Newly diagnosed

[lennyplus5]

Hello, I am learning about Scleroderma, ideas what to expect, different types of treatments, how to explain to family members. I have started taking CellCept and see there has been some success but the cases I was reading the individuals were taking CellCept with another medication. If anyone is on the same treatment I would like to hear your outcome. Also, I have tried to explain Scleroderma to family members but they see it as a bad cold someone can't get ride of. If someone has suggestions/input I would appreciate it.

[Psg83]

Hi I'm learning to . So i might not be very helpful but i understand where you are coming from . I was telling my GP how i felt and family . but i looked Ok . So nobody seemed to Hear . But then after a simple blood test ' it all made sense Weakness lack of energy aches and pains . discoloured fingers and so on . Now i take amlodipine and Quinoric . I have also just finished a five day infusion of Flolan . This as all happened in one year . Nobody as explained what it means to me . Just that is Serious . I read SCLERODERMA NEWS online

which i find helpful , I'm in my First year . So i will try and let you know What i learn as it Goes .

So Take Care of Yourself . It's a bit worse than a Cold .

Hope things Start to Make sense .

Pete G

[lennyplus5 in reply to Psg83]

Thank you very much. It is a relief to know that I am not the only one having difficulties explaining to others. I have, also, joined groups on FaceBook in hopes to learn through other's experiences and support as well. Next stop online, Scleroderma News.

Stay warm and hope for long term remission,

Lenny

[Psg83 in reply to lennyplus5]

Hi Lennypluss5 .

This is a Web page that i i have found helpful in explaining what Scleroderma . Can feel like hope this of some use to you

Cheers Pete G

'I can feel my body turning to stone' - BBC News bbc.com/news/uk-england-ber... Former school teacher Jay Virdee has been diagnosed with the rare autoimmune disease scleroderma.

[Maharlika]

Hi Lenny

On May 2017, I was diagnosed with Systemic Scleroderma with skin involvement. I been taking Mycophenolate for 17wks and I find my affected skin is somewhat loose. Its the only meds I’m taking for my disease. My consultant even noticed it when I last saw him in December 2017.

with regards to side effects, I have noticed one or two. But, please don’t compare yourself with others, as we are all different. Others, been taking the meds for far longer than me and have no side effects at all.

Because of the rarity of our disease it’s difficult for others to understand. personally, I try to tell others a little bit about it and I always remind myself that I can still continue living a meaningful & happy life. Lenny, I hope i don’t sound patronising. Surround yourself with positive and empathetic people... xxx

[lennyplus5 in reply to Maharlika]

Thank you, Maharlika. It is good to hear positive results from medication & good advice.

[LucyJean]

Hi there, I would really encourage you to go back through some of the posts on this site that other people in your situation have put on. I know I have replied several times to similar questions for people who are newly diagnosed.

Basically it is a really really challenging time. Sometimes it is helpful to have a diagnosis because it helps to make sense of some of the symptoms you have been experiencing and stops you feeling like you were going mad imagining all these weird things that seemed to be happening to your body. But, Scleroderma is what I refer to as a 'minority sport'. You aren't going to find many people in your local area to chat to or to sympathise with. Unlike conditions like cancer, or MS or any of the other more well-known or publicised diseases if you say to people you have scleroderma they look at you like...what did you say??? And you see there eyes glaze over as you go into your long winded explanation of what it is, and in there minds they are probably starting to think about what they will be having for their tea or what they need to buy from the shops, rather than listening to you. I have had scleroderma since 2004 and there are members of my family and friends who still do not understand what it is. I am done with hitting my head on a brick wall and getting frustrated. I have changed my expectations. I don't expect them to understand. I just tell them what I need and how they can help me...and they prefer it that way because they know where they stand.

When people do ask me about it I say I have scleroderma which is an auto-immune condition. My immune system is very active, against my own body rather than just the bugs in the environment, and that creates problems with (in my case) my skin, joints, heart, lungs and so on. It also makes me feel very tired and my circulation is not very efficient so I am not able to tolerate the cold. I vary the explanation a little bit depending on audience.

I hope that helps a little bit.

Lucy xxx

[lennyplus5 in reply to LucyJean]

Thank you, very well said. Hits home. I might use your explanation a time or two.

Godspeed.

[Jabb-UK]

LucyJean's explanation is excellent. The only thing I can add is that I mention lupus, which most folk seem to know about, and say it is another autoimmune condition where the body's defences are fighting against itself.

[lennyplus5]

Thank you Lucy and Jabb. It is frustrating and hurtful trying to explain to my husband and children and their eyes glazed over. I have found a couple of videos on YouTube and passed that information.

Stay warm and spirits high.

Lenny