Aa
MS and vacinations
I have heard disturbing stories about vaccines (like the flu vaccine) causing increased problems in people with MS. The basis of these theories is that vaccines stimulate the immune system. When you active the immune system of an MS patient, their haywire system attacks the patient's body. I know getting the flu also has its risks. Doctors I have spoken with are noncommittal. Any thoughts?
Suzanne
Suzanne
WAF,
I read your profile and wanted to send a message just to you but I could not figure out how. I suffered from extreme fatigue for a least the ten years between ' 94 and 2004. What worked for me may not work for others. I needed to lie down every 1 1/2 hours for about 20 minutes. Getting ready for the day required 3 rest breaks. I went to an MD who also considered alternative medicine of value. The first thing he did was a blood test to find my nutritional deficiencies. Among them was vitamin D. I now take that 3 X day. I stopped all but 2 meds; take vitamins and supplements; and eat a diet full of fruits, vegetables, fish + poultry. I now can go 12 to 13 hours without taking a break.
The medicines that were supposed to be helping me were making me more fatigued. I kept a journal of what I did daily to try to determine what I was doing to make some days "good" and others "bad". What I did on the "good" days is forget to take my medicine. I know this would not work for everyone but what I am suggesting is that you be observant. Maybe there are more natural ways to handle the problem. Just a thought.
Now I don't want everyone to stop all their meds. I'm not suggesting that. Just keep your eyes open for the side effects.
Suzanne
I read your profile and wanted to send a message just to you but I could not figure out how. I suffered from extreme fatigue for a least the ten years between ' 94 and 2004. What worked for me may not work for others. I needed to lie down every 1 1/2 hours for about 20 minutes. Getting ready for the day required 3 rest breaks. I went to an MD who also considered alternative medicine of value. The first thing he did was a blood test to find my nutritional deficiencies. Among them was vitamin D. I now take that 3 X day. I stopped all but 2 meds; take vitamins and supplements; and eat a diet full of fruits, vegetables, fish + poultry. I now can go 12 to 13 hours without taking a break.
The medicines that were supposed to be helping me were making me more fatigued. I kept a journal of what I did daily to try to determine what I was doing to make some days "good" and others "bad". What I did on the "good" days is forget to take my medicine. I know this would not work for everyone but what I am suggesting is that you be observant. Maybe there are more natural ways to handle the problem. Just a thought.
Now I don't want everyone to stop all their meds. I'm not suggesting that. Just keep your eyes open for the side effects.
Suzanne
Thanks for sharing that reaction with me. I'm glad you got help right away!!
I tried amantadine, but got a gassy feeling in my chest, so I stopped taking it. I'm back to Provigil - learning ways to take it more often (such as don't exercise much on the days I take it and be sure to nap mid-day then get 10 hours sleep that night).
I always have a much greater energy deficit after taking Provigil - but to me it's worth it for the energy it gives me for the first 6-8 hours after taking it. I feel normal again!!
We can all have such differing reactions to meds and interventions!!
WAF
I tried amantadine, but got a gassy feeling in my chest, so I stopped taking it. I'm back to Provigil - learning ways to take it more often (such as don't exercise much on the days I take it and be sure to nap mid-day then get 10 hours sleep that night).
I always have a much greater energy deficit after taking Provigil - but to me it's worth it for the energy it gives me for the first 6-8 hours after taking it. I feel normal again!!
We can all have such differing reactions to meds and interventions!!
WAF
WAF,
You mentioned the one medicine I definitely cannot take - Amantadine. I have had a Curare reaction to this several times before we found the cause of the reaction. One time involved a very scary ambulance ride to the hospital. This is a documented reaction in the medical literature and I was textbook. I had complete paralysis from the waist down and partial paralysis from the the arm to the waist. This paralysis lasted 10 to 12 hours. My respirations were shallow and in the 40 and pulse in the 140's. A temperature of 102.9 developed several hours into the reaction. Because I had put my meds in a weekly container, each day I would retake the med and in about 2 hours the reaction would reaccurr. This went on for several days before the cause and effect were identified. I have a terrible time with many meds. Something to do with an absent or not fully developed metabolic pathway.
Oh well,
Suzanne
You mentioned the one medicine I definitely cannot take - Amantadine. I have had a Curare reaction to this several times before we found the cause of the reaction. One time involved a very scary ambulance ride to the hospital. This is a documented reaction in the medical literature and I was textbook. I had complete paralysis from the waist down and partial paralysis from the the arm to the waist. This paralysis lasted 10 to 12 hours. My respirations were shallow and in the 40 and pulse in the 140's. A temperature of 102.9 developed several hours into the reaction. Because I had put my meds in a weekly container, each day I would retake the med and in about 2 hours the reaction would reaccurr. This went on for several days before the cause and effect were identified. I have a terrible time with many meds. Something to do with an absent or not fully developed metabolic pathway.
Oh well,
Suzanne
Last October I contacted my neuro on this exact point. I was particularly interested in learning whether doing an Avonex shot and getting the flu vaccine the next day was a good idea. He said no probs.
We've had this discussion a few times, and the consensus always is that flu vaccines are fine, as long as they don't contain live virus.
ess
We've had this discussion a few times, and the consensus always is that flu vaccines are fine, as long as they don't contain live virus.
ess
I heard what you heard about vaccines aggravating MS from an MS neurologist who spoke at an MS dinner, telling the group to avoid vaccinations in general unless they are specifically indicated due to a personal medical condition that absolutely requires them because of just what you have heard - that they can cause MS exacerbations, new attacks. It makes sense because they do stimulate the immune system. You have to consider the risk/benefit ratio.
Oddly enough, even though I never get flu shots, I already appear to have a highly active immune system because I'm virtually never sick. Haven't had a flu shot in probably over 40 years and have not had the flu either (you may not even get the flu if you don't get the shot). However, I remember becoming ill from a flu shot many years ago with a temp and flu-like symptoms. That's when I decided to stopping getting flu shots. Not to mention that a given flu shot does not protect against all flu types.
If you're really concerned about the flu, you could take amantadine which many MSers already take for energy - it was originally developed to protect against flu.
WAF
Oddly enough, even though I never get flu shots, I already appear to have a highly active immune system because I'm virtually never sick. Haven't had a flu shot in probably over 40 years and have not had the flu either (you may not even get the flu if you don't get the shot). However, I remember becoming ill from a flu shot many years ago with a temp and flu-like symptoms. That's when I decided to stopping getting flu shots. Not to mention that a given flu shot does not protect against all flu types.
If you're really concerned about the flu, you could take amantadine which many MSers already take for energy - it was originally developed to protect against flu.
WAF
I think the flu vaccine topic will definitely be on everyone's radar for the upcoming season - N1H1 (swine) flu has been quite the reminder about how serious the influenza can get.
Good luck with the rest of your research,
Lu
Good luck with the rest of your research,
Lu
Lulu,
I'm persuaded. I wasn't on this web site last fall but will now check the archives.
Thanks,
Suzanne
I'm persuaded. I wasn't on this web site last fall but will now check the archives.
Thanks,
Suzanne
Heather,
Thank you so much for your input. I found it helpful. I like the way you did not approach the topic with strong, off-the-wall arguements. I like your way of thinking and rational approach.
Suzanne
Thank you so much for your input. I found it helpful. I like the way you did not approach the topic with strong, off-the-wall arguements. I like your way of thinking and rational approach.
Suzanne
Hi Suzanne,
Getting the Flu (or any other illness) will definitely activate the immune response in our systems and possibly lead to serious exacerbations or flares. We kicked the flu vaccine topic around last fall and came to the concensus that skipping the vaccine is NOT AN OPTION for those of us with MS.
The Vaccine that is given is not a live virus, and does not activate the system.
The flu mist is live virus, and that is a totally different thing to be avoided.
What doctors are you speaking with about the vaccine?
Lulu
Getting the Flu (or any other illness) will definitely activate the immune response in our systems and possibly lead to serious exacerbations or flares. We kicked the flu vaccine topic around last fall and came to the concensus that skipping the vaccine is NOT AN OPTION for those of us with MS.
The Vaccine that is given is not a live virus, and does not activate the system.
The flu mist is live virus, and that is a totally different thing to be avoided.
What doctors are you speaking with about the vaccine?
Lulu
I have been diagnosed with MS for over a decade. I take a flu shot every year and even have had other regular vaccines. I have noticed no difference in my MS. Now getting the flu can create much more havoc in your body than a flu vaccine. Please trust me on this.
It still is always a personal choice. I know that there are a majority of members that DO get their flu vaccine every year.
So that's my two cents, worth.
Good Wishes,
Heather
It still is always a personal choice. I know that there are a majority of members that DO get their flu vaccine every year.
So that's my two cents, worth.
Good Wishes,
Heather
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
