Bone Marrow Transplant Support Group

Hi Lucia, It's been a long time! I'm glad you're mom is on the road to recovery.

I'm 18months post transplant. I've been on Vfed for over a year, along with several much more nasty meds like Prednisone. I don't think we really have much of a choice, although I've gotten tired of waiting for a tapering schedule and began to SLOWLY do it myself, and kept my doctor informed.

I feel great and am happy to be alive. I've had many side effects but never know if they are / were from the meds, meds interacting with each other or are from the GVHD. I like to just blame everything on Prednisone.

My side effects...
Vomiting (so hard I once broke a rib).
Blacking out when standing up too quick.
I became diabetic (now going away since I've tapered meds)
Severe screaming hand, foot and leg cramps lasing hours.
Darkened skin (people ask where I got such a nice tan)
My hairline receded 5 inches in about a week.
Loss of muscle (barely able to climb stairs at one point)
Loss of 80 pounds.
Spinal bone spurs.
Eyes that feel like they have tobasco covered sand in them.
Blurred vision and near blindness in one eye.
100% loss of hearing in one ear, non stop ringing.
Sore gums.
Complete body hair loss (women envy my legs).
Head aches.
Lung infections.
Absolutely no sleep without medication.
Severe paranoia nearly causing divorce.
Psychotic behavior.
Swelling feet, ankles and calves.
Anything mildly spicy burns my mouth.
Sores on my tongue and lips.
Dry flaky skin (like dandruff only on my face arms and legs)
Paper thin skin that breaks open and bleeds if I bump anything.
Abnormal bruising.
Sores that won't heal.
Paper thin splitting and cracking fingernails.
My nose has been running solid for 11 months.
Unexplained fits of rage. I know its happening but cant stop it.
Hiccups when ever I eat, food doesn't want to go down.

Man, I sound like a wreck, but honestly feel pretty good. These side effects come and go, or build slowly so I get used to one before the next one starts on top of it. The worst part is everyone of them can be treated by ANOTHER medication. It took me a long time to start pushing for decreases as a cure, rather than accepting the new medication and new side effect.

Big hug to your mom. She's going to be fine. Get her to laugh at the side effects. That way there's always something to laugh about. They're going to be there as sure as the sun is going to rise in the AM.

Christian