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About rubydoo

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  1. Hi Simon, Tight skin has been a significant symptom for me, particularly affecting my face, around my mouth and on my hands - resulting in lovely fat sausages where I once had fingers. Aah, how I miss those fingers and being able to fasten buttons or pick up coins. My sewing days are over, oh wait a minute, I hated sewing anyway, just trying to get a bit of sympathy. It is a really tricky one to answer, Simon, as while I can't say there has been any improvement in how tight my skin now is, it has not got any worse for the last 4 years perhaps. So, does this mean the the Mycophenolate h
  2. Hi Simon, I too underwent the 6 month course of cyclophosphamide treatment approximately 6 years, not long after being diagnosed with diffuse systemic sclerosis. I was also prescribed Mycophenolate for my other symptoms, particularly my very tight skin and had 3 monthly Iloprost infusions for my severe Raynauds. My TCLO function dropped from 57% to 45% and it has hovered around the mid 40s ever since. My consultant says that my lung function is stable so I don't worry about it and the hospital keep a close eye on things. I hope that things improve for you and as Jo demonstrates diffe
  3. Hi Pinetree, So sorry to hear you have had to endure another operation, you're having quite a rough time. Really hope things improve although this may be a slow process. Patience is an absolute necessity for us in the scleroderma club. Amanda I so know what you mean about wanting your medical team to be wonderful. I used to feel this weird need to almost be able to brag to family and friends "oh yes darling. My consultant is absolutely blooming marvellous". Just read your blog the nurse and the cannula - hilarious. It sounds like patience and restraint were required at the time.
  4. Hi Evelynet, I have been taking mycophenolate mofetil for nearly 6 years as I have lung involvement from the scleroderma. I think that I can say now after this length of time that the mycophenolate is helping. I have had 2 short breaks in treatment and during both these periods my skin definitely got tighter and I just started to feel that awful fatigue again. I am not saying my symptoms have improved significantly, my lung function has deteriorated, but I know that I definitely feel worse without it. If you decide to give it a try you can, of course, stop it at any time. Good luck wha
  5. Hi Pinetree, I have come to this conversation a little late in the day but thought I would share my recent experience with you in case it helps in any way. I also suffer from severe Raynaud's for which I am treated with 3 monthly iloprost infusions as oral meds don't help in my case. Anyway, I still get digital ulcers in the winter months but do all the usual stuff recommended to look after my fingers. 12 months one of my ulcers got infected and I had some oral antibiotics which did not improve things, but my general practitioner prescribed another weeks treatment. After a few days the pai
  6. Hi Dorothymay I under went the same treatment of 6 IV cyclophosphamide infusions but mine was over a 6 month period. The only side effect that I experienced was fatigue for a couple of days after the infusion. As I was still working at this time I had the treatment on a Friday and had the weekend to recover. I didn't miss one day of work throughout the whole thing. Unfortunately for me the treatment did not help my lung function, in fact my TLCO dropped from 57% to 46% afterwards but has been stable since then. Even so, I am glad I had the treatment as I was prepared, at the time, to give an
  7. Hi Louise I think that it is just not recommended more often than every 3 months because of potential side effects but not really sure. I get mine on the 3 monthly basis because that is how often I see my specialist - very convenient. I feel that because my fingers are so improved that I don't want to know how they would be if I didn't have the iloprost as regularly, if you see what I mean, and my consultant agrees with this, thankfully.
  8. Hi Louise, Poor you, its not easy having to put up with painful fingertips. I also have had very painful ulcers on my fingers due to severe Raynauds. I have had a multitude of treatments for this. Initially I was prescribed nifedipine and took quite a large dose of this - 20mg three times a day. I also commenced iloprost infusions every 3 months and was also prescribed fluoxetine by my rheumatologist. Around 18 months ago I stopped taking the nifedipine. as I was experiencing some unpleasant side effects, but continued with the iloprost and the fluoxetine. It took at least a year for t
  9. Hi Winnie I retired earlier this year from the NHS and I imagine that teaching has similar retirement policies as as nursing. Buttons has given you excellent advice when she says that you need to show that "all avenues of treatment have been explored". It is also brilliant that you had an assessment by Access To Work and despite their recommendations having been implemented you are still struggling to commit yourself to working 3 days a week. My direct line manager, who was incredibly helpful and understanding, used both of these issues to support my application for ill health retirement.
  10. Hi Jacqueline, I had 6 months of I.V. cyclophosphamide a couple of years ago. I suffered no side effects whatsoever and was very well looked after and made very comfortable throughout the procedures. The anticipation of the treatment is much worse than the real thing so try not to worry too much about it. I found that I could carry on as normal and never missed a days work because of it. Good luck and let us know how you get on. Take care, Helen
  11. Dear Sandy, If I was you I would treat myself to a glorious Marilyn Monroe type wig and pose for the cameras. Hope you have a good weekend and the sun shines on your B-B-Q. Take care, Helen
  12. Hi Amanda, I have had both procedures done and was never told to stop my omeprazole. If gaviscon doesn't help ask hubby to get you some gaviscon advance. I don't know why but in the dim and distant past, pre scleroderma, I had crippling heartburn when I was pregnant. Gaviscon was useless but for some weird reason gaviscon advance worked a treat. It's worth a try anyway. Good luck with the 'oscopies and hope the results come back okay. Take care, Helen.
  13. Hi Clare Yes I don't think you're the only one that had many symptoms before diagnosis but just didn't put two and two together; as Amanda says so many totally unrelated symptoms it's not surprising really. I hope that the insoles give you some relief, anything's worth a try in my opinion. I know several people who do as little ironing as they can get away with but I just can't help feeling like a bad mother if I don't iron the children's clothes. Totally stupid I realise but that's the way it is Good Luck Helen
  14. Dear Sandy I don't believe that I have ever communicated with before now and I am so sorry it is under such difficult circumstances. I hope that you get the opportunities to say everything that you need to to all those who are closest to you whilst you are still able to. Remember that you are not on your final journey alone so surround yourself with the people who matter most to you. My thoughts will be with fondest wishes Helen
  15. Hi Amanda I totally agree that it is quality not quantity and based on this I think I will give anti-inflammatories a try (if I can get general practitioner to prescribe). By the way my rats, Buzz and Woody, are highly offended that you think they are gross. I will upload a picture for you to shriek at when I can work out how to do it. Actually I was bullied into getting them by my kids, we have only had them a few days and I hate the smell already. Oh well, at least they don't snuggle with me at nap time! I will let you know regarding the anti inflammatories. Take care Helen
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