicals. I never smoke, drink very little, did running and like many of us, tried to look after our selves. I’m 54yo and I did cleaning jobs when I was 40 for 10 yrs. During these years I suffered from terrible reflux & IBS. I quit cleaning when I hit the big 5’0’. Shortly after, I had Raynauds followed by vitiligo. Spring of 2015, I went to a private Rheumy and I was diagnosed with limited scleroderma. My GP then referred me to the NHS consultant and in May 2017, after many blood tests &skin biopsy I was diagnosed with diffuse systemic scleroderma. None of my immediate family members past and present had an auto immune disorder. I can only put it down to the cleaning chemicals that i inhaled and inadvertently touched.

MEW53 profile image
MEW53 in reply toMaharlika

Hi Maharlika,

It very odd sounds strange what you say about chemicals too. Maybe there is something there.

I don’t have any relatives with Scleroderma but have 2 sisters with MS (they’ve had it for over 40 years), another autoimmune disease.

Take care

Maharlika profile image
Maharlika in reply toMEW53

Hi MEW

I honestly believe that chemicals are one or the main contributing factors to my disease and probably to your sisters too. Stay well MEW and hope your sisters are keeping reasonably well x

SWEETpea10 profile image
SWEETpea10 in reply toMaharlika

I was a cleaner using chemicals for 20years I have had raynards for 30 years and systematic scleroderma for 13 years my daughter is a nurse in USA and has helped me a lot in reading about it and finding information I seem to cope quite well the worse symptoms for me is a very dry mouth and eyes and chronic tiredness I was choking on food but I get to know what I can eat and what not I drink water all the time I eat to help food down.

Maharlika profile image
Maharlika in reply toSWEETpea10

Hi Sweetpea

It’s interesting that we have a passing resemblance with our work history; cleaning. I’m pretty sure the chemicals contribute to my disease.

I’m so happy that you’re able to swallow your food now. How are you these days? Are you Still suffering from chronic tiredness? Are you on any meds for ur sclero?

I’m on mycophenolate since October 2017. Recently, i had 2 bronchoscopy and both cell culture results are positive with mycobacterium, similar to TB but not contagious. So i’m on antibiotics for 2 yrs. It’s horrible!!!

Sweetpea hope you stay reasonably well. Keep warm xx

Mylomydog profile image
Mylomydog in reply toSWEETpea10

Hi,i am glad i found someone who has had the same horrific symptoms of choking on food, back in 2014 i phoned the emergency doctors and visit my own gp who were trying to tell me i was only thinking i was unable to swallow food ,i was told by the out of hours gp that i was suffering with anxiety.i was trying to explain to him ofcourse you would suffer from anxiety if the throat muscle is refusing to work and you have food refusing to go down but i suppose they weren't aware i was suffering symptoms of scleroderma but just goes to show how some doctors don't listen to their patients.i also lost 2 stone in weight as i couldn't eat for days at a time but what a very scary thing to go through

Ninag75 profile image
Ninag75 in reply toMEW53

I got it on my arm when I was about four or five it was actually the school who noticed as they thought it was a bad bruise I had on my arm and notified social services as they thought I was being abused at home then mum took me to doctors where it was diagnosed as morphea and at the time they only knew of me and one other person in the hole of Britain who had it.

marilynmcl profile image
marilynmcl in reply togindy

Never had Raynauds in my life before ..now have secondary through having Sys. sclerosis. Never worked with chemicals either....I only became diagnosed with Sys. sclerosis after my second bout of pneumonia and in hospital when a doctor called a rheumatologist in to see if she could shed light on my blood tests...she took a look at my feet...? and nodded knowingly to the doctor who had come with her...then told me she believed I had scleroderma. This was later confirmed after lots of different tests were completed.

Anyway, the only thing that I can think of that may have been the possible cause of my illness was severe stress - the impact on my own health when my husband almost died ...he had been very seriously ill and bed bound for a long period which resulted in his being rushed into hospital with almost complete organ failure...he is fine now, but not long after the relief of his successful treatment and recovery then his coming home a few weeks later ... I slowly started to decline in health with my doctor stumped as to what was going on with my symptoms. There is no-one else in my family who has ever been diagnosed with Sys. sclerosis.

It is a weird illness this Scleroderma that affects us who have it in many different ways ..some of us may have the same symptoms- but not all exactly matching. For example...mine is ..lung damage also swallowing problems - swollen and painful joints. but I have read of so many others on here having lots of other symptoms with skin tightening etc. that I do not have. Can only imagine that it is a mystery as to each individual Sys. sclerosis cause. Very weird!

Kc_1411 profile image
Kc_1411

My partner has scleroderma diagnosed at 12, 7 years later his mother was diagnosed with lupus then later rheumatoid arthritis, this has made me believe it can be passed on in families (maybe not the exact disease but all rheumatoid related). Although no other family history of any kind of these diseases.

Very strange so many different cases

Galwaygirl55 profile image
Galwaygirl55 in reply toKc_1411

I would think all are auto immune related and as far as I know there is no proven cause although many theories. I have my own theory :) I think a virus of some sort gets into the body and hides or masks itself...the immune system is aware of an invader but can't find it so starts to attack the body by mistake. There are many natural herbs etc to help boost the immune system but where a person has auto immune diseases you can't use them as you are boosting a system to attack you. Vicious circle. Sorry for going on with what's prob useless info....but with a huge lack of understanding of about 200 diseases in this umbrella group...it puts a person thinking....there seems to be some hereditary element also. Any thoughts ??????

janetfitz profile image
janetfitz in reply toKc_1411

I have limited scleroderma and raynauds my grandma had MS my niece has Rheumatoid arthritis definitely hereditary.

Deenam profile image
Deenam

I was asked by my doctor if I work with chemicals. Nope! But I was under severe stress and emotional distress for 2 years. I litteraly felt like I was driving on a flat tyre.

Ninag75 profile image
Ninag75

I was always told the cause of morphea ' scleroderma' is the blood tissues are fighting against the muscle tissues and that's what causes the thinning of the skin. Wether this true I still do not know.

SWEETpea10 profile image
SWEETpea10

Hi thanks for reply I think my scleroderma has been a slow one but with age it progress a bit quicker it has affected my heart I get out of breath when walking up hills or steps i am under heart clinic rumatolgy and diagnostic clinic my bowel play up at times this illness does upset life as I have too let friends down occasionally as mornings are my worst , hope your keeping reasonable well .

MEW53 profile image
MEW53 in reply toSWEETpea10

Hi Sweetpea10,

I’ve been fairly stable for about 2 years (Scleroderma & Myositis onset August 2014).

Strangehow a few months ago I found out my heart is skipping beats(ectopics), I had an Ultasound and ECG and the stenographer kept checking I was ok, rang my consultant before she would let me leave.

Saw the Rheumatologist in August, no real worry about it but found out my lungs are only functioning at 70%. I get out of breath more and can’t get up hills. Strange disease I now have severe pain in one of my hips, which makes it difficult to sleep.

Maryie profile image
Maryie

What about breast implants as a possible cause?

Hazel100 profile image
Hazel100

You’re wrong, Prof. If, as the sufferer, we know what causes Scleroderma, we might be able to reverse this. So the question is ‘what causes this?’ not ‘how will this develop?’ I am under the Royal Free and all I know is that I’m dying. However, the consultants haven’t explained to me whether I have primary or secondary, what the prognosis is, what I should eat and avoid...It’s a conveyer belt of a service. If more attention was paid to the patient, then I might be able to understand my symptoms and pain and manage all of my conditions; I have CFS now. So, no, Prof, don’t tell us what the question is; you are the one with the answers and we ask the questions.

Oceangirl profile image
Oceangirl

Live scabies vaccines.

Oceangirl profile image
Oceangirl

I got the live Shingles vaccine right before developing horrible rashes, swollen fingers, finger ulcers, awful stomach pain with reflux, and inflammation, eventually getting a Limited Scleroderma diagnosis. So I think the live shingles vaccination probably was a cause in my case.

janetfitz profile image
janetfitz

I think the cause is linked to anxiety and stress

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