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HelenSpeedwell
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Hello you lot, This is becoming a special place for me. Thank you. Yes, we're heros. Just one thing, I've started a new daily pattern which seems to help. I get up, take all my tablets, eat something... anything, and then I go back to lie down for a few hours. I've started taking paracetamol for the skin/joint/ankle pain,…
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Hello All, What a relief! Your wonderful news has lifted me Auds. I'm still smiling. Thank you for updating us. A big hug to you and your daughter. Dave, Shame about your eyes. Have you g0ot any painkillers that touch it? Morphine didn't help mine but paracetamol is good. I hope you're getting somewhere on your jakavi…
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Hello dear Audrey, we are with you, Big hug, Helen
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Hello Audrey, you're a real warrior yourself. I'm really impressed that your daughter's staying strong, even if only for her boys. She's marvellous. .. and so are you. Thank you for updating us. We're with you, big hug and much love. Helen PS. She's already had her second stem cell, bone marrow, transplant Michelleanne.
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Hello Audrey, I'm thinking of you, sending you a big hug, compassion and love. I can't imagine how you're coping. Words can't help, but I'm holding your hand. Love Helen
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Oh Audrey, I'm with you. This is a terrible time, it begs belief. Sending hugs. Words aren't enough. Love Helen
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Hello Audrey, I got gooseflesh as I read that awful news about your daughter's biopsy. I'm really sorry for you all. A friend of mine had to have a second stem cell transplant for it to work. He's now doing really well 3 years later, much better than me. I'm praying, wishing.... A big virtual hug to you, Helen
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Hi all, was in the clinic this morning. I knew I wasn't balmy when they put me in a wheelchair. It was such a relief. Doctor said my flare up was due to recent infection and they can't do anything. Paracetamol. Happy Easter to you all you wonderful bunch, thank you for being there. Helen
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Hi Dave Glad to hear you've found the prednisone uk group. Here's something from the facebook group from today. I did straight copy and paste. "Jakafi helped me get off steroids for good. I really didn’t notice any side effects. I also had skin and gut gvhd. Also eye and mouth. My gut was the worst. Kept me on steroids…
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It's understandable that you're not in the mood, have the energy to research. We're allowed to feel **** Dave, I was told by ally in the Facebook group that it's ok to be in bed all day and have Pyjama days. Go with it. Don't criticize yourself. This helped me a lot. I'm so critical of myself too. Let's ease up on…
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Hi Dave, I think the ecp improves the quality of the veins. They find it easier with me too. I sing (almost a hum) when they inject a needle. Amazing grace. They really like it, doctors too.. it calms them too. I prepare them and tell them I need to do it so they don't think I'm bonkers. I do it very quietly. The other…
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Justcame across this on gvhd facebook website. It looks good. Seriously reduced med prices. I only searched jakavi and it came up.... not available, notify when available. Best of luck all, Helen
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Thank you very much Michelleanne. The washing machine 'normal' I've heard already, but you made me smile. Unfortunately Dave can't get the meds he desperately needs in his UK health service. This is soo debilitating at the best of times, it must be awful. I have no ideas what he can do. I hope this "frequent hospital stay"…
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Hello Audrey, Oh no... back in again:( Give her our love and best wishes. Unfortunately my gvhd is chronic and so its 'take every day as it comes'. I'm a bit concerned for Dave, he's struggling. I have a cold, cough, headach and the clinic are going to tell me what to do.... they just called back, I need to take a covid…
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That's a relief Dave. Thanks for letting me know. But of course, you need some good news. I'm thinking of you, hoping with you.
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Hi Michelleanne, Lots of mushy things. Finely chopped green leaves with lots of nice dressing, scrambled egg with a dash of cream over it, astronaut drink... but so expensive, bananas, weetabix warmed with milk and mashed up, ice cream. Finely chopped anything with dressing/sauce. I now like banana fritters with honey. Any…
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Hi Dave Call their Hotline. They're doing their best. It's difficult for you to be active when you're suffering so much but stay on it. Maybe there's a study going on that you could join. Anthony nolan will tell you. Best... and love, Helen
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Hi Dave, ...Michelleanne, Audrey, Thanks so much for your update Dave. Just to clarify where I stand with jakavi.... I'm in Germany where jakavi is prescribed by the state health system. I have fortnightly ECP and (immunosuppressive) jakavi 20mg/day. Unfortunately, since my other immunosuppressive medication (myfortic) was…
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Hi all, About the weight, be patient, eat whatever you fancy, just eat, no rules that put you off eating. After nearly 2 years I'm starting to get stable, not yet putting on weight. I too have thyroid problems, interesting. I think there's been a misunderstanding about Dave's meds. In the uk, the health service doesn't pay…
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Hello all, Thank you Michelleanne. It really helps. Im really sorry you cant get the jakavi you need in the uk Dave. Terrible to suffer knowing it's not necessary... although with my chronic gvhd, I'm on jakavi, as well as one other. A Prof in my clinic Zeiser or Zeisser, is doing studies on jakavi alternatives. Maybe you…
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Hi Dave, Just info from my side, but I'm not in the UK. my immunsuppressants are not only jakavi. I also have Myfortic and maybe Cotrim is one too, not sure, and also aciclovir. Maybe you can get them prescribed. I'm thinking of you a lot. Sorry I didn't take your situation seriously. I didn't get it. It's not fair. It…
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Hi Alessandra, I can't imagine what could go wrong apart from getting a follicle infected. Perhaps ask your doc, even though it's banal, self care is important. Helen
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Hi Dave, I hope someone from Anthony Nolan can give you some facts on this. You could contact your mp or set up a crowd funding thing. Or try make contact with someone else who's managed to get it to find out how they did it. I'm really sorry for you. This is awful. If I get any ideas, however wierd or wonderful, I'll let…
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Hello my dear support team :D I was a little concerned to read they're thinking of getting your daughter off the immunosuppressive. They know what they're doing but the recent attempt to get me off one of my two immunosuppressive really backfired and I've since read in the Facebook gvhd group of someone who ended up one…
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Hello Sandra, I'm post menopausal and when my facial hair started getting thicker and darker I went to a beautician for the one and only time in my life. She said to not use bleaches or cut them. She advised me to pluck them with tweezers and now nearly 2 years past sct, 10 years past visit to beautician, I'm grateful. It…
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Hi Dave, (hi Michelleanne and Audrey and Jan3) I'm feeling relatively good cos I just got out of the ecp and it boosts me. The scleroderma is painful and limits my mobility too Dave. It's like having cheese cutting wire tight round my ankles. I've started taking paracetamol for it. I'd like to thank you Dave for being so…
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Hello Audrey, Michelleanne, Dave, I'm in the clinic overnight for the ECP, you have to stay in here in Germany. It went well today. Tomorrow ecp and eye clinic. I can keep my eyes open again and I use artificial tears which are great, ciclosporin and steroid drops. Getting back on the immunosuppressive seems to be the…
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Hello Audrey, Thinking of you and your daughter. I'm imagining you're quiet because you're enjoying a positive time together, a more stable time. I hope so. Hi Michelleanne, I hope you're doing ok too. Riding the waves with trust and self compassion. We're doing really well under terrible conditions. We can be proud of…
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I'd be really interested to find out what helps you fellow long term cgvhd sufferers. Please share anything that you've found useful here. I'm early on on my journey, three years in july. I'd be really grateful.
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Hi Michelleanne, Just a quicky, sorry Steve, I'll read your post later ... 1. Be my own best friend. Talk to myself like I would a good friend. Encouragement and praise. 2. Accept myself as I am. It won't always be like this. My body needs this .. part of recovery. 3. Tai chi beginners you tube. Sitting gymnastics for…