Hello! Not-quite-new member with flu question
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June 15, 2009 at 8:15 pm
Hello, everyone.
My name is Beth. I’m 41, a happily married working mother of 2, and was diagnosed with CIDP (Lewis-Sumner variant) in September 2008. Although I now suspect that I had mild symptoms for a number of years, the scare that started the hunt for a diagnosis began with a bout of the flu in March 2007. Over a period of about 48 hours, my right arm and leg first “fell asleep,” then stopped working or registering sensation entirely. It was as if I had had a stroke and it was terrifying. Fortunately, for no known reason, my muscle and nerve function came back to mostly full stength over a number of weeks.
The neuros at the hospital decided I had experienced a migraine that had stopped muscle function for an unusually long period of time due to my weakened, dehydrated state (from the flu) and put me on Topamax. The Topamax side effects of numbness and tingling masked the progression of the CIDP in my hands and feet until I (who had never had a headache and therefore did not believe the migraine theory) asked to go off the Topamax to see if I truly had migraines. I didn’t have them and the numbness, tingling, and weakness persisted and worsened.
At the lowest point, I couldn’t button buttons or tie shoelaces, I walked with a decided limp, and I was getting steadily worse. My husband wasn’t satisfied with the local neuro’s diagnosis of idiopathic neuropathy and encouraged me to find an expert. I saw Dr. Louis Weimer in August (at Columbia Presbyterian in NYC) and had a diagnosis in September. I started IVIg right away and had immediate positive results. These days, I mostly have some sensation loss in my right hand and foot, fatigue, and — when I overdue — cramping in my legs and feet. I’m very fortunate and, so long as I stay very well hydrated, the only side effect of the treatment seems to be heavy fatigue and some muscle spasms/restlessness of the legs. My schedule is 3 days every third week.
I’ve been lurking on the forum for most of the last year but have been hesitant to post, mostly because I am aware of how truly fortunate I am. Many of you bravely suffer so much more from this affliction than I do — I’m ashamed of myself when I even think of complaining.
BUt I’ve chosen to write now because, once again, I have the flu. The quick culture my GP did was positive for inluenza A, but I don’t know yet if its the seasonal flu or the H1N1 variant.
And I’m scared.
So far, I am not following the pattern of my previous flu bout. But I keep rubbing my fingers together and brushing my foot along the mattress to check the level of sensation. The tingling has definitely increased and I’ve noticed a slight decrease in sensitivity. But I can still use my hand and foot, so I’m miles ahead of where I was last time. (Oddly, I got the first symptoms on a Friday both times, so it’s easy to compare. I was admitted to the hospital on Sunday the first time; that I’m still at home is a very good sign, I know.)
BTW, I had the flu shot this year — I suggested to my neuro that the flu was more of a risk for me than the vaccine and he agreed — but I’d had it before the 2007 bout of the flu, too.
Anyhow, I just wanted to know if anyone else whose CIDP was triggered by the flu had anything (positive, I hope!) to share about subsequent bouts of the flu.
Thanks for “listening” and my warm wishes for peace and healing to all.
Beth
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June 15, 2009 at 9:43 pm
Beth,
Welcome to our group. I don’t have the answers you are looking for about the flu.
Hopefully you start to feel well soon.
When is your next round of IVIG?
Rhonda
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June 16, 2009 at 8:48 am
In both instances you mentioned that you received a flu shot prior to coming down with the flu… Perhaps the shot itself is what’s causing you to become ill?
My neuro has advised me [U]NOT[/U] to get flu shots because we’re actively suppressing my immune system as a means of treating my CIDP.
That being said, my understanding has always been that inoculations only utilize inert viruses in order to prompt the recipients immune system to create antibodies against the “invading” virus.
Hope you’re felling better soon!
Kevin
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June 16, 2009 at 10:02 am
Hi!
Thanks for the welcome! I just had an IVIg treatment last week, ending on Wednesday. Maybe that is why this has been such a comparitively mild bout of flu. My neuro has not yet called back, so my next treatment is a few weeks away.
As for the flu shot, I’ve had the vaccine every year for the last 6 years, always in the Fall. There was no appreciable health issue related to the shots either before or after my diagnosis. Both times I’ve had the flu, it has been in the Spring. My neuro and I went back and forth about whether I should have the flu vaccine, but as I have kids in the public schools, it seemed the wiser course to risk a reaction to the vaccine (a weakened strain) than to risk getting the flu with no protection at all. I’m hoping that the gamble paid off.
Here’s how I’m talking myself into calmness and sense:
The theory my doctors/nurses appear to be working on is that we want to stop my body from producing the confused antibodies that attack me, so we fill up the tank with neutral antibodies (IVIg). Like the indicator in a car that shows whether the gas tank is empty or full but doesn’t know if the gas is regular or high test, the mechanism in the body that checks for the presence of antibodies only knows how much, not what kind of antibodies you have. So, as long as you’ve got enough of them, there’s no need to signal for production of more.
Following that theory, a mild strain of the flu (or flu vaccine) that occurs right after an IVIg treatment is not likely to trigger the production of those confused antibodies, because the tank is already full.
Right?
Thanks!
Beth
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June 16, 2009 at 2:33 pm
Beth
Your flu like symptoms are a very common reaction after having IVIG!!!
You might not have the flu but are ill feeling becasue of the IVIG.
I get those feelings after my IVIG if I don’t take Tylonol and benadryl.
I take them during the infusions and the day after.
Something to think about.:confused:
Rhonda
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June 17, 2009 at 3:49 am
Ditto what Rhonda said – I get flu like symptoms from IVIg treatment and sometimes it’s really hard to tell the difference. I’ve also have the flu on and off for the last month – can’t seem to shake it off… Initially we think my CIDP was set off by a combination of flu shot, bronchitis and surgery – however subsequent bouts with the flu have not resulted in a full blown CIDP attack. I have SOME slippage back but not a full blown relapse. However every single time I get IVIg treatment I get ‘flu-like’ symptoms even with benedryl and tylenol. Sometimes the only way I can tell the difference is to count the days after treatment – the flu like symptoms start anywhere from 1 to 3 days after treatment. And it’s the whole cocktail of symptoms too – shivers, coughing, sneezing, achy muscles and joints, nausea etc. You feel like it’s the flu – everyone will be avoiding you like it’s the flu but it’s not, its just a reaction to the IVIg. And I get different symptoms too – possibly batch dependent – sometimes I’m more sneezy, other times more shivery and achy. And I almost always have a headache that ranges from mild sinus headache to “somebody stuck an ice pick in my eyeball.”
In addition, blood tests taken after a recent IVIg dose have been skewed for me – they show things that aren’t really produced by my body – antibodies donated from someone else and so on. So having had a flu test after your IVIg does not necessarily mean that you have the flu – only that you have antibodies to the flu which could have come from someone else via your IVIg.
Finally – the H1N1 flu virus is not that big of a deal – my husband had it, we all teased him about having the ‘pig bug’ and likely that’s what has been lingering in me for a month, I just refuse to get tested (and thus in the paper). It’s not that big of a deal – it’s just the flu and its no worse than any other kind of flu. My brother’s entire family had it and his wife is a doctor – it’s nothing to panic about even when you have CIDP. As I said I’ve had it for a month now and while my CIDP has been acting up more it’s not a full blown relapse. Between my body and the IVIG we’re keeping things in check. 🙂 And those of us who do get IVIg are still very lucky to have that protection regardless of the side effects. (achoo!) :p
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June 17, 2009 at 9:57 am
Hi there.
First off, you might need to speak with your dr about getting the flu shot while you are on IVIG. Immunizations should not be given within 3-6 months of receiving IVIG because the IVIG basically cancels the immunization out.
Also, if you have CIDP you should not EVER get the flu shot. It’s thought that you should not get any immunization again. Any time you get an immunization it puts your immune system to work. Any time your immune system goes to work, it creates more bad antibodies, which attack your nerves – which is what you do not want to happen.
Once your flu symptoms go away I would call your neuro & ask for some IVIG – just to be sure. We’ve noticed with our daughter that if she gets sick she’ll need a small boost of IVIG after wards.
Can you ask to be put on one of the anti-viral meds? That may help you recover quicker & help to keep you out of a relapse.
Kelly
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June 20, 2009 at 6:46 am
Hi Beth,
I too feel very lucky, I was diagnosed with CIDP in 1996 and after treatments with pred. IVIG and PPE am able to function. I still live everyday with numbness in my feet/but got all feeling back in my hands so I can’t complain compared to others on the forum. My neuro has also told me NO FLU SHOT..I have never had a flu shot. I do know when my body is fighting a bug my numbness in my feet will get worse before I even feel sick, i quess my immune system is being hyper, luckly it is usually just a cold or respitory virus and runs it coarse and my numbness is better/never gone but I don’t have pain associated with it and I usually only get sick maybe once a year. So now I know the feeling and usually try to get as much sleep as possible when I feel like something is coming.
hope this helps
lynette -
June 26, 2009 at 10:35 am
Hello, all!
I’m feeling MUCH better now! I’m back at work and have even started working out again. I just wanted to thank you for your warm wishes and to respond to some of your posts.
First, to those who suggested that I might be experiencing flu-like symptoms as a result of the IVIg treatments: I had a positive flu test, so I’m pretty sure it wasn’t the IVIg. Also, they symptoms started several days after the treatment ended. My nurse has said that if I were going to get those symptoms they would generally occur right away — is that not the case for you?
For those who said “NO flu shot” or “NO vaccines at all,” I would really like to see scientifically valid evidentiary (not anecdotal or theoretical) information that supports this viewpoint. My neuro and I both felt that my lifestyle puts me at high risk of exposure to the flu and that it was safer to GET the flu shot, which might rouse a WEAK response in my immune system, than to risk the full-blown flu, which would be likely to rouse a STRONG immune response. Now, one case does not prove anything, but I had no reaction to the flu shot (I never have) and only a very mild case of the flu, possibly because I was protected by the vaccine. MY CIDP symptoms became slightly more noticable while I was sick, but not so much (per my doctor) to warrant a change in my IVIg treatment schedule. In my book, the calculated risk I took paid off.
Perhaps a blanket NO to vaccines is the best choice for some, but I made the choice to take the flu vaccine in cooperation with my doctor based on my medical history and risk factors and, until there is [I]scientific evidence [/I]to prove that it is the wrong thing to do, I’ll evaluate whether to take other immunizations based on the risks involved, too.
Hope that you are all doing well!
B.
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June 26, 2009 at 10:55 am
If its really important to see scientific proof you would need to talk with the vaccine makers. They have all the scientific answers you are looking for due to the fact they have to by law and fda rules, have this available to consumers. If you ask for it you will get it, just remember its in scientific langauge. Its also in print in every box of every vial of vaccine, by law. On these sheets, which is printed by the manufacturer, it does state the gbs information.
Still, it is ultimately a decision left up to you, its your body.
I use to get flu, pneumonia and all vaccines related to my hospital job, prior to my neuropathy problems. I have investigated the scientific aspects, read all the enclosures with the vaccines, and still would weigh the pros and cons prior to receiving any type of vaccine, its just the responsible thing to do for my own body. Its another of those individual things about this syndrome, whats right for one may not be right for another. -
June 27, 2009 at 2:21 am
[QUOTE=bbrooks]
My nurse has said that if I were going to get those symptoms they would generally occur right away — is that not the case for you?
B.[/QUOTE]
No, my flu-like symptoms can start anywhere from 1 hour after starting to 2-3 days afterwards. Its not as bad now that I get treatment once a week but I can count on feeling like I have the flu every week for a day or so.
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June 27, 2009 at 10:37 pm
At the GBS-CIDP Symposium, there was quite a bit of discussion about flu shots and other immunizations–mostly flu shots. There were at least 10 neurologists that are very involved in GBS/CIDP there and many stated opinions. Almost everyone of these experts recommended the flu vaccine if you were in a higher risk group–including immunosuppression, unless you got GBS within 4-6 weeks after a flu vaccine and the feeling was that the GBS was at least possibly associated with the onset of the GBS. Also, the majority consensus seemed to be to not try to avoid giving any immunization within the first year after GBS/onset of CIDP. They specifically said that they did not recommend withholding the flu shot in anyone who did not get GBS/CIDP after a flu shot. This is also the recommendation of the CDC–that just anyone with GBS should not avoid the flu shot–only those with GBS after a previous flu shot. They also said that this was an area of considerable controversy and that most patients refuse the flu shot after having GBS –mainly as a reaction to incomplete understanding and fear although an understandable fear. Dr Parry was the one that lead the discussion and that workshop. He said that influenza is not one organism, but changes a lot each year and that the strongest scientific thinking about why it is NOT that great a risk another time to get a flu vaccine is that the vaccine is specific to (guessed) changes in the flu and different every year. Also that there are two important varients of influenza–A and B and that even if an individual immune reactivity were to do set to react to the A type, one should be “safe” from vaccines and infections with the B type. Of course, this last year was strange in that we saw influenze A and B types in addition to all the hoopla about HINI (swine flu).
Vaccinations of other diseases are different that that for the flu in that the wish for the flu is to protect you for THAT year and vaccination for measles, for example, is to protect you for life. The consensus is not to give a measles vaccine, for example, within 3 months of IVIG because there will be other people’s antibody to this same vaccine/illness in the immunoglobulin and it will not provide prolonged protection (since the immune response is attenuated by the presence of mature antibody). My understanding is that the vaccine will not hurt people with a normal immune system (definition subject to controversy) but if not advised because if may not help and may lead to a false sense of protection. My understanding is also that measles is a live vaccine and, thus, could possibly cause illness in some severely immunosuppressed people that could be serious. (severely immunocompromised is like the “bubble boy” with severe combined immunodeficiency–not just people on immunosuppression for autoimmune diseases–although there are ranges of immunosuppression). Thus, after immunoglulin, no benefit–risks in some groups–don’t do. Flu is different, from my understanding in that the vaccination is only supposed to work for a year, is a dead virus when given as a shot (safer for people with immune issues), so that there is a less risk, greater chance of benefit (since immunoglobulin in the pooled source is expected to be to flus of years past not the present one so one probably will get some immune protection, just maybe not as strong a one).
I do not say this to say that people should get the flu shot–but to state some of the facts of the case. I thought about all this and still declined to get the flu shots both years now after getting GBS. Each person needs to decide for themselves with their doctors help based on risks and benefits of the shots in their own situation. One of the tiny good things of the swine flu hoopla is that it. hopefully made it clearer that no flu is completely safe–tens of thousands of people die each year of flu and that there is a tremendous amount that medicine still does not know about influenza as illness or as vaccination.
WithHope for a cure of these diseases -
June 27, 2009 at 10:46 pm
I got tired of typing with the last, but had a couple of other specific comments for Beth.
there is something called a migraine equivalent that can lead to transient paralysis without a headache. It is called a migraine equivalent, because there is no evidence of a stroke/TIA and it is presumed that the cause of the damage is due to spastisity in the blood vessels in a way similar to happens with migraines.
I started with arm symptoms several months before all the rest of this stuff too–not paralysis, but lots of pain and limitation in ability to move. The orthopedic surgeon did not think it was a rotator cuff issue, because the pain started in above the elbow and the limitations were not consistent with this. One of the discussions since then is that there can be a serious inflammation of the brachial plexus–the collection of nerves that supply the arm. this can cause symptoms just in the arm. Because it is an autoimmune/inflammatory neuropathy, it can also generalize to then cause symptoms in other nerves. If you had arm or shoulder pain, it might be worth asking your neurologist about this.
WithHope for a cure of these diseases
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