My wife had a stem cell transplant (SCT) in July. They put her on valacyclovir for about 60 days. About four months after transplant, she developed a rash that looked a lot like chicken pox / shingles. The rash started in one place, but has since spread to both sides of her body, which (as I understand it) shingles does not do.
Her regular doctor wasn't (and isn't) sure what it was, but he put her on a valacyclovir-like drug. This seems to have had a strong impact on the severity of the rash, although it continues to spread after 1 week. She's had no other chicken pox / shingles symptoms (e.g. pain, fever) and is doing very well.
My question is more of a practical one: Is she contagious? Her stem cell transplant doctor claims that one cannot get chicken pox twice, even after an autologous stem cell transplant. I don't understand this since I thought the immune system was "re-set" by the transplant. This doc also says that there are forms of shingles that involve both sides of the body, but that they are severe and serious.
The contagious issue is important since the local infusion center (where she gets Zometa) doesn't want her to come in for her monthly treatment until she is not contagious. If this is chicken pox / shingles, how long would that be? I've heard that stem cell transplant patients remain contagious longer than "regular" people.
Forums
10 posts
• Page 1 of 1
-
zephyrus - Name: Lee
- Who do you know with myeloma?: wife
- When were you/they diagnosed?: Feb, 2012
- Age at diagnosis: 64
Re: Chicken pox / shingles post transplant - contagious?
Don't have an answer, just thought it odd to be on Valtrex (valacyclovir) for only 60 days. I am on it for 6 months post stem cell transplant.
-Chris
-Chris
-
ninja performance - Name: Chris Hill
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 08/04/2011
- Age at diagnosis: 43
Re: Chicken pox / shingles post transplant - contagious?
Chris,
Yes, I agree. After some research, it does seem not to be standard. One paper said 12 months.
I'm not sure why they did this, but its too late for it to matter.
Yes, I agree. After some research, it does seem not to be standard. One paper said 12 months.
I'm not sure why they did this, but its too late for it to matter.
-
zephyrus - Name: Lee
- Who do you know with myeloma?: wife
- When were you/they diagnosed?: Feb, 2012
- Age at diagnosis: 64
Re: Chicken pox / shingles post transplant - contagious?
My understanding is that you can get shingles on both sides of the body, but it is unusual. Shingles follows your nerves, so there they have a streaking pattern to them. When I had them many years ago, you could see the pattern from my spine as they wrapped down around to the front of my body.
I was also told that someone who has never had chicken pox can catch them from someone who has shingles. But you don't "catch" shingles – it's something you have in your system if you have had chicken pox. Perhaps the infusion center may be worried that you will give chicken pox to someone who has never had them.
Lyn
I was also told that someone who has never had chicken pox can catch them from someone who has shingles. But you don't "catch" shingles – it's something you have in your system if you have had chicken pox. Perhaps the infusion center may be worried that you will give chicken pox to someone who has never had them.
Lyn
-
Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Chicken pox / shingles post transplant - contagious?
I worked with someone who had shingles and was told that you can get chickenpox from them, I think the blister may have live virus in them, but I am not completely sure about that.
The other thing is that I have had an auto and an allo and have been told I have to have all my childhood immunisations again because I would have lost my immunity to them in the transplant process.
Libby
The other thing is that I have had an auto and an allo and have been told I have to have all my childhood immunisations again because I would have lost my immunity to them in the transplant process.
Libby
-
LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Chicken pox / shingles post transplant - contagious?
The infusion center is worried, legitimately, that someone with a compromised immune system could catch chicken pox or shingles.
-
zephyrus - Name: Lee
- Who do you know with myeloma?: wife
- When were you/they diagnosed?: Feb, 2012
- Age at diagnosis: 64
Re: Chicken pox / shingles post transplant - contagious?
It would definitely be very unusual for shingles to occur on both sides of the body at once, though not impossible. There is a disseminated form of varicella zoster (the virus that causes shingles) where the lesions can develop all over the body, but patients are usually much sicker than it sounds like your wife is.
In situations like these where the cause of the rash isn't clear-cut, I often refer to a dermatologist for a skin biopsy, as there are a number of potential causes for rash in the post-transplant period, and sometimes a biopsy is needed to determine the cause.
If it is shingles, then she is potentially contagious to immunocompromised, pregnant, or "chicken pox-naive" patients until the lesions are completely scabbed over. This varies from patient to patient, but often takes a couple of weeks.
In situations like these where the cause of the rash isn't clear-cut, I often refer to a dermatologist for a skin biopsy, as there are a number of potential causes for rash in the post-transplant period, and sometimes a biopsy is needed to determine the cause.
If it is shingles, then she is potentially contagious to immunocompromised, pregnant, or "chicken pox-naive" patients until the lesions are completely scabbed over. This varies from patient to patient, but often takes a couple of weeks.
-
Dr. Adam Cohen - Name: Adam D. Cohen, M.D.
Beacon Medical Advisor
Re: Chicken pox / shingles post transplant - contagious?
Before my multiple myeloma diagnosis I believe I had a disseminated HSV 1 illness.
I had lesions all through my lip / mouth / throat / nose / face / groin / chest / armpit / thighs. It was super awful and I had a high fever for days, and really bad headache. One of the worst things I've lived through I think. Someone at a party with a cold sore drank out of my water bottle and I had never been exposed to this virus before (never had cold sores as a kid) The virus attacked nerves in my bladder and facial nerves (which came out later on).
At the time they could not figure it out. Doctor said it was the type of reactions they see in newborns. I was put on high dose of Valtrex at the time.
Shortly after that I had a shingles outbreak. The shingles was like a one inch wide strip of rash that sort of ran along one rib. It was only on the front, One side of my body. It was intensely itchy for days before the rash showed up! Then the rash started as a small spot that grew bigger. When the rash appeared I had a mild fever and felt sick, but could not put my finger on what was wrong with me (no running nose cough, nausea etc).
Hindsight of course is 20/20. A few years later I was diagnosed with multiple myeloma, so I figure I was already immune-compromised when this happened.
In my case, I have been on antiviral since my diagnosis (almost three years). I take Famvir (famciclovir) daily and will likely stay on indefinitely (per recommendations from infectious disease doctor I met with).
I had lesions all through my lip / mouth / throat / nose / face / groin / chest / armpit / thighs. It was super awful and I had a high fever for days, and really bad headache. One of the worst things I've lived through I think. Someone at a party with a cold sore drank out of my water bottle and I had never been exposed to this virus before (never had cold sores as a kid) The virus attacked nerves in my bladder and facial nerves (which came out later on).
At the time they could not figure it out. Doctor said it was the type of reactions they see in newborns. I was put on high dose of Valtrex at the time.
Shortly after that I had a shingles outbreak. The shingles was like a one inch wide strip of rash that sort of ran along one rib. It was only on the front, One side of my body. It was intensely itchy for days before the rash showed up! Then the rash started as a small spot that grew bigger. When the rash appeared I had a mild fever and felt sick, but could not put my finger on what was wrong with me (no running nose cough, nausea etc).
Hindsight of course is 20/20. A few years later I was diagnosed with multiple myeloma, so I figure I was already immune-compromised when this happened.
In my case, I have been on antiviral since my diagnosis (almost three years). I take Famvir (famciclovir) daily and will likely stay on indefinitely (per recommendations from infectious disease doctor I met with).
-
lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Chicken pox / shingles post transplant - contagious?
I had a stem cell transplant 3 years ago (September 2009). I am 71 years old and I have always taken acyclovir to prevent getting shingles. I had the chicken pox when I was about 9 years old, but I was led to believe that the stem cell transplant wiped all my immunities out. I had to start taking all my immunization shots 1 year after my stem cell transplant. I took a pneumonia shot at 6 months after my stem cell transplant. I currently take a gamma globulin drip once a month now, and that keeps my immune system up and ready. My stem cell transplant doctor told me that some people get this gamma globulin drip for the rest of their life.
I'm doing great and nothing really serious has happened to me. I have dermatitis, but that is under control. I just got my flu shot and the week before I finished taking all of my immunization shots (just like I was a baby) that had been scheduled for me over 3 years. I've finished with those and don't need anymore for now.
I didn't know what to think about my condition when I found out that I had multiple myeloma, but I met an 82 year old man that had had multiple myeloma for 10 years, and he wasn't recommended for a stem cell transplant. He had been maintaining on chemo for 10 years. I figured at that point that I could do the same thing and yet I was going to have the stem cell transplant. My outlook was great after learning about him. I figured that if the SCT didn't work out that I could just maintain.
Hope everything is working out for your wife. It just takes time. For over 2 years I was very careful as to where I went and stayed away from children and public places where you could catch something. If I spotted someone in a store coughing, then I would go to another aisle. I was very careful and didn't allow just anybody into my house. They wanted to send a home care worker to my house, but I told them that they didn't know who would come out and whether that someone would be sick or be around sick kids and would carry diseases into my house and around me. I WAS very very careful, but I'm still here.
So, stay on the computer, stay away from blogs (they got to be depressing) and order anything you can from online. It is better than going into a store and catching something.
Martha
I'm doing great and nothing really serious has happened to me. I have dermatitis, but that is under control. I just got my flu shot and the week before I finished taking all of my immunization shots (just like I was a baby) that had been scheduled for me over 3 years. I've finished with those and don't need anymore for now.
I didn't know what to think about my condition when I found out that I had multiple myeloma, but I met an 82 year old man that had had multiple myeloma for 10 years, and he wasn't recommended for a stem cell transplant. He had been maintaining on chemo for 10 years. I figured at that point that I could do the same thing and yet I was going to have the stem cell transplant. My outlook was great after learning about him. I figured that if the SCT didn't work out that I could just maintain.
Hope everything is working out for your wife. It just takes time. For over 2 years I was very careful as to where I went and stayed away from children and public places where you could catch something. If I spotted someone in a store coughing, then I would go to another aisle. I was very careful and didn't allow just anybody into my house. They wanted to send a home care worker to my house, but I told them that they didn't know who would come out and whether that someone would be sick or be around sick kids and would carry diseases into my house and around me. I WAS very very careful, but I'm still here.
So, stay on the computer, stay away from blogs (they got to be depressing) and order anything you can from online. It is better than going into a store and catching something.
Martha
Re: Chicken pox / shingles post transplant - contagious?
Stem cell transplant doctor would be wrong. Speaking from experience. I had two verified cases of chicken pox. It is very rare. The doctor who diagnosed it originally said it was impossible until he saw me walk into his office the second time with it.
10 posts
• Page 1 of 1