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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 has stabilised the skin or would this have happened anyway? The only way of knowing for sure would be to stop taking the Mycophenolate and see what happens. Obviously I am very reluctant to do this as I don't want either my lungs or my skin to get any worse, My consultant has told me several times that people can just suddenly have spontaneous softening of the skin, so you never know! For my digital ulcers I had Iloprost infusions every 3 months, which again, I find it difficult to say how much it helped or not. It never cured the ulcers and my Raynaud's was always ever present, but I didn't develop any new one. So the only way of knowing again how useful the drug was would have been to stop having the infusions. As a sufferer yourself, knowing how painful digital ulcers can be I did not want to chance it. Once the drug Bosentan became cheaper to prescribe and my consultant was allowed to prescribe it without having to apply for the funding I have been taking this and stopped the Iloprost. My ulcers remain the same, no better, no worse. I am not sure how helpful any of my post will be to you, all I can say is you have nothing to lose by trying the various treatments on offer, just don't expect miracles. Probably the best thing all us affected by Scleroderma can do is to keep a positive attitude and carry on smiling. Anyway enough rambling for, I wish you well and hope that you find a treatment that helps. Happy Holidays to everyone, Helen.
  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 different people respond differently to certain medications. Good Luck, Helen
  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. Take care folks Helen
  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 whatever you decide. :) Regards, Helen.
  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 pain was so indescribable that I got an emergency appointment with my hospital consultant the next day. She immediately admitted me for I.V pain medication, iloprost and I.V. antibiotics. I was assessed by the plastic surgeons twice and fortunately they acted cautiously. After 6 days days of treatment things had improved dramatically, still painful but nothing compared to previously. At the end of last November I could just tell that my finger ulcer was starting with an infection again, so wasted no time in going to the general practitioner and more or less told them that I needed antibiotics. (Oh how scleroderma has improved my confidence and assertiveness). Also I had another iloprost infusion over 3 days and so avoided the awful prospect of that terrible pain again and the potential of losing my fingertip. I will follow this plan of action every time now if I feel there there is any risk to my fingers. I know iloprost is not for everyone but it improves my quality of life immeasurably. I am also firmly in Amanda's camp, where there is no need to suffer unnecessarily, so if you need pain relief then make sure you get it. I hope you continue to make a speedy recovery. Take care, Helen
  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 anything a try that might help to improve my lung function. Hope this is of some use to you, if only to let you know that treatment with cyclophosphamide doesn't mean that your life needs to be on hold at all, in fact nobody believed me when I told them I was having "chemotherapy" as I managed to carry on as normal. Hope your treatment goes well and let us know how you are getting on Regards Helen
  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 there to be any significant improvement but I am so glad that I persevered with the iloprost because now my fingers are the best they have been for years. I still get attacks of the Raynauds every day but my fingers do not break down like they used to. Two of my fingers have permanent sores on them but they are nowhere near as painful as they used to be. Some people are unable to tolerate the iloprost infusions, as I am sure they will tell you, but I have only suffered the odd mild headache. My care team are, however, fantastic and will adjust the speed of the infusion to suit me. I have it over a 24 hour period, causing minimum disruption to family life. It's pretty much trial and error, I think, trying to find a treatment that works for you and that doesn't cause you side effects that are intolerable. Good luck with whatever treatment you decide to try as I know how fed up and desperate I felt at times when my ulcers were really bad. WARM wishes, Helen
  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. I also obtained a very detailed report from my Occupational Health doctor, had the support of my general practitioner and my consultant rheumatologist. Also I had been off work at this time for several weeks due to having had gallstones removed (not related to the sclerosis). I was able to demonstrate how my physical health had improved during this time away from work, partly due to the significantly reduced amount of stress experienced by not having to go work. I was advised to expect an initial refusal of ill health retirement simply because of the government cutbacks and should expect to have to appeal. However, this proved not to be the case and the whole process took just over 3 months (luckily for me my retirement date was given just as my full sick pay was due to end). Getting the actual lump sum and monthly pension payment started and paid into my bank account - well now, thats a completely different story............. Good luck and hope you get what you want and so rightly deserve Helen
  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. rubydoo

    Hair Loss

    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. rubydoo


    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. rubydoo


    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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