Gutted :(

My dr doubled my hydroxychloroquine dose to the maximum for my body weight when he told me I had SSd about 10 weeks ago now. This was the midway option we agreed to try before his suggestion of adding mycophenolate (I think I needed time to get my head around that one). In the meantime, my hands massively improved and I have had no fatigue yey! My dr was pleasantly surprised and said let's review again in a few more weeks see how much more improvement we can squeeze out of it. I was pleased as punch, but this last week my hands are swollen like sausages again and the patches of dry cracking skin are increasing and I have a new patch of thickening skin. I know I need to call my dr, I am just having a hard time accepting it all. Plus, the speed it is worsening with max dose hydroxychloroquine has scared me a little. I know he will add myco as well rather than replace it & I'll have to adapt again to account for the weaker immune system (ie go stock up on hand sanitiser and avoid tescos at all costs;)

I guess I just wanted to be afraid and I don't want to scare my family with my fear and this forum is great for that :) and soon I'll have my psychotherapy sessions to work this stuff through with :)

8 Replies

  • I'm sorry you're going through this. I was thinking about you last night and all your sporting achievements as I ran a gorgeous 10k along the coast near where I live. I was pretty pleased as I think I did it in about 1hr04 - a PB!

    To get back to you, I wish I knew what advice to give but I'm only just beginning this journey. I already understand the isolation issues. Even friends who have chronic illnesses themselves have made throw away comments about not being too bad and looking well - all true! But when silly things stop you in your tracks - sometimes literally - it's hard to know who to turn to.

    This forum is great and I really appreciate that it is not full of scaremongering and pity parties. I don't think I could raise the various issues I have had other than here and with the relevant medical people. I hope you start to feel a little more upbeat soon. Have a chat with your family. I'm sure they want to support you and would hate to think you were suffering this alone.

    I hope you enjoy your Saturday. It's a bank holiday here so that means a long weekend for me! Make sure you get outside and do something you enjoy today that lifts your spirits.

  • Bank holiday here too :) yey (where are you?) I am training this morning :) hopefully that will help bring down the sausage fingers a bit.

    I talked to my mum. She said she didn't think a few people understood how serious it was and I said maybe that's ok at this stage. I had a difficult conversation with my sister who had a patch of dry skin and feared she had it too. I had to be kind and patient but it really upset me the rest of the day. I don't need people to understand or comprehend it other than my mum and my bf :) I just have so many questions for my dr - is this fast progression? What am I looking at here? Is he going to do some baseline tests? When I go on mycophenolate will I ever come off it again or is that it? Questions questions. Well done on that time! That's some hard work right there! I used to love the mental freeness of running :)

  • I live near Belfast. I've been out all day at a maritime festival. Lovely day but ended up buying thermal mittens from a Finnish market stall! The wind would have cut you in two! Looked odd but they are toasty...

  • They sound snug! I still drive to work in mittens :)

  • I was given Mycophenolate for my Diffuse Scleroderma and I also thought that I would get every germ going but in fact I hardly have had any kind of illness at all. I have been surprised at this. I don't bother with all the hand wipes unless I go on holiday somewhere and might not be able to wash my hands properly.So I wouldn't be so scared.

  • Thanks Irene that's a real comfort :)

  • Hi hope you are feeling well today. I am 11 years in with ssd. I have been taking mycophenolate for about 18 months now along with prednisilone (steroids) and other stuff too.I am great!!! My lung function has improved at my last lung function test and I am trying to reduce my steroids. I have not had every bug going, intact my general health has been good if you discount the reflux, lung problems and raynoids etc linked with the disease and I have 3 lovely children. One of them is particularly grubby!!! The main thing is to be positive it really is the best medicine. Keep training and look after yourself. My hands did swell up and they are still swollen but they have not become clawed and I now know that is not going to happen. We are not statistics if we beat the odds.

    Take care and lots of love xxxx


  • Thanks H (just seen this) ive started the Myco now and you're right- nothing scary has happened :) looking forward to it kicking in :)