Many thanks for being there too. For both of us and other sufferers of gvhd it is very isolating to protect ourselves from further gvhd flare ups. I am still suffering from my initial flare up, luckily the gi and mouth gvhd has died down but I am still left with my immobility at the moment. As you I am also suffering from the isolation which gives a great deal of psychological and mental scarring. Without being able to really do anything I don’t really achieve anything and this it makes me feel quite useless. All I can try and do is push myself a bit to improve but that often seems sometimes so difficult. I hope your symptoms have not got worse since not having your Ecp this week. I am on Monday and Tuesday having my sessions with a lot of travelling so will be quite worn out from it. Have a good weekend.
Thanks. I find knowing when to 'push myself' or just go easy and be kind to myself a difficult line. Thank god I have recently got a therapist paid for by the health service who seems to be taking me seriously. He's not very experienced and doesn't do much, but I make the most of it and try to see it as a win.
When you say emotional scarring, you're probably right but I can't cope with the negative take on it and prefer to tell myself 'in my stronger moments' that it's ok. I don't think I would be here without having discovered a concept .. there's lots on it in the Internet, on 'self compassion' practice. It's the practice of talking to myself like I'm my best friend and acceptance. Sounds aesoteric and a bit wierd but it works (also statistically proven). It's not for serious illness, it's for everyone.
Kristin neff is a leading researcher in the field (on you tube- check out , the difference between self esteem and self compassion) . I could post a link if you're interested, let me know.
"Center for mindful self compassion" the online website with free resources to download. I'm on their emailing list for free resources and online seminars.
I also found free online courses helpful...on learning platform 'future learn' , for example , on mindfulness. Learning in itself is proven to ease stress.
My 8 months horizontal in the hospital were made bearable with that, it was also helpful that a wasn't really mentally present for a long time. I think I cope with the scarring with gaps in my memory. My brain's way to protect itself.
A therapist in the clinic was helpful when she told me I'm not living in my old Film. It's weird but I found this liberating.
I'm thinking of you with your ecp and travelling monday, tuesday Dave. I have to wait another week.. the following Monday Tuesday.
Tuesday today, I'm thinking of you on your long trips and wearing treatment. Hope it brings you a plus, even if only in the long run. Does someone drive you?
I'm not doing well myself, emotionally low and physically missing the ecp... flakey ankles are painful so not sleeping well.
I can't get out at all cos it's icy. Not even stand on the doorstep. I'm really lonely. At least my ecp gets me out and I see other people.
sorry I did not respond sooner but after my 2 days Ecp treatment I felt absolutely worn out and spent yesterday afternoon sleeping. I spoke to another patient who was also having Ecp and they also said they also felt very tired after Ecp and also they are on high steroids so they also said they are not sleeping due to the steroid affect keeping them awake. They also did not look too good. As you say by going to Ecp is a way to see a few people and to feel a little bit normal. I am 100% at home except for Ecp. Like you is causing my life to be on hold and yes it is very lonely place to be. After my Ecp my legs felt tighter as though things had got worse but I think it is due to tiredness it makes it feel worse, just need to wait a few days to see if things improve. However it will be slow! I travel to Ecp with hospital transport ie a like minibus as I am so unstable walking due to the scleradoma I have to travel in a wheelchair. At home I can walk around from lounge to kitchen and I can just bend enough to slowly pull myself upstairs but it is not easy. Before the gvhd I could go up 2 steps at a time now I can only go up 1 at a time but cannot carry anything as I have to hold on and pull with both hands. I am just waiting and hoping for the Ecp to start working to start to give me more mobility to give me more positivity. Some days it is very difficult to get motivated enough to get out of bed, but know if I don’t keep the muscles moving s bit I know I will not improve in the long run. This week my second Ecp treatment was going to fail as the machine alarmed half way through but turned out the centrifuge bowl had filled up with too much blood and the machine needed resetting to drain some blood out the centrifuge. I hope your mood picks up a bit as I know how much this gvhd can get a person down. I know when you are not in direct contact with another sufferer you believe you are the only person with issues, we are not as we have seen by the forums. We just have to be patient and slowly hopefully we will see progress.
I hope Ecp helps with ocular chronic gvhd as my eyes have recently become a bit dry and gritty. I am now using eye drops which does ease the eyes for now. Luckily it is not unbearable.
Thanks for getting back Dave. I'm pleased your transport is part of the ecp treatment deal. Sounds well organised. Glad you are being kind to yourself too, that gives me a clear message about myself. I'm finding after midday is when my day starts and at the moment I'm just trying to accept it which is difficult. I spend the morning in bed after tablets and eating a bit.
The only way for me is to be in the now, not yesterday or tomorrow.
Sorry to hear you've gone from good on the stairs to struggling again. It's really not easy, I'm getting worse but have a little lightweight cloth rucksack. Going down is painful.
I just can't imagine how I'll be mentally in ten years if this stays. Social isolation and immobile. I read that 42% of 'chronic gvhd ers' manage 10 years after bmt.
Hi Helen. Hope the Ecp went ahead for you yesterday and today. I know when you are doing something like Ecp for gvhd it helps give more positivity as you feel like you are doing something to help resolve it. I have kept a bit away from forums this week as too much over reading into peoples issues with gvhd also gets me down sometimes. I want to help with the experience I have with some issues but I don’t want it to have a negative impact on me. I hope you start to soon see the benefits of Ecp if you have not already. Unfortunately I have not really seen any change yet except for more positive liver function. I keep holding out hope.
I feel just the same about portioning my access to the different gvhd forums. It impacts me too.
I'm lying here and need to sleep for a very early eyeclinic appointment tomorrow , but cant cos of the skin ankle sclerosis gvhd. Painful, and the gvhd seems to make it more painful, but i think the ecp does help me somehow. Cant put mx finger on it though.
It went fine, the machine only stopped once or twice. The ward was warm too. Nice late appointment this morning too.
Hope you are fine. No real changes in me since our last communication. I guess you had Ecp yesterday and today and are probably quite tired from it as I also seem to be after treatment. My sclerosis of my legs with tight skin does not seem to have changed or reduced yet as I still find mobility so hard due to the stiffness it gives me. My eyes seem a little dry at times and my eyes get a little blurry but is luckily not serious yet. Other than these gvhd symptoms luckily my bloods have been quite good and stable, however the gvhd symptoms I have are bad enough to me as they have taken away my independence and tire so much that I also never seem to much energy to do anything. It is always so very difficult to be patient but I know I must for the end result. I hope your ankle is improving or at least not getting worse.
can I ask, when you had Ecp did you have scleradoma ie tight skin, and if so how bad? Or was most of your gvhd skin issues in dermis ie skin pigmentation issues and subdermis ie skin sensory issues and sweating issues? After what sort of time period of Ecp did you start to see improvements? I do understand everybody’s relation to Ecp is different to Ecp with different timescales if any change at all.
Most of my issues with GvHD was dryness and flakyness of my skin which was incredibly itchy and uncomfortable. It was also reddened and inflamed in places, particularly around my neck and eyes. I can't remember it being tight particularly. I'd lost so much weight that I think my skin was a little looser than it had been. I guess the joints around my knees and elbows felt a bit tighter if anything.
The other effect (though I'm not sure it was GvHD or general recovery) was that I felt cold most of the time, even when everyone else in the house was feeling hot.
ECP was a slow process and frequency initially was fortnightly I think. There was an initial improvement in the first three months which gave them confidence to continue. The most noticable improvement for me was that the dryness of my skin improved as that was the most debilitating effect. At one point the frequency of treatment was reduced in conjunction with stepping back my Ciclosporin which allowed the GvHD to flare up again slightly, so the frequency and Ciclosporin were put back to the previous and reduced slowly later.
Just a quicky, my skin on my ankles is very tight, skin breaks and hurts, is very thick and flakey. My feet are numb but at points very sore and painful. I'm on number 20 of ecp, so at the start still really. I recently got painkillers for the polyneuropathie in my feet and painful skin, which allows me to sleep better.
Apparently ecp is good for skin gvhd, sclerosis and inflamation so I just need to wait. I'm becoming less mobile , even with my granny walker. Stairs are tortuous. General skin gvhd, as you described, eyes too, mouth, having a pee is painful. Roll on any ecp improvements!
Hi Helen, good to hear from you. I understand how you feel. GVHD takes over our lives and for me I cannot move on until I get my mobility back, I seem to be on constant hold hoping and waiting for the scleroderma to let up a bit on my legs. I sometimes feel like that there is a slight improvement then a few days later I feel like I am in the same place I was six months ago. Then I feel like my skin on my legs is getting tighter. Like you I try not to go upstairs that much as is not easy or comfortable for me. Tomorrow is my 29th Ecp session in my 7th month so I am also in my early days of treatment. Mentally I have definitely been mentally scarred by this gvhd experience and my mental recovery I know will take quite a time after the start of my physical recovery, but the physical recovery needs to start first to give me the independence back to start the mental. Luckily I do not have any really bad skin peeling issues but to have a few dry skin issues namely my back and skin depigmentation at top of arms. Let’s hope things start to get better soon so we can hopefully move on soon with our lives.
Have been reading about UVA1 treatment which is available in some dermatology departments in some hospitals which is used to break up the fibrosis in some peoples sclerotic skin. Will seek to find out more when see my consultant on Wednesday. Does anyone know anything about uva1 treatment or ever used it.?
Low-dose UVA1 phototherapy for treatment of localized scleroderma☆,☆☆,★
MartinaKerscherMDaPeterAltmeyerMDa
Hello all,
Here's the title of some research on the uva1 treatment. I just googled uva1 treatment. It looks promising. My only concern is that the chemo and ecp have made me more prone to skin cancers triggered by sunlight. I presume uva1 lightwaves are also present in sunlight. But I'm not a scientist:)
I guess it's a good question for my next check up.
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 feel quite low
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 release us for a pee. Do they rinse out the needle and kit with NaCl? They tried it with me, but with little effect.
I just got back from the clinic. I'm writing this after lying with eyes closed, lots of gel in my eyes, and I'm under a blanket. Need to get those slera lenses made. Eyes burning most of the time.
We'll see these things through Dave. Even though it's rotten.
Comments
Many thanks for being there too. For both of us and other sufferers of gvhd it is very isolating to protect ourselves from further gvhd flare ups. I am still suffering from my initial flare up, luckily the gi and mouth gvhd has died down but I am still left with my immobility at the moment. As you I am also suffering from the isolation which gives a great deal of psychological and mental scarring. Without being able to really do anything I don’t really achieve anything and this it makes me feel quite useless. All I can try and do is push myself a bit to improve but that often seems sometimes so difficult. I hope your symptoms have not got worse since not having your Ecp this week. I am on Monday and Tuesday having my sessions with a lot of travelling so will be quite worn out from it. Have a good weekend.
Hi Dave
Thanks. I find knowing when to 'push myself' or just go easy and be kind to myself a difficult line. Thank god I have recently got a therapist paid for by the health service who seems to be taking me seriously. He's not very experienced and doesn't do much, but I make the most of it and try to see it as a win.
When you say emotional scarring, you're probably right but I can't cope with the negative take on it and prefer to tell myself 'in my stronger moments' that it's ok. I don't think I would be here without having discovered a concept .. there's lots on it in the Internet, on 'self compassion' practice. It's the practice of talking to myself like I'm my best friend and acceptance. Sounds aesoteric and a bit wierd but it works (also statistically proven). It's not for serious illness, it's for everyone.
Kristin neff is a leading researcher in the field (on you tube- check out , the difference between self esteem and self compassion) . I could post a link if you're interested, let me know.
"Center for mindful self compassion" the online website with free resources to download. I'm on their emailing list for free resources and online seminars.
I also found free online courses helpful...on learning platform 'future learn' , for example , on mindfulness. Learning in itself is proven to ease stress.
My 8 months horizontal in the hospital were made bearable with that, it was also helpful that a wasn't really mentally present for a long time. I think I cope with the scarring with gaps in my memory. My brain's way to protect itself.
A therapist in the clinic was helpful when she told me I'm not living in my old Film. It's weird but I found this liberating.
I'm thinking of you with your ecp and travelling monday, tuesday Dave. I have to wait another week.. the following Monday Tuesday.
I'm here Dave.
Best, Helen
Hi Dave
Tuesday today, I'm thinking of you on your long trips and wearing treatment. Hope it brings you a plus, even if only in the long run. Does someone drive you?
I'm not doing well myself, emotionally low and physically missing the ecp... flakey ankles are painful so not sleeping well.
I can't get out at all cos it's icy. Not even stand on the doorstep. I'm really lonely. At least my ecp gets me out and I see other people.
Sorry to download on you Dave.
Helen
Hi Helen.
sorry I did not respond sooner but after my 2 days Ecp treatment I felt absolutely worn out and spent yesterday afternoon sleeping. I spoke to another patient who was also having Ecp and they also said they also felt very tired after Ecp and also they are on high steroids so they also said they are not sleeping due to the steroid affect keeping them awake. They also did not look too good. As you say by going to Ecp is a way to see a few people and to feel a little bit normal. I am 100% at home except for Ecp. Like you is causing my life to be on hold and yes it is very lonely place to be. After my Ecp my legs felt tighter as though things had got worse but I think it is due to tiredness it makes it feel worse, just need to wait a few days to see if things improve. However it will be slow! I travel to Ecp with hospital transport ie a like minibus as I am so unstable walking due to the scleradoma I have to travel in a wheelchair. At home I can walk around from lounge to kitchen and I can just bend enough to slowly pull myself upstairs but it is not easy. Before the gvhd I could go up 2 steps at a time now I can only go up 1 at a time but cannot carry anything as I have to hold on and pull with both hands. I am just waiting and hoping for the Ecp to start working to start to give me more mobility to give me more positivity. Some days it is very difficult to get motivated enough to get out of bed, but know if I don’t keep the muscles moving s bit I know I will not improve in the long run. This week my second Ecp treatment was going to fail as the machine alarmed half way through but turned out the centrifuge bowl had filled up with too much blood and the machine needed resetting to drain some blood out the centrifuge. I hope your mood picks up a bit as I know how much this gvhd can get a person down. I know when you are not in direct contact with another sufferer you believe you are the only person with issues, we are not as we have seen by the forums. We just have to be patient and slowly hopefully we will see progress.
I hope Ecp helps with ocular chronic gvhd as my eyes have recently become a bit dry and gritty. I am now using eye drops which does ease the eyes for now. Luckily it is not unbearable.
Thanks for getting back Dave. I'm pleased your transport is part of the ecp treatment deal. Sounds well organised. Glad you are being kind to yourself too, that gives me a clear message about myself. I'm finding after midday is when my day starts and at the moment I'm just trying to accept it which is difficult. I spend the morning in bed after tablets and eating a bit.
The only way for me is to be in the now, not yesterday or tomorrow.
Sorry to hear you've gone from good on the stairs to struggling again. It's really not easy, I'm getting worse but have a little lightweight cloth rucksack. Going down is painful.
I just can't imagine how I'll be mentally in ten years if this stays. Social isolation and immobile. I read that 42% of 'chronic gvhd ers' manage 10 years after bmt.
Trying very hard to be in the now.
Hi Helen. Hope the Ecp went ahead for you yesterday and today. I know when you are doing something like Ecp for gvhd it helps give more positivity as you feel like you are doing something to help resolve it. I have kept a bit away from forums this week as too much over reading into peoples issues with gvhd also gets me down sometimes. I want to help with the experience I have with some issues but I don’t want it to have a negative impact on me. I hope you start to soon see the benefits of Ecp if you have not already. Unfortunately I have not really seen any change yet except for more positive liver function. I keep holding out hope.
Hi Dave
I feel just the same about portioning my access to the different gvhd forums. It impacts me too.
I'm lying here and need to sleep for a very early eyeclinic appointment tomorrow , but cant cos of the skin ankle sclerosis gvhd. Painful, and the gvhd seems to make it more painful, but i think the ecp does help me somehow. Cant put mx finger on it though.
It went fine, the machine only stopped once or twice. The ward was warm too. Nice late appointment this morning too.
Night night
Helen
Hi Helen,
Hope you are fine. No real changes in me since our last communication. I guess you had Ecp yesterday and today and are probably quite tired from it as I also seem to be after treatment. My sclerosis of my legs with tight skin does not seem to have changed or reduced yet as I still find mobility so hard due to the stiffness it gives me. My eyes seem a little dry at times and my eyes get a little blurry but is luckily not serious yet. Other than these gvhd symptoms luckily my bloods have been quite good and stable, however the gvhd symptoms I have are bad enough to me as they have taken away my independence and tire so much that I also never seem to much energy to do anything. It is always so very difficult to be patient but I know I must for the end result. I hope your ankle is improving or at least not getting worse.
I wish you a healthier new year.
Hi Steve / dieselsdinker,
can I ask, when you had Ecp did you have scleradoma ie tight skin, and if so how bad? Or was most of your gvhd skin issues in dermis ie skin pigmentation issues and subdermis ie skin sensory issues and sweating issues? After what sort of time period of Ecp did you start to see improvements? I do understand everybody’s relation to Ecp is different to Ecp with different timescales if any change at all.
Dave,
Most of my issues with GvHD was dryness and flakyness of my skin which was incredibly itchy and uncomfortable. It was also reddened and inflamed in places, particularly around my neck and eyes. I can't remember it being tight particularly. I'd lost so much weight that I think my skin was a little looser than it had been. I guess the joints around my knees and elbows felt a bit tighter if anything.
The other effect (though I'm not sure it was GvHD or general recovery) was that I felt cold most of the time, even when everyone else in the house was feeling hot.
ECP was a slow process and frequency initially was fortnightly I think. There was an initial improvement in the first three months which gave them confidence to continue. The most noticable improvement for me was that the dryness of my skin improved as that was the most debilitating effect. At one point the frequency of treatment was reduced in conjunction with stepping back my Ciclosporin which allowed the GvHD to flare up again slightly, so the frequency and Ciclosporin were put back to the previous and reduced slowly later.
I hope this helps,
Steve
Hi Steve and Dave,
Just a quicky, my skin on my ankles is very tight, skin breaks and hurts, is very thick and flakey. My feet are numb but at points very sore and painful. I'm on number 20 of ecp, so at the start still really. I recently got painkillers for the polyneuropathie in my feet and painful skin, which allows me to sleep better.
Apparently ecp is good for skin gvhd, sclerosis and inflamation so I just need to wait. I'm becoming less mobile , even with my granny walker. Stairs are tortuous. General skin gvhd, as you described, eyes too, mouth, having a pee is painful. Roll on any ecp improvements!
Best to you both,
Helen
Hi Helen, good to hear from you. I understand how you feel. GVHD takes over our lives and for me I cannot move on until I get my mobility back, I seem to be on constant hold hoping and waiting for the scleroderma to let up a bit on my legs. I sometimes feel like that there is a slight improvement then a few days later I feel like I am in the same place I was six months ago. Then I feel like my skin on my legs is getting tighter. Like you I try not to go upstairs that much as is not easy or comfortable for me. Tomorrow is my 29th Ecp session in my 7th month so I am also in my early days of treatment. Mentally I have definitely been mentally scarred by this gvhd experience and my mental recovery I know will take quite a time after the start of my physical recovery, but the physical recovery needs to start first to give me the independence back to start the mental. Luckily I do not have any really bad skin peeling issues but to have a few dry skin issues namely my back and skin depigmentation at top of arms. Let’s hope things start to get better soon so we can hopefully move on soon with our lives.
Thanks Dave, wishing us all just what we need, when we need it. That would be great.
Helen
Have been reading about UVA1 treatment which is available in some dermatology departments in some hospitals which is used to break up the fibrosis in some peoples sclerotic skin. Will seek to find out more when see my consultant on Wednesday. Does anyone know anything about uva1 treatment or ever used it.?
Low-dose UVA1 phototherapy for treatment of localized scleroderma☆,☆☆,★
MartinaKerscherMDaPeterAltmeyerMDa
Hello all,
Here's the title of some research on the uva1 treatment. I just googled uva1 treatment. It looks promising. My only concern is that the chemo and ecp have made me more prone to skin cancers triggered by sunlight. I presume uva1 lightwaves are also present in sunlight. But I'm not a scientist:)
I guess it's a good question for my next check up.
Wishing you all a peaceful evening.
Helen
Hi Dave
Are you having the light treatment already? What do your team say about it?
Best wishes
Helen
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 feel quite low
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 release us for a pee. Do they rinse out the needle and kit with NaCl? They tried it with me, but with little effect.
I just got back from the clinic. I'm writing this after lying with eyes closed, lots of gel in my eyes, and I'm under a blanket. Need to get those slera lenses made. Eyes burning most of the time.
We'll see these things through Dave. Even though it's rotten.
Best,
Helen