I was diagnosed with diffuse systemic sclerosis earlier this month. I was informed by a 5 minute conversation over the phone, a leaflet in the post and an appointment in March 2018... I naturally assumed this condition wasn't an issue at the time, until I researched!
Now I am left wondering what is next. I have had acute raynauds for about 6 months, but chest pains began in April 2016. I have managed to get an appointment with my Dr brought forward to October, and she has since advised that I will be starting Methotrexate in November.
I manage a busy conservation wildlife park and chair a Hedgehog Hospital charity for sick animals. I also have two energetic rescue dogs and go to the gym (albeit this is a struggle for energy) ... I have been told it is fine to continue to do all these things, including my Everest base camp climb which was planned for 24th October ... but now I just don't know. My partner and I were also planning on starting a family next year.
I feel from what I read I will dead within 5 years - but i'm sure I am just being dramatic!
I have managed to get a private consultation with an expert early November.
Any advice is greatly received ... help!
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Rebecca99
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Hi Rebecca, I was just wondering what your first signs and symptoms were. I'm actually 37 too and I started experiencing extreme hand pain on my left hand in addition to Raynaud's only on my left index finger. Doc immediately said carpal tunnel, had never wear a night brace, and that was that. The night brace completely fixed the hand pain but I continue to have Raynaud's in that left index finger. After googling, which is a no no, I have been worried about this being the start of scleraderma. I had my doc run blood tests and everything came back normal. However, I'm still coming concerned due to my index finger. When you said acute Raynaud's, what exactly did you mean?
Conveniently I had to write my clinical history for a new GP, and am very happy to share this with you:
October 2015: returned from living in a remote Sumatran jungle.
November 2015: heartburn – went away after a month
. March 2016: lump sensation swallowing – assumed smoking issue. GP not worried.
April 2016: chest pains – GP diagnosed as muscle pain from neck. Chest x-ray showed nothing abnormal.
August 2016: allergic reaction to bee sting (first time) and then further reaction to anti-histamine tablet. Shortness of breath and body swelling – went to bed.
Winter 2016: 5 week virus and cough.
February 2017: 2 week virus and cough.
March 2017: Raynaud’s started.
April 2017: 2 week virus and cough.
12th May 2017: allergic reaction to bamboo – body swelling. Hand swelling with rash which did not go down after treatment.
May 2017: Acute pain in both knees when pressure put on them – physio said needed to do more stretches with legs.
June 2017: Hands still swollen. Difficulty climbing mountains in Peru.
Summer 2017: constantly bloated – particularly after food (assumed food types -cut out rice and bread with no difference).
July 2017: Shortness of breath and fatigue climbing 2 UK mountains
August 2017: Virus for 4 days – hyper sensitive to cold.
August 2017: Shortness of breath and muscle fatigue at regular morning gym class.
September 2017: Feet swollen and Raynaud’s noticeable.
Hands no longer swollen but continually aching and hyper-sensitive to cold and touch. Joints in knees hurt, body feels stiff. Most extreme first thing in the morning . Chest pain – on both sides (most significantly right)
Today I have stiff, swollen and hard hands, and it takes a good 10 minutes to be able to walk on my feet in the morning. Though I am still able to put in a 12 hour day at the wildlife park, so it can't be that bad yet
i was diagnosed with diffuse systemic sclerosis a year ago and am still here
My advice would be which i wish i had taken too - is not to search on the internet and stick to this site. Otherwise according to the internet search i should be dead!
Was it a specialist consultant that diagnosed you? They normally have a lengthy conversation with you and give you various options and explain the changes etc. I am sure you will hear from fellow suffers. I am under 3 consultants at the moment and one is a specialist in the diffuse systemic sclerosis based at Salford Hospital - Prof Herrick who reviews me every 3 months. I know a lot of people on this site are with Prof Denton at royal brompton. it took about 2 months for my diagnosis after a short inpatient stay and various tests.
I was hesitant to take an immunesuppresent but opted for myclophenate which i have to say has helped considerably.
The way i see it you can do everything but just different to normal people.
Thank you Naila. I'm still with the early arthritis clinic as this is what they thought it was originally. I am trying to get a referral to a specialist now. I have managed to get a private consult with Prof. Denton late October which I am really pleased to have. The hospital rang yesterday and said there is a cancellation to meet with the nurse to start methotrexate next week! I have taken it as I think it is probably better to be on something then nothing for the moment. Thank you for greeting me. I instantly feel so much better to be part of this community, it can feel very daunting and lonely otherwise
Hi - so sorry this has happened to you. The charity for this condition is SRUK. They have lots of information fact sheets and support groups. You will find them to be helpful.
Im not the most qualified to reply as I dont even know if I have scleroderma yet. Ive recently been diagnosed with two other autoimmune conditions and Im being invsetigated for scleroderma (as have raynaud's, GERD, swollen fingers etc).
Anyway, I wanted to answer and provide some useful info if possible. First, Im very sorry that you got treated in such a perfunctory and unacceptable way by the hospital. I think it is importnat that you get refered to a hospital with a scleroderma specialist unit. I think the Royal Free in London is best if you are within acceptable travelling distance. If your GP says cant refer out of area, point out that they are obliged to if there is no scleroderma specialism in your area. Scleroderma is rare and complex and u must have a specialist.
Second, the prognosis varies enprmously between individuals. There are many on another site who have had diffuse for more than 25 years with little progression in symptoms and have managed to get married, have kids, grand kids (maybe soon great grandkids). Its understanable to be worried but good not to catastrophise if at all possible. Though that is rich coming from me!
Third, and importantly, treatments for scleroderma are improving in leaps and bounds atm. And stem cell therapy now provides long term remission (with no progression of symptoms) for about 70% of those who have it. No one had it long ago enough yet to be able to say whether the remission will be permanent and whether therefore it will be in effect a cure. Also stem cell therapy is getting much safer.
Fourth, do you know what antibodies you tested positive for these. Different anti-bodies predict different symptoms and so indicate different treatments and possible problems to look out for.
Fifth, your work and life sound full and fascinating. If posisble maybe try and carry on with these. Being active is a great treatment in itself. Phsyical exercise can reduce inflammation; though you have to learn your limits.
Sixth, ask scleroderma specialist to do base line tests, like echocardiogram and pulmonary function test.
Seventh, sorry for all the first, second, etc business. Take care and hope things go well for you.
Thank you R. This is absolutely brilliant advice. It now looks like I will be starting methotrexate next week (due to a cancellation) I am going to start this so at least I am on something. I have an appointment with my GP next week, so will request tests for kidneys and lungs etc. I have a private consult with Prof. Denton end of Oct now - so I guess I can start to make a proper plan then. I have also put a request into my GP to be referred to a specialist too
I am very grateful for all the advice on this forum - I feel instantly stronger from being a member.
Thank you for taking the time to reply, I was almost about to start arranging my funeral and writing a will - but I think I might use this time more productively now
Hi Rebecca, I think the most important thing is that you see a Consultant who is a specialist in diffuse Scleroderma. You need to have proper investigations, including specialist bloods, lung function tests and echocardiogram (heart ultrasound). They also need to check kidney function. Only then can someone give you a proper indication of what is going on. It will be important for you to know about your lung and heart function if you are about to embark on a challenge like Everest.
if you are going to start on Methotrexate it is not acceptable to just say you will be starting in a few months time...why the delay? I can't believe that anyone can just provide a diagnosis with no face to face contact and no follow up tests or treatments. You need to be seen, and now, not in March 2018!!! I am really mad on your behalf.
Where are you in the country? Is it Suffolk way? Get yourself into the Royal Free asap, or if that is impossible into Addenbrookes or Norwich.
keeping active is essential, but pushing your body to the absolute limits can flare up conditions like scleroderma so you might need to ease up on some of your more extreme pursuits.
Stick to SRUK sites for information but also remember that although people have 'one' condition, there are many different manifestations under that, so the symptoms will differ, especially the severity of them.
The most important thing...see someone and get a treatment plan.
Thank you so much for this response. My partner will concur, I was referred to Addenbrookes on 28th July for possible early arthritis. I had a whole bunch of bloods taken. 3 weeks later still no results, because apparently there was an error and someone hadn't requested all the tests, so I had to go back to repeat the bloods. Finally 6 weeks later (after a lot of pushing on my side) I eventually got a phone call literally saying that I had this disease and a leaflet and appointment (for march 2018) would be in the post. My partner was livid - bless him.
Luckily I am a very calm and relaxed person
Anyway, since then, we have both done a lot of research and managed to get a private consult with Prof. Denton end of Oct. I have been trying to get in contact with a Dr Frances Hall at Addenbrookes, but so far have not received a reply from her - I shall keep trying. I have also asked my GP if I can have a referral to her - as I got the impression Prof. Denton would only see me as a one off case.
I have literally just received a cancellation appointment to start methotrexate next week. I have taken it as I think it is better to be on something while I work out what is best for me.
I also have an appointment with my GP next week so will ask about the lung, heart etc tests too.
I can't thank everyone enough for their advice on here ... it is so reassuring to have access to this.
I live in Cambridge, if anyone is nearby and ever fancies meeting up.
Hi Rebecca, Frances Hall was the name I had in my mind, but I have never met her. I live just outside of Norwich and had to go up to Addenbrookes to see one of the specialists there when I needed to be on Rituximab, because at the time it was easier than to get it through there than Norwich. But, I have to say I was never that impressed and they just lost me in the system, and forgot to follow me up and I thought, well hey why bother, so I just get all my care from Norwich, and they are very good. I know a couple of people who got referred down to Royal Free, via there GP, and there was talk of me going down there at some point, but I am ticking along and well monitored at Norwich.
See how you go when you have your appointment, but really lung and heart function are routine for scleroderma. Especially when you have been experiencing chest pain. They are not usually the GPs responsibility but the Consultant's. You need to have a routine chest X-ray prior to starting MTX, and up to date blood tests, so they need to sort that out before you start. I hope that the education and support you receive is better this time around.
I will cross everything that it goes well.
Cambridge is an ok train journey from me if you did need an ear.
Hi Rebecca. I'm 36 and was diagnosed with scleroderma (systemic sclerosis) 12 years ago. I've been hospitalised a few times with it, so it has been severe at times. That doesn't mean I'm negative about life - I keep pushing through it all. I will not let this illness define me, I have plenty more I want to do! It's important to keep a positive attitude, but just remember to pace yourself and listen to your body. Take care of yourself.
I too have Diffuse and have done like you and wondered how long I will live. I am thankful for the replies to your post. I was on Plaquenil and am four weeks into CellCept and hoping it helps. I have some lung involvement. You've been given good advice. I am in the US. My doctors are good but I may still go to a Scleroderma center.
I've just been told about positive scl70 and have to wait for next appointment after ECG. I also have sjogrens symptoms very severely. No treatment yet except for extreme dry eyes.
I am starting to feel itchy and tight skin like a band around my body and across my chin.
Does medication slow this?
I've probably read too much on the internet!
Good to hear how other people are managing this somewhat challenging diagnosis!
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