Update on hospital appointment - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

10,799 members5,388 posts

Update on hospital appointment

Kc_1411 profile image
8 Replies

Hey all so my husband attended his appointment was told not to go on any medication as he would just be battaling with side effects. As he has had this illness such a long time he is mananging well himself. To stick with sidenifil when ulcers were bothering him. Unless his organs start to get effected that’s when they will step in. I guess it’s time for me to stop and accept what is happening there truly is nothing that will benifit him.

Thanks for being there when I’m having my melt down guys xxx

Written by
Kc_1411 profile image
Kc_1411
To view profiles and participate in discussions please or .
8 Replies
fairy56 profile image
fairy56

Hi Kc1411, whenever you feel like letting off steam and needing support you know where we are, sending you lots of hugs and remember smile and wave, xx

Hi, that is all very positive - the best thing you can do is keep him relaxed and happy - stress is a known trigger for the disease so that is something within your control somewhat that you might feel better for contributing by working on. Illness makes everyone feel helpless, so anything we can do generally lowers our anxiety.

Kc_1411 profile image
Kc_1411 in reply to

Thanks does this mean he’s in remission? I’ve heard the word but not really known what it means

in reply to Kc_1411

Hi, remission generally means inactive - i think if someone doesn’t have active symptoms and feels generally well, but obviously haven’t “recovered” completely as it’s a lifelong condition it isn’t possible to be cured of.

You should feel very reassured that his doctor doesn’t think medications are required - there’s lots of things you can do to take care of your husband - avoiding the cold and stress as well as considering an autoimmune diet (plenty of info out there - I like the book “the paleo solution” by Robb woolf), making sure he takes care of himself first (eg if he has any fatigue etc) and of course if he has any symptoms to return to his doctor for re-assessing. It’s really not as scary as it seems. There’s lots of information on the SRUK website you can read and just continue to care :) I am sure he is very lucky to have you! Look after yourself too!

Kc_1411 profile image
Kc_1411

Yes your right thank you I think I just panicked seeing him so unwell in this weather, still haven’t heard from the dietian! Plus he has been stressed which has probably made him look tones worse will definitely look in to that book hun thanks for all your support xxx

Intimeslikethese profile image
Intimeslikethese

Many blessings sent your way. He is so blessed to have you. Please take care of yourself and do things that make you both smile and feel good. Just someone gently touching my hand or forearms makes me feel relieved and they don't even know it.🙂

Kc_1411 profile image
Kc_1411 in reply to Intimeslikethese

Thank u so much u too xx

Perhaps his GP might consider Fluoxetine (the old Prozac). For the first time I have grown toenails beyond toes and I wish I could tell you that I feel "happy" as it is an anti-depressant, but mentally I do not feel any different but physically I am much warmer and sometimes don't even wear gloves! I am on 20mg if that helps.

You may also like...

Terrific hospital appointment

hospital today. I wasn't expecting much after the last guy who was not that good. But this lady is...

RECENT HOSPITAL APPOINTMENT

nights, and fingers that will not pick up things!!! Hey if I did not know better I would think I...

Fearful of upcoming routine appointments?

In my GI \\"Constant Contactability.\\" Its that time again to have appointments Lung Function,...

RECENT HOSPITAL APPTS

and feet, oh and a fizzy steroid tablet when I get mouth ulcers!!! Wow am I being spoilt or what,...

My Last Rheumy Appointment

no longer to help for sibo: it was like a miracle when I first started it. I’m now to try...