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DaveT
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Hi Audrey and all, superb news to you and your daughter. The news could not have been better for your daughter, you and your family. Now for us to hope her frecovery comes along nicely as is such a slow process. My eyes have started playing up again, dry, gritty and blurry vision so back on eye drops. It is probably on low…
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Hi Audrey, I too am sorry to hear about your daughters bone marrow biopsy, let us hope the next one is more positive. Like Michelleanne I am praying for you and your daughter. dave
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Hi Helen, many thanks. I hope you do not get flare up to the lungs as I think probably worst place to have it. We are all suffering in our own ways. I hope we all start making progress soon as it mentally helps. I think without noticing physical progress it does affect us in a negative fashion.
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Hi Michelleane, can I ask if you are still on low dose prendisolone, or prednisone which are basically the same thing? As low dose can also affect very much, fatigue, muscle weakness. Mood swings? I am currently on low dose as starting to taper off them and the support groups for prednisone all seem to state the above…
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Hi Helen , Many thanks. Because I am so fatigued and immobile all my days are pyjama days. I was never like this before. It worries me. I hope if I can get off these low dose steroids I will improve a bit. I joined the prednisone uk group and lots of people suffer really badly when on low dose prednisone with fatigue, not…
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Hi Helen, Thanks for looking, I really do appreciate it. These days I seem so fatigued I never seem up to doing much research. I was never like this before. Not sure if is the low dose steroids. I have had a look at your website and tried to input rezurock as well which may help me but it can’t find that either. If I enter…
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Hi All, Thank you all for your conversation and thoughts. I do find all fairly difficult especially not being mobile. My life has always been outdoors, walking, gardening, diy, driving, cooking etc. never been a reader or inside type of person and with this skin scleroderma gvhd my skin is pulled so tight I can hardly walk…
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Hi Tom, Many thanks for your reply. It is really appreciated.
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Hi. Spoke to Tom on patient services hotline at Anthony Nolan. He will try and get update for me on Jakavi and let me know tomorrow.
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I guess nobody from Antony Nolan look at these posts anymore to know how far Anthony Nolan are with thier campaining?
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Hi Audrey, when I left hospital after my transplant I was still losing weight due to my alimentary canal condition after the conditioning chemotherapy and getting mucousitus where you are unfortunately coughing up blood due to ulcers in throat. It takes a very long time for your body to repair this damage from the mouth…
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Has anyone else recently been able to get Ruxolitnib subscribed for chronic gvhd in UK?
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Hi Helen, in uk, or in case where I had my Bmt or sct, they put you on immunosuppressants normally cyclosporine when you are in hospital for the sct and you continue to take them at home for a few months while the graft is given time to establish and give it time to be established and not be attacked by the host. You are…
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If not available soon, can it be purchased privately?
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Hi Audrey, Helen, Michelle and Jan, Audrey it is so good your daughter is doing so well. Look at where she was initially in hospital and now catching viruses and fighting them off. Such great progress and has come so far. We all have to come off the immunosuppressants to make progress and they are not really good for you…
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Hi all, Glad you all seem to be coping ok. Unfortunately I find it all very difficult. I think it is because I am so immobile and spend most of my time sat in front of tv. Like you Helen I feel like the scleroderma gets worse and I still feel so fatigued all the time. I have always been such a fighter to make progress, but…
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Hi Steve, LesleyB, I can remember when I had my bone marrow transplant, when my count was around this level 0.01 it can be the counts are still on the way down rather than the way back up and they allow 0.02 for error as well as around this level the counts are not accurate, and when the levels are around here it can take…
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That is excellent news. I hope she continues to improve.
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Hi Marsha and Steve. I had an sct appx 21 months ago and also had bad mucositus. I left hospital still losing weight as I could keep nothing down. The hospital food I found more terrible than I did before the sct, feeding tubes in my throat made me gag and be sick. I got home and it was hard. No real apetite and all foods…
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Hi all, I am the same vision very very blurry. Can hardly read. Occasional gritty bits in eye, luckily not too dry or painful. More blurry than anything. Otherwise not really any progress. Glad your daughter is home and hope she will strive onwards and upwards.
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Hi Helen, on 8th month currently of Ecp however gone wrong this week. Yesterday transport did not turn up, and today my blood was continually clotting in the tubes so today was a bit of a waste of time as they could not return my cells to me. So far had 33 treatments however not much seems to be improving at the moment so…
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Hi Adelaie, I am sorry to hear this. It is not the best news for you or her. You have to look on the best side they have antibiotics to deal with this. As her immune system has only just started rebuilding itself it may not be strong enough to fight infections off, at least they have the right tools in hospital to deal…
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Hi Adelaie, your daughter is lucky being home so early. I was let home after a month but infection risks are a priority. Your daughter has her old immune system wiped out and now has a new immune system, more new than a young child. Any cold or infection can put her back in hospital if not careful. To start she really…
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Hi adelaie, Definately good news you have noticed your daughter eating a little better, this will hopefully pick her mood up, also energy levels and hopefully health. As they say you are what you eat. The more fresh items the better, but don’t push anything too hard at the moment as I expect her stomach is still fragile.…
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Hi Helen, My journey started January 1st 2021. I had to call an ambulance to my house as I had started to drag my leg around behind me, my left leg and I had problems with going to the toilet in front and behind. I then half a day later became paralysed in legs and arms. It was found I had a secondary cancer on my spine…
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Hi Helen, sorry to hear everything is not so good at the moment. However I know what it is like as I am a lot like that too, as I guess most people get with gvhd as it affects all our quality of life. Eye issues must be a later symptom of gvhd as I like you have recently got eye issues and I notice on forums that eye…
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Hi Adelaie, I am so happy for you and your daughter. She must be doing well. Still early days as you state and her immune system needs to rebuild itself. So best keep away from colds, coughs, pets is always best as well if she can, this will save infections and going back into hospital. Eating for her will also be a…
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Hi Helen, sorry did not reply to you quicker as been feeling a bit down with my situation. Feel slightly better in mind but it may be short lived. A little bit of recovery would perk me up a bit. I know it can often take a long time to see any recovery at all. I know by seeing others posts you can be waiting a long time.…
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Hi Helen, My appetite is like yours it has not returned as of yet. Luckily to a degree in the early days of gvhd when I first started taking steroids I was able to eat more even though it was uncomfortable for my stomach. The uncomfortableness has largely over time disappeared but most of the time I have no want to eat.…
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Hi Helen. so good to hear some progress on the gvhd front it seems rare as we normally have 1 step forward and 4 steps back. I am so happy your gut symptoms have got better. You can eat!! Did it happen suddenly or get better over time? Do you think Ecp helped? I still have appetite issues 19 months out that I still feel a…