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!
"Why did my neuro tell me not to have flu shot?" is a question that you should be asking your neuro.
Last year my PCP highly recommended that I get the regular flu shot and a shot for pneumonia, but she was highly against the H1N1 shot due for several sound reasons, mostly in how the vaccine was produced (one issue surrounded a preservative and I can't recall the other).
If I understand it correctly, this year's flu shot does contain antibodies to protect H1N1.
Please ask your neuro why its not recommended for you and the possible risks of getting the vaccine against getting the flu.
Wow. Ok. That makes sense. I got the swine flu vaccine naturally. Got it last year and was in the hospital with it. He told me prior to that he was recommending none of his MS patients get the swine flu shot. I'm waiting for an answer from him as to why I shouldn't get it. I did have an exacerbation in July so that could be part of it too.
I'm curious as to why your neurologist would say not to get it. That makes no sense because it is not a live vaccine, if you do get the flu the effects of it can be devastating to those of use with MS. A high fever can really create havoc to our bodies. We've had more than one person here have serious repercussions from having the flu last year.
I didn't even ask my neuro because both my PCP and my cardiologist both said I should have it each year. I guess I went with the 2 out of 3 majority rules! LOL
I had my flu shot last week - I'm happy to get it done and out of the way. I was thinking it was perhaps too soon in the season to get the shot but then I heard a bit on doctor radio about it this week.
Those docs said the vaccine is effective for 6-8 months, which will easily take me through the flu season. This year's flu formula contains vaccine for the H1N1, Influenza type A and Influenza type B. It has all the flu types covered pretty well. Their discussion also talked about the mortality rate from the flu in the US.
Going from my memory I think they said something like 36,000 people in the US died last year from influenza and the complications. Normally the flu kills the elderly, young children and the sick but last year was a big exception and ordinary health young people died from the flu. That is pretty scarey, at least to me.
They also had a good discussion about how people how can get the vaccine have a responsibility to get it so they don't become carriers of the disease and pass it on to people who for some reason can't have the vaccine themselves. It only takes one infected person to pass through a public place such as a grocery or a school to have contact with lots of poeple and infect them as well.
I hope everyone who has no health reason to not do so, will get the vaccine this season and protect themselves as well as others. We really are in this together.
Getting a flu shot (dead virus,) not the nasal flu spray (attenuated live virus) should be OK. I guess some Drs. might worry that anything that turns on the immune system might cause a flare. Given that some of us have wonky immune systems, I''d steer clear of live virus vaccinations.
I think that the H1N1 vaccine proved its safety last year. Most of the MS world does recommend flu shots for the very reason that the actual infections are very likely to cause the mother of all relapses.
Throw in the co-morbid conditions of asthma and COPD I believe it would be VERY foolhardy to not be vaccinated. Just be sure you get the shot and NOT the nasal spray which contains live, altered virus.
We have a member of the forum here who was nearly killed by H1N1 last December and was still suffering from the lung damage into last spring. She was on a ventilator in the ICU a day or so into the infection.
Last year there were about 2,100 deaths from influenza (both types) reported to the CDC. Not all deaths get reported. 276 of those deaths were in children under 17 with the highest proportion in the 12-17 year old groups.
People with asthma and COPD have a higher mortality from the flu.
Personally, I don't think your neuro is looking at the "Big Picture". Unless you have a history of Guillain-Barre, I do not see the rationale for withholding the flu shot in a person with MS, much less in a person with MS AND chronic lung disease. If you do not get the vaccine you will need to be prophylaxed with antiviral meds (which have their own possible side effects ) against the flu every time you are exposed. Essentially this means September through about February.
As an MD with a postdoctoral background in Immunology (but apparently not in spelling), I would vote strongly with your GP - and would look for a way to cast multiple votes, lol.
To all the nay-sayers from last years vaccine, there were surprisingly few serious adverse reactions - FAR fewer than even the CDC predicted. Those people spreading panic about it lied about the expected number of people who might be harmed and then got very, very quiet when there were so few.
This is a soapbox topic for me, but I will spare you'all 'cause I'm feeling puny tonight. I recommend the flu shot to the forum and I will be getting it myself. Yes, this year's vaccine does include antigens from H1N1.
My neurologist, cardiologist and primary care Dr all told me to get a flu shot asap.
If I were u I would ask your neurologist why he doesn't want u to have one. That way u will know where he's coming from and make.your.decision about flu shot from there.
I think that you are going to get a bunch of YES YES & YES on this! I see 2 neuro's, a pcp, gyn, cardiologist, gastroenterologist and probably a few that I am forgetting, lol.
Every single one of them has asked have you had your flu shot yet? YES I did on Saturday at the drug store because it was cheaper.
The live virus is a NO NO NO but with all of your health issues I think your neuro either mis-spoke or lost his marbles somewhere that day. Call and see if he found them and ask what the heck the reason for a no was - please share when you find out.
P.S. DH has always refused to get a flu shot and this year when he got dx with diabetes it was one of the first things they told him at diabetes ed - you need to get a flu shot! AMEN - he should have been getting them to protect me all this time for heavens sake.
Wow!!! more confused than ever. It does bother me that the flu shot contains the vaccine for H1N1. We had 2 nurses wind up in the hospital AFTER getting the vaccine. I'll see what his reasons for not getting the shot is. I don't know why they had to add H1N1 to it. I've never had a problem with the regular flu shot, but was hospitalized with swine flu last year. So...that being said, I still don't know what to do. I'm scheduled to get the shot on Monday, so I've got a little bit of time to think about it yet. Thanks everyone.
Thanks for raising the subject as this has been on my mind. (Wow what a response!)
Last year I Had both flu shot and H1N1 shot the later made me really quite ill and although my neurological symptoms had started before this, it really put them into fast forward, never to rewind! huh!
This year I had decided I would have the flu jab but not H1N1, so the science guys decided to confuse me by mixing the 2 together. (I also suffer from asthma)
Firstly does anyone know if this mixed shot is happening in the UK?
Also having spoken to my consultant last week and him warned me over catching infections or running a temperature, what is a girl to do?
It's not uncommon to get a fever and achiness with any vaccine. this is because the immune system is being stimulated to produce antibodies against the viral proteins in the shot. The body produces interferons in good measure. We all know that the interferons can cause fluish reactions, but these rarely last more than a day or two. The flu, on the other hand can be a full ten days of high fevers and flat on your back with weeks to get back to normal.
I get this reaction to every tetanus booster. Would I rather have tetanus? No, I can put up with fever and the devil of a headache after each shot, thank you.
I agree. the shot reactions are no fun and they can trigger a relapse. But this is how you compare the two events:
The shot injects a finite amount of viral protein in you ONE TIME. You react to it and there is no more stimulation. The relapses are generally shorter and milder. the shot stimulates the immune system, but allows it to function normally. The fever only lasts usually a day or less and the fever is usually lower. If you know you tend to react to shots, it is best to hydrate well, and premedicate with Ibuprofen or naproxin (Motrin/Advil or Aleve) and you will shorten the reaction time and keep your temp from triggering a pseudo-relapse.
The flu virus enters your body and immediately begins replicating and making millions of copies of virus each of which replicates and makes billions more virus and this goes on for more than a week. So the immune system is inundated with constant HUGE stimulation every hour for days on end. The influenza virus actually does weaken the immune system and make you susceptible to other viruses.
The fevers in the actual flu infection can reach 105 in an adult and may last for many days. This extended high temp will cause additional symptoms for the entire duration of the infection. It is hard to completely treat the fever of the flu, because it is driven so high that the fever breaks through the meds. You tend to dehydrate during the flu and taking so much med to lower the fever isn't great either as they all affect the liver - as does the flu virus. The relapses that the infection causes are almost always MUCH more severe than any reaction to the shot.
Then there is the potential for the H1N1 to suddenly kill young adults and adolescents. When you get the flu you can expose those you love and people who are weakened or who have respiratory disease or small infants. You may not get severely ill, but they can. And you are contagious before the symptoms start.
So the difference is a limited amount of viral protein to react to versus days of unlimited viral proteins to continue to overstimulate the immune system and chance severe illness or infecting others.
Does that help you put last year's reaction into perspective?
I think your UK flu shot is the same as our southern hemisphere one was for our winter. It contains swine flu plus two others:
* ›› General Information
* Epidemiological Data
* Contact Details
Influenza Vaccine Composition
Influenza vaccines are administered each year as new strains are evolving constantly. To allow time for vaccine manufacture, the decision about which strains to include is made about six months in advance of the start of the influenza season. The World Health Organization (WHO) makes recommendations twice a year for the northern hemisphere (usually February/March), and southern hemisphere (usually September) vaccine composition. These recommendations are based on the strains circulating at the time, as reported by countries across the globe. The WHO recommendations for the current and previous vaccines are listed on this page. For more information, please visit the WHO website.
2010/11 Influenza Season - Northern Hemisphere
It is recommended that the following viruses be used for influenza vaccines in the 2010-2011 influenza season (northern hemisphere):
— an an A/California/7/2009 (H1N1)-like virus;
— an an A/Perth/16/2009 (H3N2)-like virus;*
— a B/Brisbane/60/2008-like virus.
* A/Wisconsin/15/2009 is an A/Perth/16/2009 (H3N2)-like virus and is a 2010 southern hemisphere vaccine virus.
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.
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.
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.
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.
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.
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 :)
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.
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.
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.
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.
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!!
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.
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!
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