Oh Audrey, I’m with you. This is a terrible time, it begs belief. Sending hugs. Words aren’t enough.
Love
Helen
Hello Audrey, I’m thinking of you, sending you a big hug, compassion and love.
I can’t imagine how you’re coping. Words can’t help, but I’m holding your hand.
Love
Helen
Thank you Helen.
my daughter had a second biopsy yesterday. They’re planning on tapering her off the immune suppressants but will wait until the result of this second biopsy.
i do feel so desolate but must remain hopeful. I lost my son last August and I can’t lose my daughter .
my Daughter is amazingly strong and will fight this as she’s done all the way through her illness. You are all warriors here .
Audrey xx
Hi audrey
i pray everything goes well for you’re daughter , I know what a worrying time it is my tests came back like that ,so I had to have a bone marrow transplant ,
you have had it just as hard , you are also amazing and very strong always here for you lots of love & best wishes
you’re daughter has everything to fight for with such a lovely family
keep strong take care much love
you’ll never walk this fight alone
michelleanne xx
Hello Audrey, you’re a real warrior yourself. I’m really impressed that your daughter’s staying strong, even if only for her boys. She’s marvellous. .. and so are you.
Thank you for updating us. We’re with you, big hug and much love.
Helen
PS. She’s already had her second stem cell, bone marrow, transplant Michelleanne.
Thank you both so much for caring about us. We will both fight this illness.
i hope that you are both having a good weekend and enjoyed todays sunshine
xx
Hi audrey
always here for you , please keep in touch
xx
Hello dear Audrey,
we are with you,
Big hug,
Helen
Hello my friends
Thank you for all your kind messages and support.
I have just heard, and wanted you to know , that my daughters second biopsy results have come back and they are clear. I’m on cloud nine! I’m so so relieved that I want to cry.
I really hope that you are all having a better week, Helen and Dave with your gvhd and Michelle with your chest infection . Always thinking about you all.
love Audrey
Hi audrey
that news is wonderful , you and you’re family have been in my thoughts a lot this week , I know how you feel you have a good cry
you must release it , at least it’s for happy news
lots of love and best wishes you’ve made my day
give you’re daughter a big bear hug from me and my family , and her to hug you very tightly
???
michelleanne
Thank you so much, Michelle.
I’m sending a big hug to you and Helen and Dave xx
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 end of steroids as I try to wean off them as last month I was on 5mg day, then two weeks ago down to 3.3mg and currently on 2.5mg day. Now freezing on 2.5 as I think my eyes may be a flare so want to see what happens. I am bearing up but hard as still next to no mobility.
Michelle and Audrey, hope you are both progressing well even if just small gains.
mall keep well and hopefully good news will continue for everyone.
Hi all
dave I hope you start to improve soon , my eyes have started to feel very dry & gritty just in the last few months , awful pains in my hips .
always here for you if needed even just for a chat
Hope you are ok helen ?
best wishes
michelleanne
Hello All,
What a relief! Your wonderful news has lifted me Auds. I’m still smiling. Thank you for updating us. A big hug to you and your daughter.
Dave, Shame about your eyes. Have you g0ot any painkillers that touch it? Morphine didn’t help mine but paracetamol is good. I hope you’re getting somewhere on your jakavi search. I guess direct contact with Novartis sounded the best option.
The mobility thing is really isolating. I guess driving is difficult too now with your eyes.
Sorry to hear that about your eyes Michelleanne. Are you on jakavi?
I’ll get off here. I’ve had a challenging time last two, three weeks, a skin, eye flare up combined with the clinic cancelling my ecp treatment, so desperate for it next monday Tuesday. It’ll be a four week gap, feel like a hero.
Big hug to all, thanks for making my day Audrey,
Much love to all,
Helen
Hi helen
Sorry to hear you’ve had a challenging time there’s always something , hope you get sorted soon
I just take paracetamols I’ve been told to get eye drops , my skin is flaring up too
every achievement makes you feel good hope this continue
you all like super hero’s
xxx
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 again as these can cause gvhd flare ups. It was my covid and flu vaccines that flared up my initial gvhd.
Helen, sorry you are suffering at the moment, it seems to be a constant thing with gvhd. Sorry you have had skin and eye flare ups, my eyes either are gritty that make them sting and blurry. I am not sure parevetomol will help as not really in any pain. Most of the time I can hardly read as eyes so blurry. Do you actually get a pain that you require paracetamol for? On driving front I used to drive every day of my life, and now have not driven for over 2 years as so inflexible and sometimes so difficult to stand up due to muscle weakness and stiffness.
Michelle, I hope your eyes let up a bit for you soon. I guess over time we will all improve on the eye front. I guess ell as this seems to cause joint pain.it will all take time as does everything from gvhd. I get a bit of pain in hips as well, not sure if that is from the prednisone as well. I feel though I have not made progress in such a long while except that I have got down to 2.5mg prendisone and unfortunately my consultants say there are no immunosuppressants to sort my skin tightness problem. Only rezurock or Jakavi would help it but both not available in uk unless local trust pays and they say if they paid for each patient who needed it they would be bankrupt. So just hoping rezurock available soon. Bye all for now.
Hi Dave
not sure what causes to joint pain , I’ve been told to just go to see my gp
i feel sad for you that you can’t get the medication you need , I hope they can find something to help you. I haven’t driven for 2 1/2 years I’ve no interest now, even going out I’m so tired and my joints ache I wonder it it’s worth it.
keep strong
xx
Hi everyone
I am so sorry that you are all suffering with your eyes. The gvhd symptoms are so debilitating and I think you all do so well to get up each morning and keep moving forward.
Helen, I hope that your ecp treatment goes ahead next Tuesday and thaT your skin and eyes calm down soon.
Michelle, I’m sorry that you too are suffering with your eyes and having very painful hips . You’ve all been through so much that I wish with all my heart that you could all get a break from the side effects of all the treatment that you’ve had.
Dave, I know that you are having such a rough time and I think you are doing amazingly well to keep going and thank you for all your suggestions and support for us all when you are having such a challenging time .
my daughter’s consultant wants her to continue the immunoglobulin each month to help her immune system and is also going to gradually reduce the immunosuppressants. What a long hard journey you all have but you are getting there .
As always, I’m sending love and all my positive wishes that the gvhd becomes less aggressive and you all have a better few days .
Audrey x
Hi audrey
it is a long journey , harder than I ever thought it would be , never mind at least we are all still here
enjoy everything anyway we can
hope things are going ok
love best wishes
xxx
Hello you lot,
This is becoming a special place for me. Thank you.
Yes, we’re heros.
Just one thing, I’ve started a new daily pattern which seems to help. I get up, take all my tablets, eat something… anything, and then I go back to lie down for a few hours. I’ve started taking paracetamol for the skin/joint/ankle pain, and so when I finally get up second time, the paracetamol is working and makes the day easier.
This new routine was difficult because I’m not like that and don’t want to automatically lie down for so long, but it’s allowing all my meds to work and I think I underestimated how powerful their impact is on me.
There’s quite a lot on the Facebook gvhd group at the moment about eyes.
Sending you all a big thank you for being there, through all this suffering. .. with a big portion of love and compassion too.
Have a good Sunday, at least it’s a free day from all the therapies and appointments.
Helen