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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Shingles? Have you asked about Acyclovir?

by P. Aaron on Thu Apr 28, 2011 2:32 am

After being cursed with Multiple Myeloma in October of 2009, I have been at the University of Michigan in Ann Arbor in a clinical multiple myeloma study since 12/2009. I receive 15mgs of Revlimid (21 days on, 7 days off), bi-weekly infusions of carfilzomib (I can't remember the dosage), and 15mgs of dexamethasone once weekly, even on 'off' weeks. (that's why I am posting this at 2:AM Michigan time...hah!)

My (bad) Myeloma numbers have been trending lower and recently moved from .5 to a .4 after 8 months of treatment on a lower dose of Revlimid. It has been a slow slog and I have not ruled out SC transplant but, I would like to avoid it if possible.

Anyhow, upon reading the many posts here, I found numerous mentions of shingles and only one mention of what has been prescibed to me to prevent them: Acyclovir (zovirax) I'm going off the names on my prescription bottle here.

Acyclovir was one of the medicines I was prescribed to combat shingles. For the rashes that can accompany taking Revlimid, I also take a dose of Allegra, and use a topical creme when neccesary. The rashes themselves for me have not been that severe. YMMV.

I have noticed one added benefit from taking Acyclovir; My teeth while all intact are not the straightest and I occasionally bite the inside of my mouth which used to cause days if not an entire week of excruciating mouth pain (break out the Oragel!). The Acyclovir has made these bites heal up and I suffer none of the pain. A side effect to be sure...FWIW.

This seems to work for me and a few fellows in my study group. Your doctor and you will know what's best. I'm just throwing it out there.
Don't act your disease, defy it!

P. Aaron
Name: P. Aaron
Who do you know with myeloma?: Me
When were you/they diagnosed?: 10/2009
Age at diagnosis: 49

Re: Shingles? Have you asked about Acyclovir?

by HuskerFan on Thu Apr 28, 2011 2:38 pm

My husband has taken Acyclovir (800mg. twice a day) since he started his chemo back in July of 2010. At first, he was taking a total of 800mg. a day, but the oncologist increased it in Sept. 2010, I believe. My husband had shingles about 28 years ago, and would *prefer* not to go through that again!

HuskerFan

Re: Shingles? Have you asked about Acyclovir?

by NSTEWART on Sat Apr 30, 2011 1:20 pm

I am currently recovering from an outbreak of shingles on my scalp, forehead and one eye. I realized what was going on very quickly and was started on 800 mg of Acyclovir 5 times a day immediately. I had some stinging pain at first, but mostly itching. Because I recognized what it was so quickly and started treatment so fast, it seems like I won't have any long lasting problems. One of the things that did happen, though, was I developed swelling in my eye and between the cornea and my eye. I am now using a steroid drop in that eye 4 times a day. The opthamologist said that I would be on that for the long term because the eye is very resistant to treatment of shingles. I just finished taking the Acyclovir.

My oncologist told me that about 50% of his multiple myeloma patients develop shingles at some point. He is an multiple myeloma specialist at a major cancer research center.

Nancy

NSTEWART
Name: Nancy Stewart
Who do you know with myeloma?: self
When were you/they diagnosed?: 3/08
Age at diagnosis: 60

Re: Shingles? Have you asked about Acyclovir?

by HuskerFan on Sat Apr 30, 2011 4:07 pm

Nancy,
Had you been taking Acyclovir prior to the shingles outbreak? If about 50% of people with multiple myeloma do develop shingles, I'm puzzled as to why the oncologists do not prescribe it for all of their multiple myeloma patients. I'm sorry that you have had to endure shingles and the eye problem because of it. I hope that everything goes as well as possible for you.

HuskerFan

Re: Shingles? Have you asked about Acyclovir?

by NSTEWART on Wed May 04, 2011 10:13 am

I was taking Valtrex for a short time after my ASCT last year, but my doctor took me off of all my medications within a month of the transplant. I had developed a really resistant full body rash that they couldn't seem to figure the cause. Because of that my oncologist tried to eliminate everything in my environment that could be a cause.

Fortunately the shingles have cleared up nicely and I don't seem to have any long lasting effects from them. I'm glad that I recognized what was happening and got treatment immediately.

NSTEWART
Name: Nancy Stewart
Who do you know with myeloma?: self
When were you/they diagnosed?: 3/08
Age at diagnosis: 60


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