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HelenSpeedwell
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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
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Forgot to tell you Dave, I called novartis yesterday to find out if they have a patient support scheme for jakavi like johnson and Johnson have for some meds.. It was worth a try, but , no, nothing. Thinking of you Helen
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Thanks Dave. Relieved to get the ok on the coffee. Do they give you restrictions before your ecp on what can can't eat? I don't have any but saw in facebook group quite often no fatty foods and drink lots before. Love Helen
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Let's hope after 2 years it can still make an impact. Worth a try.
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How's your daughter Audrey?
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Hi Dave, The new med is called Sandimmun. I'll check the active ingredient. You're doing all you can. Be kind to yourself. Positivity is really important. Do you have a therapist or someone at the clinic you can talk to? Helen
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Hello all, Yes, Michelleanne, I've got a good therapist. I couldn't have got through it without. In the clinic I saw someone too, onlx 3 times in 8 months but extremely helpful. I've been prescribed more immune suppressants, I'm hoping they'll make a difference, a big difference. They'll bring with them their own side…
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Hi Dave, Got back today from the clinic. They weren't satisfied with the situation and have added an immunsuppressant. I'll let you know what it's called. It's for transplant patients against rejection. Makes sense. Hope you're holding on ok. I'm with you. Love Helen
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Hi Dave, I'm just waiting to get into the ecp department. Since I got myself to eat more, ... remember the pot noodles:), the fatigue seems to have very very very slowly got better. I had an app 'untire' that helped too, although we neither of us have cancer, cancer free, but it's for cancer related fatigue. But I think…
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Hi Dave Maybe I could bring the cuppa over to you if that'd be easier. I'm relieved to hear she took you seriously and is doing something about it. That's good to hear. Love Helen
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I had a good day yesterday. Hoping today is too. Love and thanks to you all. Helen
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Hi Dave I wonder what your consultant said apart from be patient. I'm with you very often. Sending kind energy and getting the kettle on. Love Helen
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Happy birthday yesterday Michelleanne! Not doing so well at the moment. Took painkillers so I slept better last night. It is as it is. I just keep going. Love to you all, Helen
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Hi Dave, Just a quicky, I'm having a bad phase too. Good to know you understand. I'm sending you kindness. Love Helen
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Hi Dave, At last I've got the ointment that the dermatologist prescribed for the "hard sclerodermiform sheets of skin " Instructions.. translated, "only for use on targetted, localised, not open, skin. Not big skin surface. " It's called ... Dimethylium sulfoxidatum diclofenac Natrium carbomer 50,000. Unguentum basale dac.…
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Hi Dave, I won't get rituximab. I trust my team with that. The dermatologist doesn't belong to my sct team thank goodness. I just can't get an appointment with another dermatologist practice so she comes to me when it's aaabsolutely necessary. I won't bother again. She's based in the university dermatology department. I've…
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Hi Beaglegirl It is such a tortuous journey we're all on. You are being very strong, and feeling that "I am not strong" belongs to it. You are! I'm glad Dave has been able to give you some input about values. Try to work out how you can help yourself, in any way, shape or form, get through the 4 weeks. It's a mammoth task,…