Gilenya & worthless pcp

[vidalouise]

So, my neuro is starting me on Gilenya. I go this Thursday for cardiac and opthamalogic testing so they can have baselines to monitor side effects. Since it is an immunosuppressant if you haven't had the chicken pox or the vaccine you have to get the vaccine and then wait a month to start the drug.

Well I call my neuro to tell him I've never had the chicken pox or the vaccine. They call back and tell me to get the vaccine from my pcp. So I call the pcp and am told that they don't give any vaccinations, call the health department. So I call the health department, but they won't give me the vaccine because I'm too old. Apparently they only give the chicken pox vaccine to children.

I have called my neuro and explained.  He is very nice and I'm sure he can find somebody to do it at the university hospital it is at.

It just gets so frustrating though. How does a pcp not give any vaccinations? And even better, how can they just act like it's no big deal if I can't go on this medication because I can't get the vaccine? Like I said, Im sure my neuro will figure it out. But I'm still pretty irritated -_-

[wildcat2x]

Hello.

I was looking up immune modulator to see what the definition was and the definition I kept running into was: Immunomodulation modifying the way human body's defense system works.  I wonder if my dr was using this term as it can have an effect on the number of white blood cells that are active in the body.  As this is suppressing the immune system and changing its response that may be the reason I was confused.

I haven't had any problems with my white blood count.  The start of the school system usually brings with it colds, and the flu, but so far I have escaped experiencing them this year.  

So I'm sorry Mary is correct it is an immune suppresant.

Sincerely,
wildcat

[wildcat2x]

Thank you for your response.  I guess I'm getting a little confused.  My neuro stated it was immune modulatory, This website also states that but seems to describe an immune suppresant.  And it does sound like an immune suppressant when they test for white blood cell count.

http://my.clevelandclinic.org/Documents/Multiple_sclerosis_center/Gilenya-Summary-SEP2010.pdf

thanks again.
Wildcat

wildcat

[twopack]

Gilenya (fingolimod) works by keeping immune cells trapped in THE lymph nodes so they can't reach the central nervous system.  GILENYA IS A IMMUNOSUPPRESSANT.  The interferons and Copaxone are immunomodulators.

Vida, I'm glad you are confident your neuro will get this straight for you.  Sorry if we put brakes on a vent you needed to release.  There is plenty about life with MS to get you to the point of frustration.  

Hope things settle down around the office and you can build some confidence in your team.
Mary

[wildcat2x]

Before I went on Gilenya, I had to do the heart rate test as well as give blood for the pre-gilenya test.  The blood tests were for the varicella for chx pox, the white blood count, and liver function.  They will continue to check for the whiteblood count every 3 to 5 months.  Gilenya is an immune modulator (it's not technically an immune suppressant).  Also once on Gilenya you cannot have a vaccination with a live virus (no nasal flu vacine or any other live virus vaccine, that is why you have to wait with the chx pox vaccine - it is a live vaccine.)

The dr.'s or state health not having this vaccine does not make a whole lot of sense, but then there is a lot of things in the world that don't make sense to me.

I went to a dr earlier this year but didn't stay as he answered a personal phone call when I was in my consultation and the office staff had great problems with verifying my insurance - they kept calling the prescription benefit line - not a good sign.

Good luck,
wildcat

[vidalouise]

I'm sure my neuro will find a way to get me the vaccine, and I think they have also scheduled blood work to check for antibodies. I just get so frustrated sometimes. They seem to try to make things difficult.  I just get irritated with the way they pass the buck. My pcp is essentially worthless, but no other doctors in the area will take me as a patient because I have too many medical problems. So I'm stuck with the one I got.

[HVAC]

Have you tried a minute clinic at a drug store?  My PCP does not have a lot of vaccines either because she is an individual practice.

Alex

[twopack]

Wow, this does put you in a bind.  Does your PCP see pediatric patients?  Vaccines are required for kids so I can't imagine they didn't do those.  But if they aren't Family Practitioners (maybe they are an internal medicine practice?) they might have a policy of not handling vaccines.  

There has been a lot of controversy in the private and legal sectors surrounding vaccines.  Some doctors might not want to risk the potential liability.  Sometimes doctors are forced to take a position that wouldn't really be their first choice.

I'm not sure you can substitute the shingles vaccine for the chicken pox one.  It is similar but I don't think it's exactly the same.  I've done some research lately as I was considering the wisdom of getting a shingles vaccine.  I can tell you that one is frozen until it is mixed by a pharmacist and then must be injected within 30 minutes.  It takes a plan.

So I have a script to get the shingles vaccine but I haven't been able to actually get it filled because I've been on steroids off and on since it was written.  An immune system suppressed by steroids doesn't do a great job of making antibodies - so I wait.  Besides, these are live vaccines and I'm not up to taking a lot of risk right now.

Is there any possibility someone wound be willing to draw blood for a titer?  It is possible you had a mild case of chicken pox and developed antibodies without even realizing you were sick.  You may not really need the vaccine.  

The immune system is far from predictable.  For example, I had all 3 types of measles as a kid plus was vaccinated with MMR as a young adult and still NEVER developed enough antibodies to show immunity in a titer.  

You might actually be much better off working with your neuro on this one.  I would think there is a specific protocol to cover lots of possibilities since Gilenya is so recently released for use outside clinical trials.

Please let us know what you find out.  I'm sorry this is presenting such hassles for you but know that the sharing of each individual experience often ends up helping us all.  Good luck with this leg of your journey.

Mary

[Lulu54]

What?  A pcp who doesn't give vaccinations?  That makes absolutely no sense.  Perhaps the person you talked with didn't understand the question?

The Varicella vaccine is routinely available - I'm wondering is the vaccine for Shingles would serve the same purpose?  

Taking this precaution is very important because the two deaths that were reported during the trials with Gilenya occured in people who had not had Chicken Pox, from what I remember.  

Obviously their lack of concern about this important vaccine is just evidence of their lack of knowledge about MS and the treatments.  That is another example of why it is so important to have an MS specialist handle our care, if possible.

good luck,
Lulu