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HelenSpeedwell
Comments
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Have you tried a tens machine? It's supposedly often helpful. I take pregabalin for mine and it helps. 75mg a day. Best, Helen
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Hello all I'm here in the clinic, first ecp behind me. It went well. Tomorrow second and then home again. Thanks Dave. Like you, I'm not moving on. Skin, also fascien issues, scleroderma, elefant skin, ulcers that don't heal... hope they don't go into the bone. I wish I could bandage it but it makes it all weep. Barefoot…
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Pleased to hear he got through the sticky patch Beaglegirl. Thanks for keeping us posted. I hope your chest isn't lung gvhd. Dave told me it's the pits. Although till now between skin eye and intestine I find the eye the worst. You're all with me, thank you Love Helen
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Hello all, I'm with you Dave. Me to, stagnating. If only I could get mobile. Ankles +feet still the problem and getting worse. Crossing fingers for your chest infections Michelleanne. So exhausting when you've got no energy anyway. I can't imagine that. I dread lung gvhd. Apparently it's the worst, but I thought eye was…
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Hello all, that's wonderful news about your daughter Auds. Relieved. Michelleanne, I do hope they can deal with your lung problem medically. Thinking of you. Yes,I'm still struggling, i expect dave is too. Patience is our bedrock. And trust. Night night, Love Helen
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Hi Su0906, You'd probably have more luck finding some support if you set up a new thread with appropriate title. Potential support won't read this link. Night night Helen
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Hi Ang13 That sounds like a difficult journey. Stay strong. You're doing well. I had my 2nd sct birthday in june. Time does pass. It's so very hard though. I hope you find suppohere. Love Helen
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Hello Su0906, So very sorry to hear you lost your beautiful boy. Deepest sympathy to you. Love Helen
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Hi Anita, I hope you find some support here. I'd somehow signed myself out and didn't realise, so haven't been around for a few days. Your journey here sounds horrible. What a hero you are and you're still fighting. They've told me being positive increases chances of remission. Keep at it. All the best Helen
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Hello Beaglegirl, Audrey has put it so well. If it helps, feels right, please continue to write. If it doesn't then don't, we understand. We're here. Dave, I hope you're doing ok. Often think of you. I'm seeing Dr tomorrow. Still hoping for skin improvement. Love to all Helen
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Hi Dave, hi all, just got this from facebook. It's clear I've got skin gvhd from this description Dave. I can understand you better too. havea peaceful weekend. I hope you're holding on ok. Love Helen
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Hello Beaglegirl If you read this, know we're with you. You don't need to write, I'm sure you've got enough to do. We understand. Big hug
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Hello Beaglegirl Feel free to keep us posted. I'm thinking of you. Love Helen
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Hi Beaglegirl We're all with you both In this very scary time. Words aren't enough. Dan's sound very sensible though. Love Helen
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Thanks Dave, ive checked out the negative pressure 3M thing with my GP and she carefully listened but thought it not appropriate. To answer your question, I only put the Dexeryl on the hard, thick bits between the wounds. The wounds I'm now covering with dracofoam, it's really expensive, prescribed by the clinic. On top of…
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Keep it up Michelleanne. You're doing a great job. Viral coughs take ages , even for the fittest. I'm sending you a hug from me and the group. Love Helen
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By the way Dave, I've got a new cream that seems to work and it's easy to get online, or maybe even highstreet chemists. It's called Dexeryl. ..company Pierre fabre. I bought it from online chemists. It's about 10£ for a big bottle. I'm with you. Love Helen
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Hello all, It's been a while. How's your chest Michelleanne? I do hope they can help you with it. Auds, sorry to hear you suffer from pain too. Hope you can keep it under control. Howsyour daughter? Beaglegirl, how are you getting on? Have you found anything to help with the wait? Maybe you've already got the results?…
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Hello Dave, You're right to just keep moving. I think that's the most important thing for us. When that goes because of muscle waste then it'll be a very tall order to keep me going. The skin on my feet feels like it's detaching itself from my feet inside, it's buckling. Thankfully my feet are getting strangely numb on…
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Hello All, Maybe this is useful Dave. To be honest, the combi of jakavi and ecp doesn't seem to be a wonder solution for my skin. The ecp is great and I wouldn't be here without jakavi, but they haven't helped my skin. Something from Facebook... "Have they considered belumosudil/Rezurock? My husband was on Jakafi for GVHD…
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Hello all, Thanks for the advice and shared experience with the painkillers. I feel more confident with it now. It's useful to have two sorts. Auds, I can't imagine what you're going through. It must be devastating. We're holding your hand. You're amazingly supportive here, thank you for being yourself with us. Words…
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Thanks Rachel, I'm trying to only take it occasionally. I think it'll be easy for me to get physically addicted because it relaxes me by reducing the pain. I don't get a high, i get a relaxed feeling. The myfortic or jakavi gives me insomnia so it's nice to feel calm. All that said, I'm very sensible, proactive and aware…
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Time to enjoy snuggling up in bed or on the sofa. Hope you can take something for your chest. Holding head over warm water with a towel over my head was good for me. It soothed it. A friend was over today and she caught me feeling really low which was helpful. We had a good chat. Love to all. Helen
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Thank you Michelleanne, How are you? X
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Thanks Dave, it really helps. You understand. Your leg skin problem sounds really horrible. Almost a bit scary. I'm taking opiate based painkiller drops at the moment for the lower leg ankle pain. I only use it when paracetamol isn't enough. Talked it through with my therapist cos I'm cautious about addiction. Hopefully in…
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Hi Dave, Hope you're holding on. I am , just about. Bad week. The cream from the dermatologist has caused serious skin deterioration on my feet. Trust out the window on that one. I'm glad you're there. Love Helen
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Thanks Michelleanne. The therapist was useful. Dave, I read a bit on facebook gvhd skin , people describing what we've got. It was useful. I do now believe we have the same thing... scleroderma? Can't remember what is called. One said ..like a neoprene wet suit one size too small. Mine feels like badly fitted neoprene that…
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Thank you Michelleanne, I slept a lot today which was good and tomorrow I'll see my therapist which will hopefully help. Today, I took my opiate based painkillers so that I could do some housework. It's only the second time but I'm worried about addiction. I think I should be less frightened of it and just accept it. Also…
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Hello all, that's good news about your daughter Audrey. It's such a delicate situation we're all in. Crossing fingers she can keep it up. It's lovely to think of her playing with her boys. They've got their mum back a bit. Unfortunately I was at an appointment today in a clinic not so far away in the black forest. I'd had…
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Hi Tom, yes as Dave said I'm in Germany and on 2x 10mg jakavi daily. Dave like me is suffering particularly with skin gvhd. The doctors here say a combi of jakavi and ecp is the best thing they can offer people like us. Thanks for the info. Keeping fingers crossed for uk decision in the autumn. Best wishes, Helen