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DaveT
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Hi Helen, It is good they will add a new immunosuppressant for you. Most of the immunosuppressants are used to stop organ rejection. Jakavi, rezurock, tacralomis, cellcept. Just hope it does not come with bad side effects for you. On another immunosuppressant you have to be very careful about picking up germs from others…
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Hi Helen, Thankyou for being there. It will be good to know one way or the other if I have Myositis or should I say muscle inflamation which may or may not be causing my mobility issues as it needs looking into as this is my main gvhd issue as well as the constant fatigue which never seems to improve it just feels like it…
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Glad you had a good day yesterday you deserve it. Can I get a good day too, as I need it.
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Hi Helen, I did see a new consultant who did believe it possible I might have Myositis. She requested I had blood taken for tests there and then for ck, Myositis screening, iron and calcium. She also examined my legs, condition, strength and range of movement. So I am happy that someone is taking my issues seriously , but…
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Hi Michelle, I am sorry like Helen for the belated birthday wishes. I like Helen am also not too good at the moment. Will try and catch up later. Best wishes to you all.
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Hi all, Hope you are all well. Beaglegirl I hope things are improving / stabilising for your husband. The gvhd road is a long road. Michelle, I too hope your daughter is picking up although I understand from experience the recovery can be very slow. Audrey, I hope you are doing well and making improvement day by day. You…
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Hi Helen, I do hope you are feeling better. It is so hard. Just had my 2 days of Ecp and yesterday did not feel too bad after, today I am not so good and my mood has dropped again. Can barely walk to my kitchen but have to force myself however uncomfortable it may be as I need to eat something as eaten next to nothing…
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Hi Helen, I do really hope it starts to work for you and it helps you make progress. You also needed something to lift your spirits up. Let me know how it goes. I am having a bad day again as I still seem to be making no progress and the skin around my knees seems extra tight today around my knees making it nearly…
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Hi Beaglegirl, sorry you have received this news which could be classed as worrying. Unfortunately when your body goes through so much chemo, drugs ets the bone marrow becomes not such good quality and takes a long time to recover. The more treatments you have the longer it takes to recover. I too had some not so good…
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Hi Helen, Try not to get too low. I know it is easier said than done in our condition. I understand what you say about the wounds and being sceptical. For a wound to heal you want it to scab and the more it is interfered with the more chance for the scam to come off. You also don’t want bits and pieces in there if it is…
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Hi Helen, you state you are waiting for prescription? Is that for Rituximab? I believe I have Myositis and my main issue is I believe because of this bought on by gvhd. Myositis being muscle inflammation and this I believe why muscles are so week and I fatigue so easily. I do believe I also have some skin gvhd but how bad…
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Hi Su0906, I am really happy you have managed to get Rezurock for your Son and I hope he gets improvement really soon, as I know how hard it is to suffer with gvhd as I am still suffering 2 years out from transplant. I would really like to have rezurock to help loosen up my tight skin and give me some mobility back. Since…
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Hi Helen, I am happy that you seem to be recovering after your flare I hope recovery for you continues to happen and you improve. I have to admit I am lucky that I have not seemed to have any flares since about last August when had a liver flare. However in last year and a half I have seen no improvement in my mobility my…
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Hi Audrey, I am afraid I am not too good at the moment as things are not really improving for me and don’t really have seem to for over a year. I am sorry for your daughter having a biopsy tomorrow as I know it is not a very pleasant experience and as she says each one does seem more painful than the last. What makes it…
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Hi Helen, sorry you are suffering so much. We are both suffering so much from this horrible disease. I keep hoping for us both that we are just around the corner from things improving. However with this gvhd it is difficult to know where the corner is. For me I suffer from my immobility and hardly being able to walk, for…
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Hi All, I am still here. Finding it hard as normal and I guess as impatient as ever and hoping for improvement after my last weeks infusion on Wednesday, however really it is too soon for results if I get any improvement at all. It seems such a long road. Hope you are all well. Helen you sound to be having a bit of a hard…
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As normal, I am still struggling. Sounds like you are having a hard time to. I had my Ecp today and will do tomorrow as well. Not really too sure how much it is having on me at the moment, I know it appears to be more of a long term treatment for skin and to keep immune system dampened down to also help reduce the use of…
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Hi Maggiemoo. it seems all stem cell transplant patients are given penicillin tablets for life. I believe it is precautionary in case your body cannot deal with something it catches.
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Hi Helen, Glad to hear from you. Sorry you too have been suffering. I know what it is like not to continue with a normal life. I have been more than two years not been able to walk much and be stuck in bed or an armchair. Most days I cannot stand for more than5 mins asthenosphere skin is so tight around my knees and I just…
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Hi All, Thank you all for your support and wishes. You are all warriors. Audrey for being there for your daughters d trying to understand how she feels and what she is going through. Being there for her and supporting her will mean a lot to her. I don’t know if she is suffering any gvhd at the moment but luckily you are…
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Hi. I am a patient on here so do not say I am an any authority on this. However I can say I have seen posts / updates from parents who have had young children / babies who have gone through stem cell transplants that have been very successful. However every bodies recovery is different and recovery rates are also very…
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Hi Michelle, Many thanks. It is good having something to look forward to that may help me mobilise again. I would much prefer to look forward to a proper holiday but that will have to wait. Long way to go first. Hope you are feeling well today?
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Hi All, Have had my Bmt clinic today and saw consultant. He is trying to arrange Rituximab treatment for next week, so all fingers are crossed.
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Hi Helen, maybe worth seeing if you can get mri to check for Myositis, muscle inflammation.Rspecially if you are making no progress muscle strengthening,, climbing stairs or moving into standing position from sitting.
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Hi all, I think I feel a bit more up set now as been doing a lot of chatting online via Facebook with gvhd suffered with very similar symptoms to me in my legs which is my biggest issue. I believe I may have Myositis which seems a fairly common gvhd symptom. I have a Bmt clinic luckily tomorrow and I am going to see if…
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Hi Michelle, can I ask you said your skin had improved? How was it before? Was it tight? Open wounds? Skin mottling ? and how is it now? I think you are lucky to be nearly three years out as I think time does possibly make the difference. Sorry you are suffering pain and sore eyes. I recently thought I had an eye flare up…
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Hi All, sorry not been on here for a while but have also been finding things difficult. If I found I was genuinely making some little progress and that I would eventually improve I would be more upbeat. For this o am sorry. Helen, I am sorry you are also finding it so difficult, but I know exactly where you are coming…
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Hi Helen, I can understand how frustrated you are! Let us hope they change thier decision and continue with the Ecp especially seeing that skin conditions don’t any change until about a year of Ecp treatments. I have got to admit it is the only time I get a bit of time to speak to anyone.
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Hi all, I understand what it is like to have such bruised arms. It happens to me each time I get Ecp one needle in one arm and one in the other and the old bruises never heal before the new ones start. Do you find your circulation of worse since having a Bmt as I often feel I am cutting off my circulation. Good news Helen…
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Hi all, Audrey, Michelle. Helen, Audrey I guess celebrations are still in order. As well as the good news I hope your daughter has started improving. Has she been diagnosed with gvhd ? Mind you it may be a bit soon. Make sure she is fit and well and not on any immunosuppressants before she has all her lifetime vaccines…