Has anyone had their neurologist recommend getting the shingles vaccine while taking gilenya. Mine did and the results were not good. Within 10 days of the vaccine I broke out with tiny pimple like lesions on my face. It worried my doctor enough to have me discontinue the gilenya. I was not happy about this. Now I am waiting to try Tecfidera.
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The National Multiple Sclerosis website says this:
"The information about the shingles vaccine -- Zostavax -- isn't as clear-cut as it is for some other vaccines. In general, MS specialist neurologists do not recommend any live-virus vaccine for people with MS because live-virus vaccines can precipitate an increase in disease activity. However, Zostavax is somewhat unique because most people have had chicken pox earlier in their lives and therefore already have the virus in their bodies. If a person has had chicken pox or tests positive for the antibodies, this would likely be a safe and beneficial vaccine to take. However, each person needs to discuss the potential benefits and risks of this vaccine with her or his healthcare provider. In terms of the possible risks for a person with MS whose close family member receives this or any other live virus vaccine, MS specialists are not in agreement. This is another decision the person with MS needs to discuss with her or his physician."
http://www.nationalmssociety.org/liv...ons/index.aspx -
rsinger, did your doctor think that the pimples were actually shingles, or was it a side effect that you experienced from Gilenya?
If it's a side effect of G, then it makes sense to stop it. And at least you now (hopefully) have the protection offered by the shingles vaccine.
As MSer102 points out, it is controversial about using Zostavax or any live vaccine in an MS patient, especially anyone on a DMD. I got my shingles vaccine and my yellow fever booster a couple months before going on Gilenya. That said, I also got yellow fever and other live vaccines in the past when I had MS but was not on any DMD, and I was lucky I guess - never had any relapses related to the vaccines.
It's the same old story with MS. Every one of us is different so you have to talk with your own doctors and decide what is best for you.Comment
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shingles vaccine and gilenya
Thanks for the response. My doctor never got to look at the lesions. We immediately started Valtrex. He wasn't sure if the outbreak was from the gilenya or the shingles vaccine I had 10 days prior to the outbreak. The gilenya website says no live vaccine while on the medication but my doc said it would be okay. As a result he took me off the medication. I was doing so well on it and was very disappointed. Now we are uncertain as to whether or not the problem was from the gilenya or from the vaccine. I'm pretty convinced it was a bad call to get the vaccine. But as one might argue you could get shingles while on the medication anyway so why not get the vaccine. Off meds for a few months since I have a very mild case of MS. Will try Tecfidera next.Comment
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If the point of having the shingles vaccine is to allow you to take Gilenya, it makes me wonder why your doctor would have you get the vaccine and then take you off Gilenya after you went to the trouble to prepare yourself to be on it.
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Shingles and Gilenya
Yeah. This makes me wonder about these docs. It was my understanding that it is not recommended to get the vaccine while on gilenya but my doc said it was ok. It was just too coincidental for the lesions to not be connected to the vaccine. I want to try gilenya again but I don't think my doc will allow it because of the herpes encephalitis possibility. Too bad because I liked gilenya.Comment
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At least in my case, I did not have the shingles vaccine in order to take Gilenya. I knew I wanted to get the vaccine (shingles is a terribly painful condition, and the pain can continue for months after the rash has gone), and my doctor wanted me to take Gilenya, so I made sure I had the vaccine before starting Gilenya.
Theoretically when one is immune-suppressed, taking a live vaccine could cause you to develop the disease in question, because the germs in the vaccine could multiply unchecked in your body. The point of a live vaccine is to give you a very small dose of the germ so that your body develops the antibodies to fight off the "real disease" should you become exposed to it.
In the case of shingles, you already have the chicken pox virus in your body, left over from when you had chicken pox as a child (presuming you did have chicken pox when you were young). Then as you age and your immune defenses become weaker, the old chicken pox germs "break out" and cause shingles. So some neurologists believe it is OK to give the vaccine because it is nothing new to your body.
In fact, some neurologists believe shingles could break out anyway and be much worse in a non-immunized, immune-suppressed individual.
Others says the vaccine effect can cause an outbreak of shingles (or other effects of the chicken pox virus) in those on Gilenya or otherwise immune suppressed.
The vaccine manufacturer will of course take the most conservative approach in its package instructions, as they do not want to take the chance they would be sued for selling a product that "caused" such a problem.Comment
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gilenya and shingles vaccine
I agree with you. I do believe that the drug manufacturers do take a very conservative approach in order to protect themselves. It does seem that the outcome of the shingles virus could be far worse than the reaction to the shingles vaccine. I really believe my doctor felt it was prudent to get the vaccine even though I was taking gilenya. Again no one is certain what these lesions were. They didn't burn, itch or crust over. Also they did not follow the pattern along a nerve. It was just enough of a problem to have my doctor discontinue the gilenya. I don't think he is willing to retry the med. Will see him in Oct. for re-eval. Appreciate the response. This is a great way to communicate with others who share a common problem.Thanks again.Comment
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In addition to that the FDA now requires that drug companies submit a risk management plan with all new drug applications.Originally posted by rsinger View PostComment
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Risk Management Plan
I wasn't aware of this. Very interesting. Thanks for the info. It does clarify some things for me especially where the gilenya/shingles vaccine is concerned.Comment
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I received notification today that I have to take the vaccine before I can start G.
I have some serious concerns about taking a live vaccine. I know that if I want to take Gilenya, the shot is required.
Got a tough decision to make on this.Comment
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Have others also been told this? My neurologist never even mentioned getting the shingles vaccine before starting on Gilenya! Now both rsinger and Tracelyn are saying they were told they should get the vaccine first, or while taking Gilenya.
I told my neuro I needed to wait a couple months to start Gilenya because I wanted to get the shingles and yellow fever vaccines first, but otherwise I don't think he would have mentioned it.Comment
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From what I understand is that my antibodies for varicella was very low and since there is a chance of shingles with taking this, I have to take the vaccine and wait 4 weeks before taking my first dose.Comment
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http://www.pharma.us.novartis.com/cs...nya.pdf#page10
Read section 5.2 Infections and then 7. Drug Interactions, the vaccine section. Two people in the trial died of variations of herpes infections, namely disseminated primary herpes zoster and one herpes simplex encephalitis. So doctors who know the prescribing info are supposed to test your blood for the proper antibodies, then at least a month before starting Gilenya, vaccinate appropriately.Comment
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I am running into a real challenge locating a location that will give me the vaccine because of my age.
I am only 43 and they limit the earliest age at 60.
Unless my neurologist can help me out on this, I suspect that Gilenya will not be in my near future
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