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DaveT
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Today, Monday morning I am off for my ECP and often I feel quite tired after it. Let us see how it goes today, and the same tomorrow morning. I think the Ecp has helped keep my gvhd at bay and get my liver function down. As my veins are so bad from the gvhd it is often difficult for the nurses to find a vein and when they…
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Hi Helen, I could not sleep as most nights due to this gvhd, it has really mucked up my time clock. I now seem to spend most of the day in bed as it can be difficult to get motivated. The gvhd has really changed my life as I guess it has yours. With recovering from gvhd and it being about a year and a half since transplant…
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Hi Helen, I get spasms similar to yours now and again but I also had them before Ecp, I don’t think you will find Ecp is causing this it Matt just be as you said it is down to when you are tired or stressed. I also have the big toe nail problem in that I have once lost my big toenails and now they are ridged again ready to…
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Hi Helen. How are you? I hope you are hanging in there as they say. I find it very difficult as progress is either very slow, seems a step backwards or non existent, but remind myself again I have to stay patient. I know it can be difficult when you see gvhd sufferers on the gvhd group who are 6 years out and still with…
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Hi Beaglegirl, As Michelleanne said sometimes they remove your picc line or central line if your blood results show you have infection as sometimes the infection is in the line and it is near on impossible to remove it from the line. I had a few lies replaced for this problem so this is quite common. Also the GCSF…
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Hi Audrey, your daughter is very lucky to be eating a small portion of what you are eating. I can remember when I arrived home After my Bmt I was so fussy after my stomach was damaged so much by the chemo and the mucositus sounds like she is already making good patience. With time things will progress.
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After looking through posts for users having Ecp and stats from patients, it looks like minor benefits to Ecp are seen after a few weeks such as liver acl going down, but bigger changes such as skin tightness seem to happen after six months of continual Ecp treatment. However for some people it can take longer than 6…
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Hi Helen, There is also a Facebook gvhd group as well which is also very helpful and very supportive with thousands of active members who have all suffered a multitude of gvhd issues. Most of the members are from the US and many treatments are only available from there as well. With so many active users in this group it…
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Hi Helen, sounds like you have had a hard tiring day or days with your Ecp. I doubt the Ecp is making your nueropathy or skin worse as really all the Ecp does is calm down your immune system so it is not so over reactive. It may be your body is reacting to the treatment in a positive way and things are starting to wake up.…
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Hi Audrey, as time goes by the gvhd symptoms will hopefully gradually lessen. Hopefully bit by bit her diet will improve as the mouth and throat also improve but it will be slow as the body has so much to repair after the chemotherapy and replacing the immune system with a complete new one. I left hospital losing weight…
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Hi Helen. Thanks for your kind words. I hope others get some help as well from our updates here as well and I hope others will contribute if they wish. Today 2 days after my Ecp I am feeling a bit better and a bit more positive, somebody else with gvhd I met at Ecp this week unfortunately thier gvhd had got worse. Gi gvhd…
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Hi Helen, how is your tight skin scleroderma? And the Ecp sessions going? I on Monday and Tuesday went for my Ecp sessions. I was on my 11th round ie sessions 21 and 22. I did not feel too bad after my sessions but today the day after absolutely worn out with no energy and I feel really rough. I am not I’ll I just think…
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Hi Helen. Hope you are holding up ok. Unfortunately my diet situation / apetite has not changed. Ever since my sct /Bmt when I had mucousitus my desire for food has not returned and I don’t really ever seem to feel hungry. There used to be foods I loved or felt crazy for and now I never get those feelings / desires. We are…
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Looking more into this, and other people’s experiences it looks like in a lot of cases that this can be temporary and can go with time with recovery but looks like it is one of the last things to go as recovery continues. So it is a case of patience again and for each person this time can be different.
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Hi Helen, I also forgot to mention that most persons who have seen the benefits of Ecp for skin gvhd did not seem to start seeing effects until after 6 months Ecp and it was still slow progress after that. I believe for me it helped reduce my liver function alt results. Prednisone helped bring down my gi gvhd where I could…
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Hi Helen. Sorry to hear the gvhd is getting you down, I find it does the same to me. My mood swing is up and down like a yo-yo and I keep thinking there is no end in sight. I too am currently like you I have theses tight bands around my legs from ankles to mid thighs and also around torso and my shoulder. Some days these…
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Hi. As far as I believe and been led to believe by doctors. Your neutrafils only increase when your detects infection in your body so your body produces more to fight the infection.At the moment I can say that mine remain at about 5.1 as I am currently taking steroids which can reduce the neutrafils count a little. When…
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Hi. I was advised by consultants I was best to have any vaccinations when I was not on any imnosuppressants as otherwise my body would not respond as well to the vaccine. So 7 months post sct I had stopped cyclosporine, so I had my flu and 1st covid vaccines together. This caused a good immune response as informed by…
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Hi Helen, I am currently on Ecp for skin as my skin has become very sclerotic due to gvhd, ie it has become very tight in bands above and below the knee making me very inflexible especially walking and now I can only walk like peg leg for a very short time before feeling very fatigued and unstable. I also seem to get…
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Hi. Many thanks for the feedback. Your food / apetite symptoms issues seem the same as mine. I wonder if it was due to the pre-conditioning for the transplant, whether it is the gvhd or the steroids. I think maybe with time some normality will come back when the gvhd all but goes and can stop the steroids to give the…
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Hi Helen, are you saying you had / have the same that 28months on you still have / had no desire to eat and just ate / eat because you have to. ? If your gut recovered how long did it take? I understand it is different to everyone. Do you think after my gvhd goes that my stomach will recover? I do admit that the…
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Hi. I hope you get success with getting ruxolitinib funded by nhs. I have scleradoma of the skin as a symptom of gvhd. My team recommended that it would help and as they applied for it were told it was withdrawn by nhs. To me from all posts I read especially the Facebook gvhd posts from uk and is it looks like the drug has…