cGVHD

[Alex]

Hello all,

Im Alex ,26 yrs old- SAA , BMT in 2004. Chronic GVHD since 2005 and i still have it .
Well i have a very general sort of a question-Can somebody tell me how long does cGVHD last.
Well i have got various answers for that question.
The one i liked the most- is it usually burns out in around 5 years and i liked the least is that it usually doesnt ever go away .

Can you all please throw some light on this.
My counts are very good right from the start.GVHD of eyes, oral,bit of skin.

BTW this is my first post hope to hear from you all.
Thanks

[Ruth Cuadra]

Hi, Alex.

Welcome to Marrowforums and congratulations on getting through your BMT. Good counts are the key to it all.

I think that in some respects cGVHD is the price we pay for being here. My GVHD set in about 6 months after my transplant with elevated liver counts, digestive problems, mouth and eye symptoms. I wanted to believe the folks who said it would burn itself out in 3-5 years. After 9 years, my cGVHD is still hanging around in a sort of steady state. I have to side with "it doesn't ever go away." I stopped taking most drugs by the 5-year mark, but I still have mouth and dry-eye problems that don't seem to get better or worse so I just treat the symptoms. After about 6 years, I started to develop problems with muscle cramps that gradually got worse until I had to give in about a year ago and start taking medication for them. No one can really explain these cramps other than to say it is probably GVHD. I feel very lucky that none of my GVHD issues have ever been life-threatening, but they can be plenty annoying.

The best advice for dealing with GVHD is to stay on top of your symptoms and be aggressive in treating any flareups or new symptoms immediately.

Regards,
Ruth

[Alex]

Originally Posted by Ruth Cuadra

Hi, Alex.

I stopped taking most drugs by the 5-year mark, but I still have mouth and dry-eye problems that don't seem to get better or worse so I just treat the symptoms.

Regards,
Ruth

Hi Ruth

Thanks for replying.
Well its great to know that you were off of drugs by the 5th year.
I wish to be off by around that mark (Ya, i know each body reacts differently and comparing only frustrates but just statistically speaking)

Right now i have to visit the medical center every second month for evaluation and perhaps to taper the CSA 100mg(bid)or Mycophenolate.
I was on Steriods before but had to be taken out.
I developed AVN (like i had not enf goin on) must admit it was the tuffest thing to know in this whole journey.
Well i try and stay mentally active but miss sports.
I think to be on top of this whole AA thing- is be mentally strong, good amount of family support and ofcourse good set of physicians.

Well i hope i can discuss more abt cGVHD and other issues abt AA.

I hope other ppl can share their experiences .
Best Regards
Alex

[Alex]

Ruth, i wanted to know wat you meant by not on any drugs...well does it mean you are not on CSA or any other immuno-suppressant?

[Ruth Cuadra]

Yes, I was off all immunosuppressants by about the 5th year. I switched from CSA to CellCept in the 2nd year because it was considered to be better for controlling my cGVHD, which it was and with no side effects. The taper off CellCept was slow and took about two years.

Now I take only 10mg/day of prednisone, which I need because my adrenals don't produce enough naturally (a condition that pre-dates my transplant), synthroid, prometrium (hormones), neurontin (for muscle cramps), and ambien (for sleep).

Regards,
Ruth