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Vanessa

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Everything posted by Vanessa

  1. Hi Danielle I would like to add my hearty congratulations to all your other well-wishers. And I hope Steve soon feels in better form.
  2. Pressure and pain in ribs and chest

    I am SO sorry to hear that you still have all this frightening stuff going on. I am no medical expert but I think I would keep representing myself at A&E. If you are attending a Sclero specialist hospital maybe you could go to their A&E even if it is not your local one. I hope you find some help. Best wishes Vanessa
  3. Pressure and pain in ribs and chest

    You poor girl. Must have been pretty scary. I dont have any suggestions but I would like to say round of applause to you managing all this and bringing up 3 kids. I am 55 and was diagnosed quite recently and both my girls are at uni, but I have often pondered on how I would have managed had it happened when they were younger. Hats off. Sending you healing vibes and please keep us posted. Vanessa
  4. Bad news...may get worse!

    Hi Amanda, Shes right you know, that Erika, the new frock is a bit statesmanlike and serious. I hope you're not going all "grown up" on us! Big hugs. Vanessa
  5. When I take a deep inbreath it is painfull. I also have a little tickly dry cough. I was awake all last night worrying about this. It could just be that I have caught a little something because my white blood count is low. But is this what lung involvement feels like? Vanessa
  6. Cellcept

    Hi all, I started on Cellcept 500mg morning and night but my WBC dropped too low within 10 days and I was taken off for a week then restarted on just one tablet for a week then, when all was ok, back up to 2 a day. I have been on this dose for 2 weeks and my bloodtest yesterday has shown my wbc to be right back at the lowest allowed point. I am wondering what kind of dose others are on. If I had to go down to, say, just one tablet a day would that be effective. I am reeally hoping that I can tolerate Cellcept as it seems so good. Also, my long awaited and oh so exciting holiday Scandinavian cruise is on the 22nd of this month so I am crossing everything that I get sorted before I go. Vanessa
  7. Cellcept

    Thank you for your feedback on this. Your views are of such value and I really appreciate you. I saw Doctor Ong at the Royal Free and he said that as my skin tightening and thickening is quite rapid - he could see quite a difference since I was there before 6 weeks ago- it was important for me to keep trying with the Cellcept staying on 2 even if my WBC falls a little below the 3.5 reccomended. He then wants me to try and work up to 4 a day but not before I go away on 22nd of this month. Fingers crossed. I do feel quite sickly though. Vanessa
  8. Bad news...may get worse!

    Hi Amanda Just to say I am thinking of you and hope you have some good time this weekend. Best wishes Vanessa
  9. Hi Lil Dee Same as Miocean, my first symptom was pins and needles. I would add that I started doing lots of hand exercises and I do them all the time. Whilst this hasn't helped with swelling I am certain that it has stopped my fingers from curling too much. Good luck Vanessa
  10. My first trip to A&E by ambulance...with sirens!

    Oh Amanda I just can't believe all this shizzle you are going through! Thinking of you girl and sending loving vibes. Vanessa
  11. New kid on the block

    Hi Alison, Good luck with going back to work. It does feel daunting, I am sure, but at the end of the day you can only do what you can do. Good luck on Tuesday. I must add my two pennyworth about The Royal Free. They REALLY know their onions there so it is worth pushing a bit because that was my experience, I had to put my case to get my general practitioner to refer me as he had (and has) very little knowledge of Scleroderma, and could not at first see the benefit of seeking additional expertise apart from the local hospital. He is a very helpful man but did need a bit of convincing. It was well worth it as the RF certainly inspires me with confidence. And of course welcome to the forum. Vanessa
  12. Bad news...may get worse!

    Hi Amanda I am so sorry to hear that you have all this happening. Sending you loving and supportive thoughts. Vanessa
  13. Cellcept

    Hi there I started on Cellcept just over a month ago but had to stop after a couple of weeks because my white blood count went too low. I was off for two weeks and have just started again but just at the lowest dose and hope to increase weekly. The first time around I felt very nauseous but not since restarting. I am very interested about what Jeannie said (taking on an empty stomach) because no one mentioned that to me and it's not on the hospital handout. In fact I keep some plain boiled rice in the fridge which I just mix with a little soya milk and live yogourt and sweetener (very yummy actually) and I have a little dish of that before I take my tablets because I thought it would be better for the tummy. I am taking Nifediprene, Fluoxetone and Cellcept and Lanzoprazole first thing but that is on an empty stomach. Maybe the reccomendations have changed about administration methods. What have others been told? Good luck anyway. Vanessa
  14. wcc3.75 hb 11.43 plt 14

    Hi Lynne Sorry things are still so difficult. I have been having weekly blood tests and experiencing difficulties due to skin thickening (3 stabs yesterday) but then the nurse used a smaller needle which was much better. Maybe worth aking about. Best wishes Vanessa
  15. wcc3.75 hb 11.43 plt 14

    Hi Lynne I am pleased to hear that things are starting to happen! Good luck on the 15th. Vanessa
  16. wcc3.75 hb 11.43 plt 14

    Hi Lynne It seems like you are really in the wars. I hope you manage to get sorted out as soon as possible. Best wishes Vanessa
  17. Newly Diagnosed - Possibly CREST

    Hi Felicia I really agree with all the others on here who are reccomending that you press your doctor to go onto medication. I also think it is really important to find a Sclero specialist. I am not a medic but I hate to think of you fiddling while Rome burns. Keep your chin up and get on the case. Vanessa
  18. What a relief. At last a bit of good news. I love my 2 large cups of Java first thing, but now I don't have to feel so naughty.
  19. Hi

    Hi Kira Nifediprine is indeed a channel blocker but I too have low blood pressure so they started me on the lowest dose for the first month then increased the dose and, touch wood, all seems fine. I think common side effects are headaches, swollen ankles and red face! Luckily I have not had much of all that. The other one I am on which helps with Raynauds is Fluoxetine (Prozac) which is meant to keep a permanent smile on the face. Hmmm not sure... My aspirations for hand modelling have also gone West. I also have an interesting colour spectrum thing going on. Reddish mottling with angry looking white knuckles. But on the upside the backs of my hands are the opposite of Madonna's with not a gnarled vein in sight. As regards looking after my stomach, I had an ulcer some years ago but was still prescribed Diclofenac ( by mistake) for pain and this caused belly problems. I now have a proton pump inhibitor every morning (Lanzoprazole) and don't take Ibuprofen or any painkiller which is hard on the belly. As you can imagine, I rattle when I walk. Oh, and plenty of good hand cream. Best wishes. Vanessa
  20. Hi

    Hi Kira, I would just like to second that. Keeping those hands moving I think is really important. I have Diffuse systemic Scleroderma and you may go no further than Raynauds, but thanks to making a point of keepimg my hands constantly busy with various exersizes when I am able, they are not as bent as I think they might have been. My rheumatologist gave me Nifediprine which also really helped with the coldness. Good luck and stay warm. Vanessa
  21. Advice ?

    Hi Gemma, So sorry to hear you have been having such a tough time. When I first started having symptons (pins and needles numbness, Raynauds, swollen itchy fingers) I made several trips to my general practitioner before being referred to a rheumatologist. He suggested that I may have Limited Scleroderma from symptoms as my blood tests were normal and I found this site where various people stressed the importance of finding a specialist. I managed to get referred to the Royal Free Hospital and had my first appointment at the end of January when the diagnosis was changed to Diffuse and have just had a 5 day instay for tests and an Iloprost infusion. It was really reassuring to be treated in a hospital which is so totally geared up for this uncommon complaint. Good luck with finding help.
  22. Hello, I'm new.

    Hi Lynnie. Welcome to the forum. I was diagnosed with limited scleroderma in November but the diagnosis was changed to diffuse in January. I can really identify with wondering whats coming up next but have to say that as the weeks pass I am definitely feeling less frightened by everything. Also I have a lovely local lady who is in her 80s and has had sclero for over 20 years and whilst her condition is not easy she lives! Guess we just have to try and stay positive.
  23. Have many of you folks noticed skin improvement after having an Iloprost infusion? I am having my first in a couple of weeks and wondered if many people had benifitted in this way. Vanessa
  24. Skin improvement after Iloprost

    Thank you so much for the advice. That is so helpful. Vanessa
  25. Diastolic dysfunction and abnormal pft

    Sorry to hear your news and sending you loving thoughts.
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