Hi Pruesy,
You say the worst ever, does that mean you have had chronic GvHD the entire time and it's just worse now? I could use some education instead of finding out the hard way. Were you still on steroids?

I'm sorry it's upsetting. After everything else you've been through I would just be happy to be alive. My BMT was in March. About October they started taking me off immune suppressants and I became the poster child for GvHD. I have thickening skin which was first noticed by 5 people telling me what a great tan I had haha, I havent been outside in the sun for 2 years. Then my hairline receded 6" and the skin on my head began to flake. My eyes feel like they have sand in them and discharge mucus. Half of what I'm typing I can't see. Every time I eat I get blisters in my mouth. I don't move without a box of Klenex, my nose won't stop running. I had a lung infection (scary!) and the steroids make it so I cant sleep. I eat like a horse. I get crazy cramps that last hours. It all sounds worse than it really is. Honestly I feel pretty good. These symptoms are all minor (so far) and I'm imagining the benefits of graft vs leukemia effect. I am so happy to be alive, so happy to have a great wife, and great parents. Hmm. I'm sure the anti-depressants play a role too but who really cares? Its not like I've kept my body organic and chemical free. Happiness is everything to me.

Please tell me about your experience. I have a long road ahead of me (I hope). I've never spoken to anyone who has GvHD.

Sincerely,
Christian

Hi Christian,
I actually feel like a bit of a sook after hearing about your experiences. The skin thing is new for me - which is troubling to development new issues after seven years. I have the thickening of the skin and had a biopsy last week but all they really come up with is GVHD and most likely an increase in immunosupressents.
I have it in the mouth - I use oral creams nightly, I have an abnormal liver which I'm on meds for and at some stage I'll need both my knees replaced due to dead bone which they attribute to the effect of prednisolone.
I'm ok with them increasing the immuno however will refuse any more pred due to the side effects.
I wish you all the best, you have a great attitude and great support.
I have the great support however being single at 34 and with so many issues and unable to have children - it seems I'll remain that way !
Have a merry christmas, Prue

Hogwash! :-)
I am 46 and have no natural children. My previous wife had a 12 year old when we were married but it just wasn't the same. She is 23 now and calls me dad. I'm the most stable person in her life.

I met my girl now on E-Harmony. Wow. I filtered 500 people down to contact 30 and went out with 10, and had simultaneous relationships with 5 before choosing the best one to try to make a go of it. There is no way I could have done that on my own. I'm not a good looking guy, but a smile goes a long way I guess. Anyway, I committed to this girl and two months later she moved in. 2 days later I was diagnosed. She didn't run!, I married her a year later and we had our honeymoon in my hospital room just before my transplant. I truly believe she is a gift from god. She brought with her a 1 year old who is now 3. She calls me daddy and NOW I understand so much more. My heart melts and I would argue with anyone that said it is not the same as having similar DNA, heck, my DNA isn't mine anymore anyway right? There are a lot of single guys our there with children that really need you. anyway you didn't ask my opinion but...
So did you have Acute GvHD or Chronic? Have you had it full time for 7 years now?

Christian

Hey,
I myself had a bone marrow transplant almost five years ago with a partial 8/10 match. I had terrible gvhd for years, and still suffer with some daily skin flare ups as well. You are definately not alone in this! :)
I don't know if you are on any immuno suppresantts at the moment, that's what the doctors had me on for a while. I hated it! Escpecially taking prednisone. Now, remember if it is necessary, it is always better to try taking the suggested meds if it's at a serious state. What I also found that helps is alternative medicine! I myself respond very well to naturopathic medicine and homeopathic medicine...really do your research and find an expert that can understnd your situation and help you. There is one med that I take that you can find at any health food store that's naturopathic called: Master Herbalist, for allergies. One more thing, I find that it ALWAYS helps to keep the skin hydrated and moisturized all the time, and that when I get a reaction, use pure aloe vera gel (also from any health food store) that I keep in the fridge so it's cold, and I put it on my skin that's having the gvhd reaction.

I hope this helps! Just remember that there is a ton of alternative medicine that can really work for you...it's been around thousands of years before our more mainstream western medicine. Good luck!
I'll let you know if I think of anything else that helps :)

Hi, thanks both of you for sharing your experiences with me, my transplant will be 8 years in July (the date is also my dads birthday so he'll be 65 and I'll be 8 !).
I currently take about 12 -15 tablets a day with my immunosuppressants recently increased due to the thickening of skin on my arms and marks around my stomach. So when you take so many tablets and have for so long it gets hard to want to take more tablets recommended through different alternative medicine avenues.
Christian - I think because I didn't really have any of your symptoms early on - maybe it's just my turn now and therefore you've already had your fight with your donor and it will get better ? Here's hoping hey !
I refuse to take prednisolone - I hate it so I am on mycrophenelate (?) - I was sick of having a fat face and eating all the time.
I do have the aloe vera juice in my fridge - I go through phases of drinking it. I guess I've been dealing with it all by drinking lots of wine instead - which has been getting a little out of control and I've had to settle down and look at the bigger picture - I think it's when you live by yourself and get a bit lonely.
Anyway, I think it's great to hear of others experiences.
Love Prue

Hi Pruesy,

I had my transplant back in 1994 seems like an enternity ago. I was just about to leave the transplant center when GVHD hit. The skin is how they knew it was GVhd right away. I agree that it was tough to go through, but the doctors were glad for me as it showed the new marrow was taking.

I have to say that everything TInWoodsman wrote remind me of my experiences with GVhd and everything it caused, but he is right I was glad to be alive. I know it seems tough to think that way sometimes, but in the end will feel that. I am living proof that it all works out minus my hairline never came back. I was taught by my uncle before my transplant to have RMA (right mental attitude) and I will get through everything that goes along witht the transplant and he was right. No matter what my illness threw at me I kept positive. Great family, amazing nurses, and just the silly mindset I always kept got me through me experience. Trust me at 17 it wasn't easy, but it made me a better person in the end.

I am trying to tell everyone here that it will get better, I know it seems hard to believe now, but trust me it will, I'm living proof.

Please keep RMA!!! I am wishing all of you better times ahead as I know you will have them.

Spence

Hello everyone, this is my first post. I have empathy for all of you. My MUD transplant was 20 years ago. I didn't develope CGVH until a year later. I suffered with the GVH for 10 long agonizing years. I tried massive amounts of predinsone, photopherisis, physical therapy, thalidomide, but nothing worked. I was in a wheelchair for a great part of it. The worst parts of the process were the joint contractures and the blisters I developed on any part of my body that had friction or pressure. When I went out, people thought I had been burned. Basically, I had 2nd degree burns over half my body. I couldn't wear clothes without being in agony. I can't begin to tell you the amount of painkillers I took, and I'm not talking Tylenol, I had Morphine, Percocet, Dilaudid, you name it, I took it. In the end, my GVH essential burned itself out. So all of you, just hang in there.