Hi helen
I’m not too bad , enjoying time with the grandchildren , not enjoying the snow and the cold weather , we are doing well as we can be , be very proud and thankful for everyday day , even when it’s a bad day with raging hormones and everything else lol
hope you are doing ok
love
michelleanne
Hello Audrey
My goodness you are really going through it, I’m so very sorry about your son and what your dealing with is just too much, try and stay strong and don’t forget to look after yourself too. The symptoms your daughter is experiencing are very similar to mine post transplant, the fluid retention was so bad I could barely walk, and oh my goodness the tiredness and lack of appetite was just awful, at times I thought “this is no way to live”, but it does pass my freind I promise you. I’m now 8 months post transplant and doing well, I pray you’ll say the same about your daughter soon..x
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 secret, but unfortunately my sclerosis is getting worse. It’s ankles and mostly lower legs but it’s spreading. It’s just skin gvhd… makes me immobile.
I’m feeling ok emotionally. Celebrated my 60th recently, recharged my social batteries. Very small gathering and a bit too much for me emotionally but glad I did it. Could count my blessings.
I read above that your daughter’s eating a bit better Audrey. That’s great news. It seemed to be a big step out of the fatigue for me when eating improved. Takes a while. I found it helpful to be told I could eat anything I want, just eat.
How are your eyes Dave? Can they increase your immunosuppressants for it?
How are your blood test results Michelleanne, how’re you doing?
This little chat thread with you lot is very helpful. Thank you for being there. No-one else can understand. I’m blessed with a loving family but they can’t get it.
I’m not sure about the new website design. I’ll get used to it.
Hi all,
hope you are all ok , helen I hope all goes well in the clinic , my blood tests are ok I’m going to hospital every 5 weeks to give blood to get rid of the iron , I’m still on all my immunosuppressants my legs ache and swell up my gp says I’ve just got fatty legs they don’t understand , pleased you enjoyed you’re birthday , it’s my 60 th in June my family don’t get that I don’t want a big party I can’t cope with that , so we are going to the beach with the grandchildren and having fish n chips
I’m so happy we have these chats , because you all understand like no one else does
love & best wishes
michelle anne
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 with gvhd there is nothing you can really do except wait and hope, as this takes a long time it unfortunately gets me more down. It helps me to hear you are all making progress however slow it may be.
Hi Dave
sorry to hear you are finding things very difficult , I have some days when all I do is sit , and have very dark days , you are such a fighter and a very strong person , I find it easier to go one day at a time try not to be so hard on yourself , always here for a chat if that helps
keep strong take cre
best wishes
michelleanne
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 helpful when I was down. You really helped and made a difference. It’s endless. It’s ok to feel bad. I find it really hard to accept that, but easy to say.
I think I said i practice self compassion exercises. One thing that helped recently… "when I’m struggling, talk to myself like I’m my best friend ". I say it aloud, .. “dear Helen… this is hard and you’re doing really well”… etc..etc. praise and encouragement. Sounds banal and a bit weird, but it has helped. I forgot about it for ages but active practice helps. This chronic gvhd sucks and we can’t change it.
I’d better get off to bed, physio in the morning, the skin’s so broken he can hardly work on my ankles.
I’m with you all. Thanks for being there and sharing.
Love
Helen
Hi Michelle, Helen, Dave and Jan3
im sorry that I haven’t been here for a while . You have all been and are going through so much but how I admire your resilience and strength to get up and function every day.
Dave, although you feel despondent that you are “ doing little”, believe me, you are doing amazingly well to get up in the morning and watch tv. You all are having such a long hard journey and yet you take the time to support each other ( and me ) . I have such admiration for you all!
I can understand the pain and fatigue as I suffer from quite severe fibromyalgia . Nothing else ! None of the horrible, challenging symptoms that you all have to deal with.
My daughter has been in and out of hospital. She’s picking up so many infections probably from her wee boys but she needs to be with them for her well-being. I’m trying to support her and her family as much as possible. I think and hope that she is doing as well as possible. The doctors have been talking about decreasing the immune suppressants but that could make the bowel gvhd worse and she’s so thin as it is that they want her to gain some weight.
Anyway, please be kind to yourselves . Although all your symptoms vary, I can see with being close to my daughter, just how difficult this illness is to cope with.
Sending love
Audrey
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 in the long run. When I was on cyclosporine in the beginning and came off it did not seem to affect me except that my immune system got stronger as it would. Yesterday I came off cellcept as was not doing anything for me except giving me side effects.
Thankyou all for your support recently and being there. Sometimes I find it very difficult mainly as I suppose I don’t see any real progress in my scleroderma reducing which is my main issue I have taking away my independence. The medication that would probably help me Jakavi (Ruxolitnib} is not currently approved for use in uk but they are trying to get it approved for gvhd.
luckily my steroids have been reduced slightly to 5mg every other day ie prendisolone so hopefully this will move in the direction to reduce the fatigue and the Edema in my legs.
It is good to see Helen making progress with her diet which is also improving her fatigue, and that her vision is also improving.
hopefully we will all make some progress this year. As I have previously said in past we all have to be patient as it takes a long time to improve your body after a Bmt and normalise the new immune system.
Hello my dear support team 
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 icu after they tried to get them off it.
A tip that I’m pleased with, also from the Facebook group is, … don’t start tapering off the immunosuppressive until hhe symptoms are gone, not nearly gone. I guess that means, Audrey, that if your daughter is symptom free then go ahead, but I’m not sure she’s there yet.
I don’t want to end up on opiates again with eye gvhd as a result of abruptly stopping the immunosuppressive meds. Thank goodness my Dr knows me and has a good overview.
Now I’ve been back on the meds for 3 or 4 weeks I’m starting to feel human again. I really appreciate it. …
Dave, when we are in that hard place we can’t look up, never known feel human and engage with others. You’re a precious part of this group, whether unable to function, or having a positive moment. Talk to yourself quietly out loud as if you’re your own best friend.
My building sites at the moment are skin below knee and eyes. Not very mobile. Don’t get out to ‘walk’ at all.
Love to you all.
Helen
Hi all
jan 3 you are doing great , I wish I was as far as you , I’m 2 years post bmt .
we all have good days and very bad ones , I find the hardest part not doing what I want when I want , the best part is having my husband with me all the time he’s my soul mate.
. I’m enjoying spending time with our grandchildren but they tire me out so much.
you are all doing amazing in different ways , and different times
think where we have been , we have a good team going here , the support I get from you all is what keeps me going
Love & best wishes Michelle Anne
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 then weened off the immunosuppressants to let the body continue. If then gvhd sets in they initially put you then on prendisolone to calm the gvhd. If then then after a time if the prendisolone is not bringing all symptoms down then you may be offered Ecp or other immunosuppressive meds such as say cellcept. So I think the immunosuppressant meds they are talking about is the initial cyclosporine for the initial transplant for the graft to establish. You are right though with what you say though you don’t want to stop other immunosuppressants unless the symptoms have gone unless the meds have had no effect on the gvhd as you don’t want to continue taking them if they are doing nothing as you get the side effects with each med.As I said in previous post I had been on cellcept for last 3 months which has had no effect to my gvhd symptoms and the consultant said for me stop it and not take any more and I believe I am seeing good effects already that my edema is reducing around my ankles which seems to be a side effect of cellcept.
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 could get on one of his studies Dave?
I signed to join then bottled out. But worth a try. He’s world renound in his area… chronic gvhd. … Uniklinik Freiburg, ITZ.
Best wishes to you all,
Helen
Hi all
I’m still on nearly all my meds , the drs reckon I’m going to be on them for years , it’s weird that we all take different ones ,
it’s a good job we have the nhs or similar as we couldn’t afford the treatment
I hope you get sorted soon with some form of meds to help you , that’s one thing mine gvhd is mild
hope all goes well keep strong
love &best wishes
michelleanne
Hi All
It’s so good to hear from you all and the support that you give to each other and to me is wonderful.
you all suffer from such a hard, debilitating illness and yet your strength and personalities shine through. Although it’s my daughter and not me who is suffering from this illness, I feel as if you are all my friends. You all got me through some very dark hours .
Thank you Dave and Helen for your comments on tapering off the immune suppressants. I will pass them on to my daughter who can have more of a chat with her consultants. I just wish that she could put on a bit of weight. She is really trying with her eating. Did it take you all a while to start putting in some weight? I know that you’ve had lots of problems in this area , all of you, especially Helen so any advice would be appreciated.
i think that you are bound to have times when the roller coaster journey that you are on gets you down. Helen’s advice about speaking to yourself as you speak to the others in this group , sounds great advice .
love to everyone
Audrey
Hi all
it took me a good year before my weight gain , now my weight is upto what I was
don’t think it’s as much the amount of food , I have trouble with my thyroid
it’s very hard to eat properly , I eat soft food and I eat more sweet things , I never really fancy food try rice puddings , milkshakes or hot chocolate , my grandchildren eat more than me , I don’t eat a lot of meat but a lot of soft fish
you are doing amazing , take each day as it comes , eat what you fancy little and often
take care much love
michelleanne
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 for a major immunsuppressant (jakavi) and it’s terribly frustrating and depressing for thousands of sufferers. It’s a topic here in Germany where they’re carrying out studies on alternatives cos it’s so expensive.
I’ ll be off here, love to you all,
Helen.
Hi helen
were really lucky here that we have the nhs so I’ve had all my treatment through that
i agree eat what you fancy ,
enjoy you’re weekend
michelleanne
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 down to stomach, and your natural stomach biome has also been destroyed and is continually being damaged by the antibiotics. I had pain and uncomfortable feelings in my stomach which have got better over the two years since my transplant but not completely gone. The taste of food is also changed and becomes very metallic tasting and this also takes a long while to normalise. I used to love to cook all types of food to eat but this live has gone for now after the treatment. I hope I get it back. I never seem to feel hungry any more so this can also reduce the quantity you eat. I guess I started to eat more when I got chronic gvhd about 7 months after transplant when I then started to take steroids and this makes one eat. Unfortunately you do not always have an appetite for healthy foods, but I started to eat pot noodles, pasties, Kit Kats etc a lot of rubbish really but it did help me put on weight. So as the others state you really have to eat at first what you fancy just to get weight on and slowly over time try to introduce some better things. Luckily I have put weight on but it is different for everyone.
With regard to Jakavi being available in uk for chronic gvhd I am led to believe by consultants that Anthony Nolan are trying to get it approved as it was when covid was rife. With sclerotic gvhd it seems to have worked well in covid times and also for patients in US and rest of Europe. I have read on the Facebook group many American patients with sclerotic gvhd have Ecp and Jakavi and in about 7 weeks a lot seem to get a start to skin loosening. I have now had this sclerotic gvhd for over a year and still no end in sight.
Hi Dave T
i totally agree with eating habits , I’ve changed so much with food , I can’t drink instant coffee or anything fizzy and no alcohol I’m so boring .
I hope you can get you’re gvhd sorted out soon
take care best wishes
michelleanne