Recently diagnosed

[cheryldn]

Hi, I’m 49, soon to be 50 & I never thought my year leading up to this milestone would be like this. I was so looking forward to celebrating it with my family & good friends. Now I feel I’m ageing before my time. After a year of illness & not knowing what was happening to me I am finally being treated for scleroderma. I’ve had so many gp & hospital visits to different depts with blood tests, scans, xrays & trials of medication for certain symptoms giving short term relief before another symptom appears! Two weeks ago I started Prednisolone & Mycophenolate so realise it’s early days. When you find the answer to the problem you research everything that you can find which is not necessarily the best thing to do! Looking ahead I’m worried, frightened & scared what may happen but I’m trying not to dwell too much & try to take each day as it comes. I also have Crohn’s disease diagnosed 29 years ago which had been well controlled but now think is being affected by scleroderma.

[Jen3131]

What is it about milestone birthdays! I was diagnosed when I was 60 although I probably had minor issues previously to be fair. I am now in my 4th year and have been on mycophenolate since January. Take care and try not to get too stressed x

[LucyJean]

Hi Cheryl, so sorry to hear that you have been having such a difficult year. The current situation is only adding to it all I am sure! It might be worth doing a search on this site for other people's posts about being newly diagnosed as there have been lots over the years. That might help to see that you are not alone, we have all been newly diagnosed at some point and know only to well the feeling of dread about what having scleroderma will mean.

We all know that searching the internet is a bad thing to do...but we all do it!! Even the sites with reliable information like sruk.co.uk will scare you silly, because there are quite a list of things that can go wrong and you worry that you will get everything...and quite frankly not live very long! But, many of us on here will tell you that it is not all doom and gloom, and for the majority of people scleroderma is not a death sentence. Even though the internet has you dead and buried within a matter of years!!!

The important thing is to have a good Consultant and health care team who will listen to you, answer your questions and keep on top of your medication regime and investigations. Good monitoring and finding a form of immunosuppression (mycophenalate/prednisolone) that works for you are key.

If you have specific worries or questions...or just want to sound off, then this is the site to do it. Most people are only to quick to come back with really helpful advice and understand completely what you are going through.

Take care

Lucy xx

p.s. Crohns and scleroderma are both autoimmune conditions. The symptoms related to both are about inflammation which is caused when your immune system becomes active and targets your own cells rather than foreign bacteria/viruses etc. When one flares up it is always likely that the other will too.

[cheryldn in reply to LucyJean]

Lucy-Jean thanks for your reply, it’s very reassuring to read. Think I was having a down moment when writing my post. However got to keep my head about this. I do have a great rheumatology consultant & team.

[LucyJean in reply to cheryldn]

Well, I think we all can relate to the emotional rollercoaster that you go on when you have scleroderma. It is normal to have down moments. You don't have to pretend everything is ok or put on a brave face for us here on this site. You feel free to let it all hang out!

Lxxx

[Agedbiker]

Hi Cheryl. I was diagnosed last year on my 51st birthday after spending a week in hospital with double pneumonia. I have scleroderma with pulmonary fibrosis and the usual low motility,reflux issues.

I have been on prednisolone for a year now and I think it has helped. I have just finished a - month cycle of chemotherapy (cyclophosphamide) which has slowed my deterioration right down. I am now on Mychophenalate along with prednisolone, folic acid, B12 and esomeprozole amongst other things. Most things are achievable albeit at a different pace to everyone else, I just had to listen to my body and change my way of thinking. It can be frustrating beyond belief but this this forum and SRUK website are the most reliable sources of information for us Brits. Good luck on your journey.

[GGhere]

Hello Cheryldn

Sorry to hear you are having a worrying time. It's not good when you get an official diagnosis of this strange illness, especially as friends and family have no idea what it's all about. I'm hoping to cheer you up a bit - it took a few years for me to get diagnosed, after endless GP visits with different symptoms. Finally he referred me to hospital and they managed to link everything up and come up with systemic sclerosis involving scleroderma Raynaud's the whole business. That was several years ago and this year I will be 80 and still ticking along. I have kidney, heart, oesophagus, painful joints, all the issues that for some come with the disease. As time goes by you'll understand it more and find what does and what doesn't work for you - diet, medication, etc. Last year I got the double whammy - I was diagnosed with breast cancer - but no operation because of my heart condition. I've just been given cancer inhibitor tablets and I feel now that it's a matter of keeping my fingers crossed. It's all a bit scary but like Lucy Jean said, we can sound off here. I started this message to cheer you up and ended up moaning about myself, so sorry for that. Keep as well as you can and take extra care while this virus is about. xxx

[cheryldn in reply to GGhere]

Thanks for your kind words. Like you say people have no idea what it’s like to have this condition & don’t understand how some days it can be debilitating. I was supposed to be going on holiday to Vietnam with friends to celebrate my upcoming milestone. Even though Coronavirus has put an end to that, I don’t actually think I’d be be well enough to enjoy it. Anyway I’m concentrating on my health now this year & hopefully planning a trip next year.

[marbelina]

Hello cheryldn, I am newly diagnosed too and my first port of call for info was Dr Google, I tell you he is not your friend. Diagnosis for me came at the same time as a heart issue, both scared the bejesus out of me. I had almost picked out my coffin and envisaged a shortened very unpleasant life. Well things have settled somewhat now, ensure you have a rheumatologist you trust, I only listen to him and the good people on this site. Covid-19 has stopped my appointments so I'm in limbo at the moment as my next was to determine any medications, but I'm not too worried about that. I did see my GP about my anxiety which to be honest was the most debilitating aspect following diagnosis, I am now on low dose sertraline which has helped, but the biggest thing that helped was to stop googling, which I found very difficult as I usually like to investigate to the nth degree, I am now very careful about where I look at it just sets off my anxiety. Writing that down makes me feel I am burrying my head in the sand, however it's what I have to do to keep the anxiety away. Take care.

[catkar]

Hi Cher,

I remember only too well when i was diagnosed with Crest 2 year ago at the age of 57... It took a while to digest the information , I was convinced i didn't have many years left and even made my will (not that there's a lot to leave ). Its been a bumpy ride and is still going on with added little extras Sjorgens , which is probably one of the worst things i have ... I have had many sleepless nights in the early days due to anxiety but that has been replaced with sleepless nights due to pins and needles , sore feet, acid reflux, dry mouth and muscle ache...lol .. I have reluctantly accepted it has given me limitations in some respects and i'm not gonna go into my 60's (60 this year) as healthy as i had envisaged... But on the whole things could be a lot worse and who knows i could go into spontaneous remission as could we all.... sending you peace of mind and stress free times ...

Love Cat... x