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HelenSpeedwell
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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…
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Hello Beaglegirl, Really sorry to hear this. It must be triggering the traumas from first time around. I don't know what to say here. I can only send you a big hug. Try to get through each day as it comes, stay in the now. I can't imagine how you're coping. It's really strong of you to share here. Do you have good friends?…
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Hello Audrey, Steve, Dave, Adelaie, Michelleanne, Just a quick catch up. Thank you for being there. You strengthen me. I'm off to the clinic tomorrow for my ecp. For my eyes I now have ciclosporin and steroid eye drops. They removed the bandaid/bandsge/protective lenses. When the pain was acute I was prescribed morphine…
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Hello all, hello Adelaie, Wonderful news, free from leukaemia, really lifted me to read it. Yes, Dave, me too, things aee blurry but pain is controlled, Myfortic back doing its work, keeping me awake but thankfully keeping the gvhd at bay it seems. Hopefully your daughter can get a bit of stability going for a while…
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Hi Adelaie. Michelleanne, Auds, dave steve, Sorry, can't read at the moment, eye gvhd. You're all with me thank you. They've put me back on myfortic. Love to all, Helen
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Hi Michelleanne, When was your sct? I'm on antibiotics at the moment, my bowels seem to be unsettled with them. I'm taking them prophylactic after a little biopsy. Looking forward to stopping them. How are you doing? It's good your blood values are stable, but a shame they're not improving. I guess being in the now is all…
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Hi all, Just to follow up.... For the sclerosis I just have to keep moving my ankles and applying lots of moisturising cream every few hours. For the eyes the doctors are not specialised enough and they suggested I go to the eye clinic outpatients in the next few days. I didn't get my lab results as they were still working…
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Sorry to hear that Dave I has the clotting problem too. It went on for months. They usually found a solution but process slowed down. It has got better and I think it's cos the ecp is helping. Have the feelinh the quality of my veins is improving. They say drinking lots of water helps too, but difficult cos they can't…
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Hello, I'm 18months post sct and have chronic gvhd, currently skin and eyes, I'm relieved to say that my cancer related fatigue (CRF) has gone. I still don't have energy or mobility to do much and walking is painful and stairs tortuous... But all that said, I just stumbled on this fitness/exercise for geriatrics in you…