Flul shot

[willowwoman7]

My pcp wants me to have the flu shot and my neurologist doesn't....I am soooo confused. I also have asthma/copd. Now I don't know what to do. Why did neuro tell me not to have flu shot? I keep reading that it is recommended for MS patients. Help!

[tammy197238]

I noticed numbness in my legs and weakness and after i was hospitalized for couple of days i went to get out of bed and fell straight to the floor.  I couldn't support my weight and within next couple of days I couldnt even move them.  They treated me with gamma globulins?? They didnt seem to help. I was in hospital for quite some time because they were afraid of it affecting my breathing...it didnt but it took me over 6 months to recover.  The neuro never even suggested that I repeat the nerve biopsy just stated that it showed demylination which was common with guillain barre.  I had also had some a test where they put the thin needle type things in my legs and it was abnormal also.  It was a very scary and humbling experience.  I was in a wheelchair and had to be taught how to transfer from wheelchair to toilet.  Had to go to physical therapy 3x weekly.  
I am on Avonex...and No I'm new to MS so I don't know alot about the DMDs but I read in the info that comes along with avonex that it can cause a drop infection fighting blood cells and lessen your ability to fight infection.
As you can see I'm a rambler also!   And the nurse called back and said for me to go ahead and get the flu vaccine so I guess the MS trumps the Guillain Barre.  Isn't it strange that I had 2 different autoimmune diseases?  I thought maybe they had misdiagnosed me in 2000 and it was an actual MS attack but neuro said same thing as COBOB.  First one was outside the CNS.  But other than those 2 attacks I can say I have been a very healthy person.  I guess when I get it though...i get it good!  

[twopack]

Please let us know Tammy.  I'm interested to hear.  Maybe the 2000 advice was because they were in the midst of the GB diagnostics?  I didn't think you were overly worried, just putting it out there in a wondering kind of way.

Sounds like you had clear microscopic evidence in the biopsy.  Bet somebody placed it very gently in the transport container - in direct contact with the ice.  I certainly understand not repeating whatever procedure would have been necessary to replace that damaged sample.  How come handling errors always seem to target hard to obtain samples, eh?

I think there have either been advances in research and medicine or declines in human health making us more susceptible to s*hit.  It seems GB often IS hard to diagnose and maybe harder than in the past.  Maybe it is like MS.  Doctors used to do an exam and give the diagnosis based on clinical evidence.  Now there are labs and imaging to do.  So much evidence to find and once the results are in; everyone is often just more confused.  Yup, could have been easier back when GB was known as 'ascending paralysis'.  That certainly said everything they needed to know about where to look and what to look for.  There's a different standard now.
  
Sorry for the ramble.  Hope it doesn't change your willingness to contribute to my rambler's store of facts when you hear back from the neuro.

Oh yeah, what DMD are you taking?  Copaxone and the interferon’s are immunomodulators.  They don't do anything that should make you more susceptible to infection.  Steroids, Tysabri and Gilenya are in the immunosuppressant realm.  More care needs to be taken with those of course.  You probably know all this but I wanted it 'on the record' here for readers who come along later and may not be aware.

Mary

[tammy197238]

I'm not worried...was just commenting on I never thought to ask about it at my last visit.  I know the neuro told me back in 2000 not to get flu vaccine due to probable guillain barre (probable due to the fact the nerve biopsy froze on its way to wherever it was going but they did say it showed nerve demylination) I also had spinal tap that showed elevated protein and MRI of spine and brain that was clear. Guillian barre must be as hard to diagnose as MS is!   Then i wondered if having MS diagnosis might override that recommendation of not having flu vaccine.
  I put a call in this morning too ask as I do work in a dr. office and even though it is ob/gyn office we see the ob's when they are sick.  I've have worked there for 6-7 yrs and have never gotten anything when co-workers have but now that i'm on a dmd it could be different because it states in the side effects it lowers your immune system.  I guess I will find out today!  I'm kind of interested to see what they say.  Have a good day all!!

[twopack]

Hi Tammy.  I would check with your neuro by phone or at your next visit.  November isn't too late for the vaccine at all.  The worst of the flu season usually hits later I think-maybe January?

Is it your history with Guillain Barre that worries you most?  I doubt the neuro would consider it a reason to avoid the vaccine.  There was a problem with a swine flu vaccine way back in the 70's that resulted in extra cases of Guillain Barre.  It wasn't a huge increase but the public usually has a strong negative emotional response to any problem with a vaccine.

There is a slight risk of developing Guillain Barre after receiving flu vaccines.  I believe it is in the neighborhood of one case per million persons vaccinated for the general public.  I don't know that your risk would be any greater but it would be best to check with your neuro.

Those of us with MS are usually encouraged to receive the vaccine because the fever produced by the flu itself could be so damaging.  It's good to remember that the flu we are trying to prevent is not a 24 or 48 hr "bug".  Influenza is a severe respiratory illness that produces high fevers and makes people very sick for 7-10 days.

If you call your neuro and get the okay to recieve the vaccine you can pick one of many different places that actually administer it.

Mary

[COBOB]

Guillain-Barre syndrome (GBS) is considered an acute peripheral demylenating polyneuropathy that is typically post-viral in origin.  This is something that happens outside the CNS.  You should talk with your neurologist and/or PCP, but I would thing that contracting Influenza would be far more risk that exposure to an inactivated particulate vaccine.

Yes, the vaccine "activates your immune system, but so does the live flu virus if you are exposed.  Since I fly on commercial aircraft and work in large group environments where "pressing flesh" is part of the job, the vaccine presents a lower and more controlled risk.

Bob

[tammy197238]

I never thought to ask my neuro about this at my appointment in August...but I would think waiting until November when my next appt is scheduled would be too late.  I have history of probable guillain barre in 2000 and diagnosis of MS in  2011.  

[Lulu54]

bump for yankeesfan4life.    I  hope this helps,  because this is an annual discussion about the flu shot.

[Lulu54]

Boosts of Vit C are on the no-no list from my docs - they say it will overstimulate the immune system.  Before anyone starts supplementing it is very important that you talk with your doctor.  

There's a reason why on all those "drugs you are taking" forms we fill out at the docs, they also want to know all of the OTC drugs, vitamins and other supplements.

We can't know everything and at some point have to trust the doctors we spend our time with to help us make these choices.

be well, stay healthy,
Lu

[Quixotic1]

With regard to taking supplements to boost the immune system against catching the flu we are caught in something of a Catch-22.  Both the Rocky Mtn MS Center and my regional MS center both have handouts warning against supplements that do stimulate the immune system.  While they may help us avoid the flu, they may also ramp up our MS.  Darned if we do and darned if we don't.

Vitamin C is specifically one on the list to avoid in higher doses for people with MS.  (I will try to find the list they print on a vast number of supplements and their known or theoretical effect on MS.)  This is an area we have to be careful in.

On the other hand making sure your Vit D status is adequate may be a complementary way to help yourself out.  Good research shows that an adequate Vit D status may be protective against viral infections and we know that it is beneficial in MS.  Tonya, I know Vit D is suspect in Sarcoid, so that puts you at especially another Catch-22.  It seems we can't win.

Good hygiene, less cotnact with large groups of people and quick prophylaxis are the best bets if we are left without immune protection against the flu.

Quix

[tonyad]

  AS always, it is best to speak w/ your doctors / Neuro's / Rheuny about this as they know best about Your Hx and you know even better about your past reactions!

    You pretty much know what's best for you in regards to your past experience, as well as speaking w/ Your Doctors, and I always go w/ that Gut feeling.......

Take Care,
~Tonya

[tonyad]

   So glad that you made an informed decision and that you TRUST your Neuro as well as yourself!
While many do Ok and some Neuro's say Ok.....Mine ans several others are very against it.  Perhaps, like you said, because we have other health issues than MS....

    But then again, My Aunt, lives in Washington State, her Neuro also Says..NO Way!
So, again I am gald that you have your decision that is best for you :)

     Good old fashioned hand washing, staying aways from those who are sick, And eating Health diet as well as a little boost of Vitamin C   Will help out :)

Take Care,
~Tonya



take Care,
~Tonya

[tjj3761]

I am so glad this topic was brought up.  Quix what is your opinion on my particular situation.

I really do not know what to do this year about the flu shot (since the H1N1 has been added into it).

Last fall I did get the regular flu vaccine with absolutely no problems.  The following week, I did get the H1N1 and I was SOOO sick, I felt like it was all over.  I should have gone to the emergency department.  

I am really absolutely scared to get the flu shot because of my severe reaction.  In addition, I am even more hesitant due to an allergic reaction that I had to Bactrim-DS a couple of years ago, so very ambivalent.

As a child, I had a severe reaction to the smallpox vaccine, which caused a hospitalization due to inability to walk.

thanks......

terri

[willowwoman7]

Well then. I'm not getting the flu shot because my neuro says absolutely "NO" on my getting it. But then again, I not only have MS, but lulpus as well. He said he will explain why at my next appt next month. Thank you all for your input. This is the first year I'm not getting it so we'll see what happens. I know last year he was totally against the swine flu vaccine. I have to trust my neuro enough to believe he has my best interests in mind...and I do.

Thanks all.

[Mike_Shuswap]

Thanks ess.  M

[essdipity]

No, Mike, I asked my neuro that exact question two winters ago. He said to go ahead as usual.

ess

[Mike_Shuswap]

Good info. Are there any issues re:DMD's and the flu shot? I thought I read somewhere that your supposed to temporarily stop injecting your DMD around the time you get the flu shot, in my case Redif.

Of course I may have totaly missunderstood what I read.....it happens.

Thanks

Mike

[tonyad]

   I guess in a nut shell, it's always best to get the 'Facts" from all avenues
so that your decision can be an informed one.

    Actually that goes for life in general  :)   knowledge is power
No worries, you will make the right decision that is best for you.

Have a Great week to come!
~Tonya

[Quixotic1]

Anyone's Final decision will always be formed partly by the quality and accuracy of the information they receive.  I just hope that we all strive to give out accurate and approriate info.

Quix

[Quixotic1]

Hives are the little sister of full blown anaphylaxis.  Someone who "just" gets hives to an allergen is at risk for the whole enchilada, including cardiac arrest when  they are exposed to the substance again.  The shot is out for you.

Here is the CDC full info on the 2010-2011 Flu shot.  Please note that some of the vaccine does contain thimerosal.  If this concerns you then you can request a thimerosal-free vaccine.

Q

[summerluvr]

one of the only reason not to get flu vaccine is egg allergy which I have.  Also compromised immune system, so I don't think I'll be getting one this year.  I will ask my dr though, and if she recomends I get one I will get it in the office with benedryl and wait and see that I don't get a serious allergic reaction (my allergy is more of a hives thing.  Last time I had the flu I was in bed for a week!! and then trying to get my strength back for weeks.

[twist330]

Thanks for the info guys.

Will get the jab and grin and bear it!

twist

[sllowe]

Hi Willow-W!  I'm getting one!  And, I'm glad it's all in one this year.

Warning to all: Please be leery of raw food sources touting there is no study proving safety of vaccines. It's like apples writing about oranges (well, you know what I'm saying here).

It's great if they have factual things to say about raw foods. But in this case, what's mentioned above, is simply an untruth and an unreliable source where vaccines are concerned.

Geesh! I hope they don't plan on writing up opinions on DMD treatment for MS.

Thank you Willow-W for asking this question! So many others prob. worry too.
And, thank you Doc Q for reliable information, always.

-Shell

[Lulu54]

Perhaps this information should be made into a health page, since this community revisits the topic each flu season.  Thanks Dr. Quix for all the effort you put into this response. - L

[essdipity]

I think Quix has said it all in her responses. She is an MD with special knowledge of immunology, and she knows whereof she speaks.

I will definitely get a flu shot (as always), to protect myself and those around me who may be particularly susceptible or unable to get the shot for one reason or another.

The fact is, we *don't* always know what's best for ourselves, and that's why we look for reliable information, and why we come here, for that matter. We of course always have the option of taking or leaving advice.

It just makes sense to consider the source of the information, and for me, that means going with good science. The web is open to anyone, but when I want info I use only those sites with no axes to grind, nothing to sell, and with credentials appropriate to the subject matter.

I guess I am a 'go with the odds' sort of person. That certainly has paid off for me, and at least I know I've done my best.

ess