Recently diagnosed with systemic scleroderma

[Sus22]

hi I’m new to do anything like this, but have recently been diagnosed with having systemic scleroderma. This was after going to see dermatologist for the patches on skin and thick patches.

I went privately in September after not even receiving appointment through NHS and being told it would be at least a year to see anyone. It’s all come as quite a shock to me, I’ve got a rheumatologist appointment in March next year, but have so many questions, my GP was quite honest and said she’d never heard of systemic scleroderma, so am at a loss who to ask about new things which seem to be going on with me. If anyone has any advice I would be grateful.

[LadyTrundle]

You've done the first good thing, which is come on here! I'm relatively new - 2 years ish. So my next advice would be to go on the SRUK website itself and download their information sheets - start with the introductory ones and ones that seem most relevant to your symptoms. sruk.co.uk/publications/

and

sruk.co.uk/scleroderma/

They also have a YouTube channel youtube.com/wearesruk - if you go on the 'videos' tab there, they have various things including webinars about how to manage different symptoms, etc.

Then come back here with any follow up questions.

By the way, don't feel awkward if you want to print off the publications or send the link to them to your GP - they might be very grateful.

[Sus22 in reply to LadyTrundle]

thanks a lot, yes I will look at all the things you have suggested and take things from there.

[Irishsettermad]

HiI went to see a rheumatologist in Aug and was told I have systemic scleroderma, I had no idea what this was, I done some research and got to understand it better.

I had a ct lung scan and a test to check lung function, I am just waiting for a heart scan. I go back to rheumatology next month were he will look at all the results. Xx

[Sus22 in reply to Irishsettermad]

thanks for replying, it is so encouraging reading peoples comments, and makes me realise I’m not alone with how I feel. Best wishes for your visit. Next month.

[Irishsettermad in reply to Sus22]

Hi how are you getting on? I got my ct lung scan back, looks like it has started affecting my left lung, just waiting to see a chest specalist, started on medication for raynaud's xx

[Sus22 in reply to Irishsettermad]

hi, sorry to hear that, hope the medication may help. I’ve had ongoing struggle with my own GP trying to get referred to specialist. I hade made a appointment to see private Dr at Royal Free 10th January. My appointment to see rheumatologist in March has been cancelled, no explanation why. Managed to speak to locum Dr on Wednesday this week, the next day got a phone call from The Royal Free and now have appointment on 4th January, through NHS. Just want to actually talk to someone about different symptoms that seem to be com8ng out daily. So am very grateful have got this.

[Hidden]

Hello. I was diagnosed about 1 year ago too. I agree with all the advice given by Lady Trundle. I have learned so much more from Face Book groups and SRUK and this group too, than I learned via my GP and Rheumatologist. Theres plenty of information around, but it requires lots of digging around on the internet.

[Sus22 in reply to Hidden]

hi, thanks for your reply, yes I’m beginning to realise how much I’m going to learn from other people on here, it is going to be so helpful. Kind regards

[Fishie1]

So sad that GPs still don't know about SS. Only advice is be careful about Googling as this disease can vary so much from person to person and Google can be very scary. I've got Limited Scleroderma or SS and was diagnosed 15 years ago. Take care!

[Sus22 in reply to Fishie1]

Thankyou for taking the time to reply, it has made me feel better already, knowing I can come on here and just feel supported. Yes you are right about doing too much looking on Google, I have tried to take a step back from it. Kind regards.

[GGhere]

Hello Sus22

I got my diagnosis about 7 years ago and still my GP tells me he knows nothing about it. I'm tempted to tell him to Google it but I don't dare. The best source of information is the SRUK website. I have a copy of all their leaflets which are very informative and help you to understand what's going on. It's all a little scary at first because friends and family have never heard of it and then to top it all the flipping GPs know nothing about it. Not a supportive situation. However, everyone's experience of the disease is different because the various elements of it are not set in stone - some have the various symptoms more and some less than others. I'm 82 and still plodding along with good days and bad days. Don't despair things will improve as you get all the various appointments - the current Covid thing has upset the apple cart regarding appointments. Very best wishes.

[Sus22 in reply to GGhere]

Thankyou, it certainly is making me feel better about finding things out after reading your comments. I will take things on board. Kind regards.

[StormySky]

Hi Sus22, I am sorry you are having problems and hope that you will find your upcoming appointment helpful. The long waits in the NHS can be so anxiety-provoking. I hope all goes well with your appointment on the 4th.

Irishsettermad I'm so sorry it's been found in your lungs and hope the medication helps.

Sus22 I notice you had a private appointment at the Royal Free and now have an NHS appointment with them. Did you need a referral from a GP for the private appointment, or did Royal Free say you had to get NHS referral for them to help you? I have had a lot of problems with my hands over the last couple years and would really like to see someone who might be able to help (I know my blood test 18 months ago showed inflammatory markers, raised ANA and PM-Scl). I did try to go to someone private as I'm so fed up of being in pain and struggling to function. That private rheumatologist said they wanted to do some tests and should be able to find a suitable treatment, but I would have to be referred to him by my GP for him to help me further. My GP said I don't need a referral as I am already under the local service that found the antibodies (that service have left it open for me to contact them if I want to start methotrexate as that is the only thing they can offer. However, the A+E doctor said not to take that medication as I am allergic to it).

[Runningblind]

get the damn thing early before it gets bad. This seems like the best option. I’m trying to get it myself and have read some good results

youtu.be/iWT0oW8FRdE(Not working as expected?)