Diffuse scleroderma

[mad4cavs]

I've been told my scleroderma should with treatment be burnt out in 2_3yrs does that mean it goes away, or just hide its ugly head,

[zenabb]

Who told you that?

[mad4cavs in reply to zenabb]

Professor Chris Denton,from the royal free

[Sami13]

I've never heard of systemic sclerosis burning out

[GillSuffolk]

Did your consultant tell you this ? I've never heard of this...

[Hidden]

They do say the first 5 years tends to indicate how it will behave the rest of your life

[marilynmcl]

Maybe for some but when the damage has already had devastating impact on lungs and other body parts I think it is a bit of a pipe dream for me...was told that I will maybe not get worse but the damage done will not get better.

[Hidden]

It all depends upon whether it's systemic or not - if the Consultant has told you it made burn out over time, then he has decided that yours isn't systemic. That is, it is affecting only your skin and not your internal organs. There is still a debate about whether scleroderma is a curve that goes from local, diffuse to systemic or whether some people have a distinct form that will not become systemic. The skin may soften a bit over time.

[mad4cavs in reply to Hidden]

I've been told I have diffuse my digestive system is involved also my lung function comprised ?due to scleroderma or damage from radiotherapy,my consultant has concerns about my renal system and my blood pressure is monitored closely,professor Denton mentioned rna polymerase positive scleroderma,I am going to see my consultant soon and I will ask for her to explain it all to me I have to admit since having a severe reaction to chemotherapy I find many things difficult to take on-board,a true case of chemo brain

[Hidden]

I am really sorry to hear all of that. This question of is it systemic or is it just diffuse scleroderma? seems to bring very different answers from 'it's all the same condition on a cycle' to those who say '2 completely separate conditions.' Add to that your complicating chemotherapy factors and I suspect that even your esteemed consultant can't be certain. Ask about you ANA results if you haven't already. This is about as near as it gets to a definitive diagnosis I think. Good luck.

[mad4cavs in reply to Hidden]

All I know its very painful tiring,and,its changed my appearance along with my post frizzy chemotherapy hair people I've known for decades walk straight past me,

[charlieab in reply to mad4cavs]

Im not even sure what I have yet and my knowledge of sclero is not great. But, as I understand it, both limited and diffuse are systemic i.e. they can affect a range of organs. Its just that limited tends to affect fewer organs.

However, again as I understand it, the potential silver lining with diffuse is that it quite often slows down or in effect goes into remision after about 5 years. And, for some, after five years skin can begin to soften a bit. In this sense, it becomes important to try and limit the damage during the first five years eg through right medications, diet etc.

hope this helps. but, like i say, Im not certain of my facts.

best wishes

[mad4cavs in reply to charlieab]

Thank you that is,very clear and it sounds right at least its a light at the end of the tunnel

[Hidden in reply to mad4cavs]

I don't have Scleroderma but have read same as Charlieab. I have also heard that prof Denton is pretty much the UK authority so hopefully what he advises is pretty reliable. 🤞🏽

[GGhere]

I asked my GP if I would ever get better and if systemic sclerosis is ever cured. His reply was "not usually". I think he was trying to be kind by not giving me a definite 'no'. But who knows - maybe one day they'll come up with a cure.

[kimpush]

it will never leave you it will calm down at times then there many triggers fatigue ,sun,over worked, stress and so on SORRY

[LilaJoe]

I thought if it's diffuse and scl70 then for 3 to 5 years it can get worse ,that defines extent of organ damage, then it kind of burrns out

Are there people on this forum who are scl70 positive and who've had help from medications in those first years to limit organ damage?

I find the uncertainty quite hard...don't feel I'm in the system yet as just had a call from the doctor to say the likelihood is diffuse, now waiting ECG

But it has already affected my breathing and digestion,so am worried it might be the rapid form, hoping not...for everyone,!