Any Suggestions:

[donna j.]

Hi All
Its been a while. When thing were very good, I was superstitious and didn't want to announce it. When things have been so-so, I didn't want to tell anyone cause I thought I was close to good news. And when thing were not the best, hey who wants to hear about that. So I am almost 3 yrs out. My allo transplant took place 1/28/12. My current issue is managing GVHD and mobility.
I have reduced Prednosine to 1.5 mg a day. Last January it was believed GVHD had gone into my lungs and I was put on 70 mgs along with a FAM study. (6mos on Fluticasone, azrithromycin and montelukast). I had chronic skin GVHD and had been on 20mg and less of Prednisone since stopping Cyclosporine in February 2013. I was previously on it for acute gvhd of the skin for a few months and 2 yrs prior for PMR (polymyalgia rheumatic). I remain on the FAM drugs though reduced the Fluticasone to 220mcg from 880.
Tapering has been very painful. I reduce at .50mgs now.
I began losing muscle strength in April. Now in December I still cannot climb stairs well, walk or stand. There does not seem to be any muscle strength. I am in Physical Therapy and Acupuncture. I have seen an Orthopedic dr., a Rheumatologist, and a Neurologist and have had cat scans of my middle and lower back. Their response are PT and pain pills.
My hope is stopping the Prednisone will allow my body to properly feed my muscles. My questions are:
1. Is this possible? Will I gain muscle strength back?
2. What Is a better med for GVHD. I told my dr. no more Pred. She wants me to stay on for at least the holidays and is afraid the GVHD will move to my organs.
3. Is it worth seeing an Endocrinologist for my muscular problems?
4. Any alternative medicine suggestions?

P.S. My ferritin has moved back and forth between 5000-2350. I have had 8 phlebotomies, but the numbers go back up. Dr said it was due to the GVHD and not to worry, lots of people have higher numbers. No transfusions since 11/12 following my blood flipping over. All numbers good. EOS a little high.
Peace
Donna J.

[Julianna]

Hugs Donna, thanks for sharing your journey. Difficult times. I hope someone out there can shed some light on some of your issues. We're with you xo

[mausmish]

Hi Donna,

I know what you mean about posting. Did your PMR predate your transplant? My mother had PMR and was on prednisone for 20 years. Early on, she also had temporal arteritis and was on 60mg Prednisone. She ended up in a wheel chair for nearly a year but was fine again once the Pred was tapered back down to 10mg. Her rheumatologist wanted to taper her further but each time she went below 10mg, she became weak and was in pain. She ended up staying on 10 after many attempts over the years. I understand why you want to be off of it but you may need it for the PMR. Perhaps as a test, try increasing to 10mg temporarily (a few weeks) and see if that helps the weakness? If it doesn't help taper back down and try to get off it. If it does help, taper to the point where the weakness/pain recurs and find your ideal level. When you taper, do it slowly, 1mg every week or two.

For GVHD, are you near a facility that offers photopheresis? It didn't help my skin and eye GVHD but it worked wonders for some of the other patients who had liver, gut, and/or lung GVHD. It may take six months or more to work but does not have the nasty side effects like steroids and immunosuppressants. Twice weekly is common to start and it takes about 4 hours. If you have improvement, the time between visits can be increased. If you have good veins, a port is not required.

My doctor also said high ferritin can be from GVHD inflammation and was not worried about it - did not even treat. It dropped on its own eventually.

UVA1 phototherapy has been most helpful for my skin. It takes only 15 minutes per session.

There's more detailed information in my blog, http://mausmarrow.com..

Congratulations on your upcoming 3rd rebirthday! The journey continues.

Karen

[DanL]

Donna,

Congratulations on the 3rd year. Muscle mass and strength does improve with prednisone tapering. The PT, steady exercise, even a little, and good diet help a little as well. It does take a while to ramp back up though. I think that a visit to the endocrinologist is a good idea. I have been placed on hydrocortisone as I was experiencing some adrenal insufficiency, and it seems to be a little gentler than prednisone. Hydrocortisone does not really have any anti-gvhd qualities from what I understand though, so you may need another alternative to control the gvhd.