I just joined this site today in hopes of giving and receiving support from others out there dealing with Leukemia in their families. Quick background: My Mom was diagnosed with AML at age 53 in 2008. The doctors feel they caught it in the "very early stages". Mom immediately did chemo and received a stem cell transplant from my uncle who was a 10 for 10 match. She is currently in remission and we are so thankful for that.
Over the last 18 months Mom has suffered through two very painful GvHD diagnoses. The first was GvHD of the liver. She was able to fight it and successfully wean off of all her immunosuppresant medications in time. Three months after weaning off all of her meds (April 2011), she began to have GvHD in her skin and muscles. This went on for several months b/c her doctors originally missed the GvHD diagnosis. We knew something was wrong and kept pursuing the doctors to look further and figure out what was happening. Finally, after months of persistance from our family, the doctors discovered that she had a rare form of GvHD in the muscles and skin. Today Mom's muscles are severaly atrophied (she can no longer stand up or walk without assistance, her hands and feet are also extremely weak). Has anyone experienced GvHD of the muscles to this extent? If so, were you able to overcome it with treatment and regular PT and OT?
I very much appreciate any kind of advice you can give!
I'm sorry to hear about her issues. I'm 52 and can imagine how she must hate needing help. I didn't have gvh of the muscles and haven't known anyone who's had it. I would say that if or when she's able to build muscles, start very slowly. She should ask to have PT. They could get her started on rebuilding muscles. She may need to start exercises without any weights. She shouldn't start anything thought without the docs approval.
Wow. I've wondered about GVH locating itself in muscles but I've never heard of it before. I had pretty much concluded it was something that just didn't happen. I'm so sorry your mom has to deal with it...it sounds horrible.
What are they doing to treat it? I'm thinking they probably have her on steroids and that doesn't help with the muscles a tinker's dam. It wastes muscle mass away and leeches calcium to boot.
Especially since this is so rare, I think I'd want to get with the number one person in dealing with muscle GVH. I'd check with the Hutch, MDA, Memorial Sloane Kettering, and anyone they might suggest. This definitely requires someone who's studied this and had experience treating it, if such a person exists.
I think I'd also sit down with the docs and talk about medications and physical therapy. Other than that, just find an expert.
Hi, chronic gvhd of the muscles isn't really of the muscles but of the fascia, the layer of tissue in between the muscles and skin--subcutaneous gvhd. It is sometimes called fasciitis and it is
quite debilitating and hard to treat, most often steroid resistant. Lots of physical therapy and exercise. I've just started doing ecp for it, in additon to the Gleevec I;m taking. Its no fun, esp as I have it around my ribs which makes breathing somewhat difficult.--- Get treatment for this as soon as possible before too much scarring of the fascia occurs.
ECP stands for extra-corporeal photopharesis. This procedure is done with a machine that takes a certain amount of blood, and filters out
the T-Cells.(I think). These are given a sort of medication that produces a chemical reaction when exposed to light. These medicated T-Cells are then exposted to light and the blood is
returned to the patient. This procedure takes about 3.5 hours for two consecutive days. A slow process.....some results in 3 months. I was told to expect 2 years of treatment. Should this treatment not help, I wlll soon lose the ability to walk , You say your's mother's muscles are atrophied--is the skin pinchable? If it is pinchable and loose, then it is no fasciitis. If the skin looks puckered and is drum tight, then it is likely cgvhd fasciitis. I've had the "kitchen sink thrown at me" in terms of various treatmnets but none have really slowed down the progression of stiffness.
Thanks all for your replies and well wishes. After reading everyone's responses, I went back to look more closely at the medical term for this form of GvHD in my Mom's medical records to make sure I was using the correct description. The medical term for her diagnosis is "myaphathy" due to chronic GvHD. Her doctors kept referring to her diagnosis as being "dermatomyositis-like". Her GvHD has attacked the capillaries which has caused her muscles to become severely atrophied. As far as the doctors can tell, the GvHD has not manifested in her muscles - I'm sorry for using the wrong terminology before. We are going to follow up with her doctors at the Mayo Clinic (where she was diagnosed with this form of GvHD) to get a second opinion on the treatment plan that her GA doctors are following. I am hopeful that they can give us some more information on what to expect.
lmr: I checked Mom's skin today after reading your latest response - it IS pinchable and has become looser since she began her treatment of Prednisone, Prograf, Cellcept and Gleevec over the last few months. Please keep me posted on your progress. I will keep you in my prayers and am sending well wishes your way.
I can't thank you all enough for your posts. For the first time in a long time, I don't feel alone.
Hello there, I am 26 and had a related match for my BMT in 12/02. I have GvHD of the skin and muscles - usually those two always go together. My muscles have atrophied as well but I have gained much back but I gained them back within a couple months time, now it has been almost 7 years since I recieved the dx of GvhD of the muscles and skin. I have scar like tight skin and my muscles aren't at all strong but I am working on seeing if I can get any of them back by trying out (AGAIN) an aggressive diet and excersise schedule. I used to be extremely athletic; soccer, dancer, musician, a runner, skier & snowboarder. I can not do any of those any more. So I am determined to get some muscles back to do something in there that I used to do. Getting up on the equipment and feeling better is really now what I am determined to do, so one day when I have some kids of my own I have SOME energy to run around with them without handing them off like I do as an Aunt ( ) hehe. Anyhow, please email me if you have any questions, I am sure I have a book load of answers and experiences for you. I was dx at 15 and relapsed again at 16 and had a BMT at 17, I had Hodgkins Lymphoma.
I'm 52 and had my an allo transplant for Non-Hodgkins Lymphoma 12/3/08. I had aGVHD within 3-4 months, and have had bouts with cGVHD since about 18 months after the transplant. It seemed each time we dropped the Prednisone down below 5mgs/daily, the GVHD flared up. Nothing too bad, just skin rash, dry eyes, dry mouth, some GI discomfort. Once my liver enzymes went through the roof, but they dow eventually. I was finally weaned off everything this last March and the GVHD came raging back. Rash all over, dry eyes like I've never had before, dry mouth with temporary sores after eating most food, GI issues, but what is really getting me down is it is attacking my fascia in my forearms and hands, and my lower legs and feet. I have cramps in one of those places most of the time, and about everywhere most of the night. I have not had a good night of sleep in a very long time. I'm back on 40mgs Prednisone, CellCept and ProGraf for about a month, with lttle difference. I started seeing a PT about 10 dyas ago, and I'm encouraged, but having difficulty getting out of a chair and am constantly exhausted. I'v rseen your responses in few of these communications, and just joined and felt like sharing.
Well, that truly sucks. What have your docs said about what's going on? Certainly patients can have GVH four years out but it should hopefully be diminishing by now. That's kind of crazy what you're dealing with.
Couple of thoughts. My mom had an issue with a vein or artery, artery I think, in her temple was kind of inflamed, if I remember right...something like that. The only treatment was Prednisone and she was on 5mg, maybe 10mg, per day for years before her death (completely unrelated).
Second, if you live in a medical marijuana state, you might find some help for your cramps there. If not, there's a med called Marinol which is essentially THC, the active ingredient in pot. One of the acceptable symptoms here in CO is cramps like you get with Muscular Dystrophy. If your cramps are like mine were, they are severe and debilitating. Although I got on MMJ for nausea, my cramps also went away when I started taking it.
Maybe there's a solution in there somewhere. I hope so.
Please keep us updated. Kick this thing's butt.
I just went through week long episode where all of a sudden my muscles in my legs and thighs started to ache and radiate pain. It got bad enough where I was not moving around at all. Went to my doctor she said it looked like a small case of GVHD. Now I just had been weened off prednisone. Well the time I stopped taking Prednisone coincided with uptick in muscle pain in my legs etc. Doctor put me right back on prednisone again with two big doses immediately and then leveling off to smaller dose. Well I have to admit it worked. All that went away and I am back walking around. Hopefully this info helps
I know I'm jumping in here late but I hope that I can at least comiserate. I am 68, 4 years out from SCT for MDS. Similar to Ga Girl, during the last 4 mos, I have been experiencing extreme muscle atrophy in my legs and very sensitive inner thighs. I have been in PT for a month but I don't see much improvement. I now use a walker at home and wheelchair when we go out. I have had terrible neuropathy in my legs and feet and eventually received a neurostimulator in my back which has helped. I also have lymphadema which was not well diagnosed because my legs were small...not what Drs normally see. The tightness in your skin, Sara, may be lymphadema. The treatment is not pleasant (wrapping) and the condition is permanent. I have been on varying degrees of Prednisone for 4 years, currently at 15 mg. I have appt with Oncologist tomorrow and plan to tell him that I'm heading in the wrong direction. My Drs are all in the St. Louis area. Every problem I have had since the transplant have been attributed to GVH. The good news is, Washington University Physicians (St. Louis) have recently hired a transplant Dr who specializes in nothing but GVH so we shall see. I also have an appt with a Dermatologist to see if he has any ideas about the tight, hard legs. As you all know, GVH can raise its ugly head in many ways. I think I have had it pretty much everywhere. I sure had hoped that after 4 years, it would have abated, or better yet, gone away.
IMR: I had 36 Photopheresis treatments and they helped(2 per week, per month).
I too was very active. In fact, I haven't felt as good as I did the day I went in for the transplant. Go figure.