I’m new here and was diagnosed with SSc in 2022. I am still waiting for a formal diagnosis for the type I have but due to the strongly positive scl70 bloods I had, I am led to believe it is diffuse.
I know there is no one size fits all for this condition, but I’d be really interested to hear how other peoples conditions developed - did it take months or years, did it start with Raynauds for years and then puffy fingers etc.
Google literally leaves me in tears as it just feels like a death sentence so I’d rather hear from real people who are experiencing it/living with it and any tips/advice you can give will be appreciated.
I have an appt with Prof Denton at the Royal Free in September where I’ll hopefully get some clarity but it feels like an awfully long and lonely time to wait.
Thanks so much!
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Prettyfalcon
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Hii ☺️ I was diagnosed with diffused SS in December 2019 when I was 5 months pregnant. Started out with mainly bad Raynauds. As time as gone on my skin tightness in my hands and stiffness has increased but not majorly. I also have interstitial lung disease which in 5 years has only progressed very slightly ans I am about to start a new medication for this. I know we all do it but please don’t google I done it once and it was awful and most of the time isn’t related to yourseld. It’s such a hard thing to come to terms with…I was 30 and am 35 now….its a huge life change but with the right medication you can lead a normal life bar all the hospital appointments etc 🙈 admittedly somethings are harder especially with stiffer hands but you adjust. There are lots of supplements you can take that help i take around 8 different ones. Professor Denton is amazing such a knowledgable man and the free are very good I am under them and my local rheumatologist. Please reach out to me if you would like some more information or just to talk….such rare disease that you don’t really come across people with it to talk to. Mary xx
Hi mary ... could you let me know which supplements you take ! I take high dose vit D+K2 which I think helps .. newly diagnosed myself at age 50 which started with raynauds and has gotten worse over time with ulcerated finfer tips and stomach issues.. this disease is a minefield with so many different symptoms !
Like you I was diagnosed whilst pregnant at 30, I was convinced thanks to medical journals (I work in healthcare) and google that I wouldn’t live to see my baby start school. Happy to say she’s 21 this year and at university. I’m 52 on my birthday. I still work all be it part time and have a very full life although I do have to plan ahead and pace myself.
Hello just replying while recovering from a major family occasion and was going to post later myself but still a bit out of it. So forgive me if this sounds a little brisk.
Please don’t get too hung up on the distinction between diffuse and limited. I’ve noticed people here say “I have diffuse..” like it’s always a death sentence and see limited as always milder. I do wish the terms could just be abandoned in exchange for all being Systemic Sclerosis - emphasis on which antibody we carry only as this is most predictive I’m told.
Online info on all these sites doesn’t help and even the best resources can be very misleading and well out of date because scleroderma is rare and they always take a long time to get around to updating. For instance even here on SRUK they haven’t anything about Sine scleroderma I don’t think. Always check the year given of last update and focus only on the most recent research results if you want to know more.
Diffuse can sometimes be rapid at first but then slow right down whereas limited can be a slow burner but do just as much harm internally. It is mostly diagnosed by degree of skin involvement. What’s important is the antibody you carry rather than the diffuse v limited label.
Like you I have an antibody that’s most associated with diffuse - only much rarer. Prof Denton told me that in my case it was limited last year but he said it didn’t matter much internally which one and really diffuse is just the amount of skin involvement I have that’s limited.
It’s progresssed very rapidly in my case, mostly in my gut, and my rheumatologist has just communicated with him again to ask something about colorectal GI surgery I’m to have. He replied saying my (U3 RNP) antibody is associated with the most severe GI involvement - (especially lower GI I’ve read) - so this makes sense. He didn’t write limited or diffuse this time just “she has systemic sclerosis with …”.
But if it’s still limited then whoever makes up the rules forgot to tell my gut!!
I hope your September appointment goes well and that you get good advice and support on treatments whatever the outcome.
I am 52 years old, I have had cold hands since childhood, and I have had Raynaud's diagnosis for more than 25 years, which did not particularly bother me. 5 years ago, I noticed that the fingers on my right hand were swelling (a couple of weeks and that's it, they return to their usual shape). In February of this year, the swelling was longer, the other hand began to swell, and I went to the doctor, who shocked me with the diagnosis!
Before that, I considered myself a healthy person, I was on sick leave maybe 15 years ago. I have a constant weight of 47 kg with a height of 162, I look younger than my age, I eat right, because I just don't like all junk food😊 I move a lot, I do exercises regularly! I had very beautiful hands (now they have thickened a little and the rings no longer fall off, but are barely put on).
And here I find out that I have maybe 10-12 years left! Shock and depression! I read everything I could find on the internet about this disease and was SO happy when I saw this association and joined it!
According to the tests, everything is normal, only vitamin D is low and a little osteopania (I don't eat enough, maybe because of this), all indicators of autoimmune factors are zero, only capillaroscopy is bad, the heart, lungs are normal, the stomach has not been checked yet. But small pulling pains appeared in the muscles.
The doctor immediately prescribed vascular drugs and methotrexate. I read the instructions and was shocked, he will just kill me! It may stop the SS, but it destroys the entire body as a whole and will turn my life into existence.
So now I drink only nifedipine and vitamin D with calcium, and listen to my body with fear.
Hello!! And welcome to the forum. You're in a good place here and I think you will find a lot of solace in this community. It's certainly helped me a lot, having been recently diagnosed with diffuse cutaneous systemic sclerosis- and a positive scl70 marker.
First of all, I want you to know that you are under the BEST care with Prof Denton. Please, do note take this for granted. He is the expert in connective tissue diseases and is renown in this field. Let me give you a run down of how my condition has developed to help you.
Jan 2020: removed my myrena coil and shortly after, I developed raynauds on my little finger (maybe there's a link, maybe there's not, I don't know). Over the weeks, the raynauds progressed quite quickly and moved from one white finger to blue hands. It's meant that I needed to find ways to cope. Heated hands warmers, heated insoles, wool socks etc. There's a previous post which helps with raynauds. I will link below.
March 2020: saw my gp and had a full blood test. SCL70 identified and referred to rheumatologist. At that time, from here, I was "lost" in the system (covid etc) and dismissed. The rheumatology nurse i saw said "if you had scleroderma, you would know!" My raynauds still continued progressing and I got puffy hands.
Fast forward, to 2021/2022, and I started charting my symptoms and taking pictures. I started to have skin involvement on my hands. My skin was tighter on my hands, but nothing too noticeable/ worrying. Throughout the time, yes, I did Google, and yes it did tell me that the average life expectancy was 10 years. That got me really down as we were just starting our family at 36. I also decided at that time, to get answers via my private healthcare (via my work). That was a god send and I received an official diagnosis of DSSC with scl70 markers in May 2022. As part of the tests, you do bloods, lung function tests, ct scan, echo and ecg - oh and a skin examination.
Since then, I was transferred back to nhs under prof Denton and started medication. I was put on hydroxychloroquine as I was breastfeeding with the view of stopping bf and starting mycophenolate- which is not compatible with bf (or pregnancy, for that matter!) The hydroxychloroquine made me lose appetite and I didn't have much weight to lose in the first place. Currently I'm 59kg and 173cm - so quite slim.
Now on mycophenolate and any skin involvement I have had, has completely been reversed. Being on mycophenolate now means that you have to be super careful about sun exposure, so I dress with that in mind, and have had to have a complete wardrobe shakeup to be sure. You are at an increased risk of skin cancer. I have had no fibrosis of my internal organs, thankfully and my skin is ALMOST perfect - minus a few things that I notice. Like darkened lips and hands and thinning lips. So my features have changed. But, I'm coming to terms with that too.
I still have raynauds really badly and have asked to be medicated as I want to prevent developing digital ulcers. I now have some pitting scars developed, so i think i have exhausted the non medicated options and accept defeat. 😂 I can't even go into a heated pool and on holiday, I'm more likely to be seen shade- bathing, but that's OK. Hopefully the medication will help.
You haven't said how old you are, but when I saw Denton yesterday, one of the things I wanted to raise was expanding our family. It's difficult because there's a balance between keeping the disease from progressing by staying on mycophenolate "for a few years" and taking a considered risk and going through a managed pregnancy. It's difficult. Very difficult... and I'm still going through the motions. Anyway, whatever I think or feel, I take Dr Denton's medical recommendations as gospel and will be guided by them.
I will share more on managing raynauds below but in the meantime, please do take comfort in knowing you are well looked after. You will go to Clinic 7 and see familiar faces, discuss how your condition has developed with other patients and just feel a general ease with the unknown to come. I'm not saying it's easy, but you're not alone. And despite what Dr Google says... you will get to a point where you don't even bother searching anymore bc you take the facts of your tests and your assessments and move on from there.
Guys, thank you all SO much for your responses. Literally cannot explain how much they have put me at ease already.
Thought it easier to reply like this than individually so I don’t end up repeating myself lots.
I’ve had Raynauds since I was 17 (happened shortly after going on the pill and have always wondered if there was a link) and just coped with it. My hands are very blue most of time and that’s just been my normal. A couple of weeks after my 40th in 2022, I woke up with puffy hands and when the puffiness didn’t go, I went to the doctors. She then spotted my speckled cuticles and ordered the bloods which then confirmed my strongly positive scl70/SSc diagnosis.
I too have been lucky enough to access Prof Denton through private healthcare due to work and you all speak so highly of him so I feel really fortunate. My rheumatology dept at the West Suffolk hospital near where I live have been great but by their own admission, they know very little about the condition.
I have developed a digital ulcer on the same one finger three times and have been give an iloprost infusion three times as a result. It has really helped me to have better winters with the Raynauds and prevented me from getting further DUs. I also take hydroxychloroquine and sildenafil for my hands but I’m not convinced the hydroxy c has done much tbh, other than make me lose some weight! I also have pitting and some odd marks on my finger tips, which are pretty tender most of the time
I’m hoping to be given mycophenolate to prevent further progression. When i requested this at a rheumatology appt, they said no as there is currently no lung involvement (unsure how they know this as I have never had a lung scan?!) but hoping Prof Denton has a ‘prevention is the best cure’ mindset.
I’m going to avoid Dr Google moving forwards - you are right, a lot of the info is out of date or certainly focused on end stage/worst case. It’s very easy for my mind to run away with itself and focus on the short lifespan/absolute doom and this is incredibly hard for me to process, more so with a young family.
Mary - would love to know which supplements you are taking. I practically took out shares in Vitabiotics when I was first diagnosed but after a year, nothing seemed to be making a difference for better or worse so now I only take vit D3 and I try to follow an anti inflammatory diet/exercise quite a bit.
Thank you all again, will deffo keep asking all the questions! ❤️
You are spot on with Denton! He has the prevention is better than cure mindset that should limit the progression of the disease. Ahead of your consultation with him, you will need:CT scan, lung function test, echo, ecg. He will do the skin assessment on the day. Only with those can he make an accurate diagnosis of what's happening in your body and you will get the best outcome/use of his time that way. If you're going private, I would suggest getting those done ASAP as they will forward the results of the tests to Denton and you can work on treatment there. He won't be able to order (and do the tests) at your September consultation. So there will be a delay. These tests need to be done annually or depending on progression, 6 monthly.
For reference, I used Dr Gyatri at the London clinic on harley street. She is an excellent rheumatologist, and she knew right away that the expert in this case was Denton. So i did my tests and was sent on my way to him. All tests etc are done on site or at a hospital local to you. Best to come prepared with all the results so he can make a treatment plan for you then and there. If you have all your results and he form an accurate picture of your disease, its not uncommon to be prescribed medication straight away at the hospital pharmacy.
This is really assuring to hear….i have been diagnosed for 5 years and my most recent lung scan show a slight progression and at first really made me panic so this is really good to hear. I hope you are well x
I think during the time since my diagnosis at least 3 new drugs have become available for treatment of ILD I’m looked after well between the Royal Free, Royal Brompton (lungs) and Birmingham QE. I think now we can expect near normal life expectancy and reasonable health during that time x
Hi, I was diagnosed at 30 whilst pregnant with my second child. Google made me scared I wouldn’t see her start school but happy to report she’s 21 this year and at university. My disease progression has been pretty slow so at nearly 52 I’m still managing to work part time and live a pretty full life. I have to pace myself and plan things ahead but on the whole life is good.
I have had Raynauds since childhood (and both my parents suffered with it too) but when I fell pregnant with my daughter the episodes just went haywire and I developed 3 digital ulcers. Have only had a couple of other ulcers since but I do get chilblains every winter regardless of my shearling lined boots and merino wool socks. It’s a very steep learning curve trying to manage SSc but this community is a great help. Try not to worry too much as stress is an aggravater of autoimmune conditions in general.
This is so comforting to read, thank you for taking the time to reply!
DU’s are awful aren’t they, I’ve never experienced anything so painful. Do you mind me asking what treatments/meds you are on for your Raynauds? I’m going to request Botox for mine as there is more evidence that it has long term benefits,even for secondary Raynauds. It also only seems to affect my hands severely, with my feet just going cold and slightly white. 🤷🏼♀️
I take nifedipine, I dose help and trying to avoid my triggers but living in Scotland it’s hard to avoid the cold damp windy weather 😆 I therefore have about a million sets of hat, gloves and scarves!
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