Is there an end to this?ndition?

I've had scleroderma with lung fibrosis and raynaulds for 14 years now. I've managed to get on with life and my condition has been monitored and stabilised for most of that time. For the last 4/5 months I have been more and more breathless, extremely fatigued and struggling more than ever before. Lots of chest infections etc. I have hardly been out since Christmas as I find getting ready and out walking so difficult. Is this a bad flare up of my condition? It's never been this bad before. Anyone else experienced this? I have asked to be referred back to Royal free, but awaiting appointment.

13 Replies

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  • You need an appointment soon.

  • I think so to. Just hoping they are not long in giving me one. Feel a bit at a loss at the moment.

  • I can understand that but I can't diagnose you. Scleroderma does all sorts of things mostly cyclically.

  • I can understand that, But I can't diagnose you. Scleroderma does all sorts of things mostly cyclically.

  • Sorry I am unable to answer your question but just hope you get an appointment very soon. In the meantime I am sending you lots of love and healing thoughts and just know that lots of people are thinking of you and praying that you see someone soon and get some answers. Xxx

  • Thank you so much .

  • Go back to see doctor for update on your condition. I am the same as yourself just now but have been put onto new medication so will wait and see how I go..not much improvement so far but early days...my consultant rheumy has told me that good results with this medication has been given for Systemic Sclerosis so am hoping that I will be a lot better soon. The tablets are called-Mycophenolate Mofetil. Hope you have better days soon.

  • I am already on Mycophenolate, don't know if they can up the dose or not. Thanks for your reply, hope you feel better soon too.

  • I am, just now, on two a day then next week 3 -following week 4 a day...you have to up them gradually I was told. I also have to have blood tests and urine tests regularly too at my doctors surgery. I have a sheet of information and a letter to take every time I go for these tests that the nurse has to check. Just started on this med. last week so early days for improvements. Keep better pet.

  • Thank you x

  • Hi im also having short off brathnlas I can't take out biggest brath and my chest always have dry cuffs and sticky and gluey saliva- and asopagos also very dry and cuff can't take it out or take in ! I Ben compelling GP and Royal free since long time ! I attended last week Apointmant and I'm going to have chest tast and Brithnlassnas tast add Royal dr prescribed some Madison which I can't take from Royal free chemist so I ask Royal free dr to give this prescriptions for my GP to prescribe for me so Royal free dr hand it to me so I contact my GP and handover my prescription but he said I can't give you now I need to first investigation with this meditation ! So well it's nearly 10 days today still not received any answers from GP or any mediation ! Now I try to ring comings Monday and see what happens. So thanks all my friends to read my comments...

  • Hi! I was diagnosed about 19 years ago (1997) and have had times when severe chest tightness has inhibited my breathing and I have become very tired. I can only recommend pacing yourself and being realistic about tasks you can undertake safely and within reason. Do however seek medical advice....in case it is a worsening of your symptoms that can be rectified with correct medication.... Fran xxxxx

  • Thank you Fran. Am currently taking everything easy and just hoping I get my appointment soon. X

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