Last Friday I began feeling tingling and intense pain on my torso, on my side, and on my back. The pain was pretty darned intense, and I couldn't stand anything brushing against my skin. Given that I'm at the end of my Revlimid cycle and my absolute lymphocyte count is usually around 1.1 (as a blood test on Monday confirmed) my first thought was ... oh no, shingles!
I went to urgent care the following morning and the doc there agreed with me; it probably was shingles, and she put me on acyclovir.
It's now Wednesday, and still no rash. The pain is still there and so is the hypersensitivity, but it is greatly lessened. I haven't had to take any pain meds today and the fever and general 'icky' feeling are pretty much gone.
Question, because I can't find anything about this on the 'net: can acyclovir, taken quickly enough, actually prevent the actual rash?
I did find references to 'shingles without a rash,' which I think I had to deal with a year or so ago, but nothing about acyclovir taken early enough actually preventing a rash.
Anybody know anything about this, or am I doomed to break out?
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Impact of treating shingles early with acyclovir
Dianaiad,
I'm so sorry you had shingles - they are awful no matter what. EJ is on Ninlaro (ixazomib), and he takes acyclovir twice daily to prevent shingles. I know when I had shingles, I started acyclovir before the rash broke out, and it definitely lessened the symptoms.
Feel better!
Lyn
I'm so sorry you had shingles - they are awful no matter what. EJ is on Ninlaro (ixazomib), and he takes acyclovir twice daily to prevent shingles. I know when I had shingles, I started acyclovir before the rash broke out, and it definitely lessened the symptoms.
Feel better!
Lyn
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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: Impact of treating shingles early with acyclovir
My experience with shingles in 2006 began with pain in my back near my shoulder blade. Unfortunately, I thought I had simply pulled a muscle and ignored the pain until day 5. Then it occurred to me to check my back using two mirrors. I saw a rash and wondered if I had shingles. I searched online for images of shingles and the images matched.
So I don't know exactly when the rash appeared, but it was definitely present by day 5. The rash turned bubbly into blisters after that.
So I don't know exactly when the rash appeared, but it was definitely present by day 5. The rash turned bubbly into blisters after that.
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cdnirene - Name: Irene S
- Who do you know with myeloma?: me
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 66
Re: Impact of treating shingles early with acyclovir
A friend had shingles and experienced the typical intense pain. Much later, her husband started to feel some tingling, but no open sores. Doctor agreed to start him on acyclovir. His symptoms were uncomfortable but not intense.
Short answer: I'd stay with the acyclovir.
Short answer: I'd stay with the acyclovir.
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faithoverfear - Who do you know with myeloma?: me
- When were you/they diagnosed?: Sept 2014
- Age at diagnosis: 63
Re: Impact of treating shingles early with acyclovir
Update:
Regarding the question of whether beginning acyclovir early (at the first sign of tingling and pain, and before any sign of a rash) can prevent a rash, the answer in my case is, well, not so much.
(sigh)
I'm hoping that the acyclovir will shorten the experience, but I'm getting the whole experience. Now, if it were only not in a place guaranteed to make sitting in a car for two thousand miles a literal pain in the butt, I'd be a bit happier. (sigh)
My timing is, as usual, perfect.
Regarding the question of whether beginning acyclovir early (at the first sign of tingling and pain, and before any sign of a rash) can prevent a rash, the answer in my case is, well, not so much.
(sigh)
I'm hoping that the acyclovir will shorten the experience, but I'm getting the whole experience. Now, if it were only not in a place guaranteed to make sitting in a car for two thousand miles a literal pain in the butt, I'd be a bit happier. (sigh)
My timing is, as usual, perfect.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Impact of treating shingles early with acyclovir
Hard to deal with that uncertainty.
Two people I know who had the outbreak were in significant pain.
One person I know started treatment at the first sign of tingling ... "not a big deal"
I had sensitivity and one blister forming. Started treatment and the blister went away completely. No real pain at all. Better safe than sorry.
Just my two cents worth. Hope the perspective helps.
Enjoy all that you can.
Two people I know who had the outbreak were in significant pain.
One person I know started treatment at the first sign of tingling ... "not a big deal"
I had sensitivity and one blister forming. Started treatment and the blister went away completely. No real pain at all. Better safe than sorry.
Just my two cents worth. Hope the perspective helps.
Enjoy all that you can.
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faithoverfear - Who do you know with myeloma?: me
- When were you/they diagnosed?: Sept 2014
- Age at diagnosis: 63
Re: Impact of treating shingles early with acyclovir
Hi Diana.
It is possible to have shingles without the blisters. The first time I had shingles was two years ago, soon after starting Velcade as maintenance therapy. It started as a small rash on my right shoulder but soon was full out blisters and pain across my shoulder, down my breast bone and across the back of my right shoulder. Spray-on Caladryl helps. I have scars from the blisters and occasional residual aches in my shoulder.
Earlier this summer, I had a small itchy rash on my spine, which I at first thought was insect bites because I had been working in my yard. Nope, shingles. But it never blistered and never progressed to the nerve pain. It went away in about a week. Again, I used Caladryl for the itching.
When I started Velcade, my then oncologist never said anything about taking acyclovir. He retired in December, and my new oncologist told me that you are supposed to take it when you are on Velcade. I resisted because everything upsets my stomach. However, when I had the small shingles outbreak earlier this summer, I gave in and started it. Within two weeks, not only was it affecting my guts, but it increased the Velcade-related fatigue to the point of malaise. (Not my word; it's one of the listed side effects of acyclovir.) So I stopped taking it. The malaise went away.
I'll risk getting shingles again rather than live every day feeling the malaise.
Dana A
It is possible to have shingles without the blisters. The first time I had shingles was two years ago, soon after starting Velcade as maintenance therapy. It started as a small rash on my right shoulder but soon was full out blisters and pain across my shoulder, down my breast bone and across the back of my right shoulder. Spray-on Caladryl helps. I have scars from the blisters and occasional residual aches in my shoulder.
Earlier this summer, I had a small itchy rash on my spine, which I at first thought was insect bites because I had been working in my yard. Nope, shingles. But it never blistered and never progressed to the nerve pain. It went away in about a week. Again, I used Caladryl for the itching.
When I started Velcade, my then oncologist never said anything about taking acyclovir. He retired in December, and my new oncologist told me that you are supposed to take it when you are on Velcade. I resisted because everything upsets my stomach. However, when I had the small shingles outbreak earlier this summer, I gave in and started it. Within two weeks, not only was it affecting my guts, but it increased the Velcade-related fatigue to the point of malaise. (Not my word; it's one of the listed side effects of acyclovir.) So I stopped taking it. The malaise went away.
I'll risk getting shingles again rather than live every day feeling the malaise.
Dana A
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Impact of treating shingles early with acyclovir
Update ... for what it's worth ...
The pain was pretty annoying, and encompassed my left side from just under my breast, around to the back. and all the way down to the back of my thigh. It wasn't excruciating, but I was constantly aware of it and couldn't stand to sit or lie down for very long. Didn't need the heavy pain meds I was given, though, and the acyclovir seemed to limit the actual rash to about a week ... and pretty mild, all things considered. WHERE that rash was was incredibly inconvenient, not to mention embarrassing to talk about and difficult to treat ...
But again, it was fairly mild and didn't last long. The nerve pain lasted for close to six weeks, though, before it completely went away.
I'm now on acyclovir, 200 mg, once a day to prevent a recurrence. I did that for a year following the stem cell transplant, come to think of it.
I don't think I'm any more tired than I ordinarily am just taking Revlimid. It's a 'used to it' sort of thing now, and I just pace myself. And give myself permission to 'go down' when I need to. I still get everything done I want to do.
Shoot, folks, I'm coming up to my three year stem cell transplant anniversary, and the only 'side effect' that has bothered me very much at all has been the shingles.
No complaints here!
The pain was pretty annoying, and encompassed my left side from just under my breast, around to the back. and all the way down to the back of my thigh. It wasn't excruciating, but I was constantly aware of it and couldn't stand to sit or lie down for very long. Didn't need the heavy pain meds I was given, though, and the acyclovir seemed to limit the actual rash to about a week ... and pretty mild, all things considered. WHERE that rash was was incredibly inconvenient, not to mention embarrassing to talk about and difficult to treat ...
But again, it was fairly mild and didn't last long. The nerve pain lasted for close to six weeks, though, before it completely went away.I'm now on acyclovir, 200 mg, once a day to prevent a recurrence. I did that for a year following the stem cell transplant, come to think of it.
I don't think I'm any more tired than I ordinarily am just taking Revlimid. It's a 'used to it' sort of thing now, and I just pace myself. And give myself permission to 'go down' when I need to. I still get everything done I want to do.
Shoot, folks, I'm coming up to my three year stem cell transplant anniversary, and the only 'side effect' that has bothered me very much at all has been the shingles.
No complaints here!
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
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