Virus while on IVIG?

Kelly,

It is so funny that I just read your post because about an hour ago my husband and I was talking about Dell not getting sick on IVIG.

He’s had 3 bouts with yeast on his butt and when the neuro. gets back from vacation, I will ask if we can have steriod in the pill form.

He had lots of colds last year but has not had one all summer, knock on wood. He’s had fever a couple of times in the last few months. Fever was one of his main symptoms when we were looking for a dx, he had one every couple of weeks. He had a viral infection with fever about 1-1/2 month ago. It lasted a few days.

I don’t know about everyone else and sickness, just what I know about Dell.

Hope she’s feeling better soon. Love, Lori

Kelly,

Dell was tested Sat. for the staph. His poor penis was so swollen and itchy, we felt so sorry for him. The dr. gave us a yeast and steriod cream and it started working that afternoon.

We go to Jackson, MS (3-1/2 hours away) on Friday for his teeth. Did I tell you ALMOST all of them have to be capped. Can’t remember what I’ve said on the forum.

It has nothing to do with CIDP, something happened while he was inside of me.

Pls. keep him in your prayers.

I don’t know what to tell you about Emily. I don’t know much about getting a virus and IVIG. One day the pulmonologist made the statement that Dell should not be getting sick since he was on IVIG.

I have been reassured that it is near impossible to get a virus with CIDP because we have such overactive immune systems. I always thought this to be strange since my CIDP seems to be the result of an URI back in Feb. of 2002.

I’ve had one viral sickness since being diagnosed. I was not only going thru the fever, chills, and lethargy but also having an allergic reaction to the meds (my tongue and throat swelled almost all the way shut). I began to lose the ability to use my hands and feet and saw myself relaping to what I was before.

Luckily, it seemed to pass within a week’s time and since then, knock on wood, I have not had a cold or viral infection.

I hope both Emily and Dell pull through this with no more than a few long days for the moms:) I’m sure with everything Emily has had to endure that this seems very unfair. I hope she bounces back and is able to enjoy the remainder of the summer.

and I hope Dell heals quickly. I went thru a series of really bad diaper rash with my oldest. Nothing seemed to be working and luckily it was summer. the lil one was given 30 minutes every few hours with no diaper and that seemed to heal it faster than anything the doc gave me. It was no fun though because we knew everytime she pottied in her diaper as she would SCREAM horribly.

We’ll keep both the lil angels in our prayers!

Kelly,

I’m glad you brought up the white cell count thing. I think I will post that question.

Dell always has a white cell count elevation. I think the dr. says his immune system is still working overtime.

Hope everything goes well with the cultures.

Lori

From what I was told, IVIG is not an immune booster, it is an immune suppressant. You don’t want the immune system boosted. Also IVIG can cause flu-like symptoms in many.

Also I was told you can get Viral Meningitis from taking IVIG, which is not the same as the dangerous Bacterial Meningitis.

Symptoms:

fever
runny nose
diarrhea
vomiting
irritability
headaches
sensitivity to light
stiff neck
sometimes a rash

Ask the Drs about this. I do recall a few of our members on the old forum who developed Viral Meningitis from their IVIG.

Kelly,

I haven’t been checking this site, we’ve been busy. Dell had 11 teeth capped 4 hours from home and we had to stay 2 nights in a hotel. Cost alot, but what is money, ha, ha.

I’m glad ya’ll figured out what was wrong with Emily. Our dr. is on his last week of a 3 week vacation out of the country and I can’t wait for his return. Nothing bad is going on, we’re actually at the hospital now getting a treatment but I will feel better when the dr. is in calling distance.

Love, Lori

Perhaps I could add a comment. In GBS/CIDP our bodies do NOT have overactive immune systems (I agree with Brandy). What is happening is that our antibodies to a certain infection, such as campylobacter jejuni, Epstein-Barr virus and one or two others mistakenly react with our myelin sheaths which covers our nerves, thus damaging them.

IVIG is simply swamping our antibodies with other peoples’ to lower the concentration of and hence the effect of the ‘mistaken’ antibodies, there is also some effect on the production of antibodies.

To overcome infection, viral, or bacterial, or fungal we need to produce our own antibodies. In some cases IVIG may protect against Hepatitis A, mumps, measles and to a lesser extent rubella.
There are specific immuno-globulins produced for protection against rabies, Hepatits B and tetanus. IVIG is not a blanket protection against infectious disease.

As one myself, I am well aware that doctors often go for any easy answer if it does not affect treatment or outcomes, to say ‘you have an overactive immune system’ is only part of the answer as I have tried to describe.
I accept that there are many people here with more, or as much knowledge as I have on our specific subjects. This is not something we can expect from our doctors; so full detailed explanations would be unusual. DocDavid

David,

Thanks for posting that explaination. It’s cleared up one more thing about GBS that I found confusing.

Suzanne

I was one of the people that got the viral meningitis from IVIG. The first time I had the Ig in the drs office and so they didn’t get the spinal tap quick enough to say for sure it was meningitis. So the next round of IG they did i nthe hospital so they could do the spinal tap. The good news was, my spinal protein was in the normal range so my treatments are helping the CIDP. The bad news was the white blood cell count was up and so the dr said I had gotten meningitis again. So IG is not an option for me anymore. At any rate, since I had the meningitis, my brain is just not functioning at all. I am constantly confused and can;t do my job anymore. I am getting ready to have to apply for disability between the physical issues of CIDP and the mental issues. Doc says he doesnt think the mental is a leftover problem with the meningitis but I cant help but suspect it is. Does anyone have any thoughts or suggestions?

patricia, i also got menigitis from ivig, i still have some brain fog problems, its been just over a year since it occurred. my short term memory isn’t good still, i do try to get some sudoku puzzles in to help me use my brain more. the problems seem to be getting a little better, but like the rest of my body, if i over do it, my brain feels it also. and no its not in your mind, although i can’t say its all from the menigitis either, i think it might be considered a residual. take care.:)

Cheryl,

Thank you so much. You are the first person to respond that you have gotten meningitis from the IG and to have the brain fog too. The other residual I have from it is that my legs ache, just dull ache, from the knees down so I cant sit for long. Have you had that problem too?

yeap, and still do. i can’t stand for long periods of time, can’t sit for long unless i’m in a recliner with my legs above my waist. can’t sleep very well because laying down hurts the body and numbness hits everywhere. the last 2 weeks i’ve had alot more pain and numbness then i usually have, not from over doing things because i haven’t done much of anything. after i went to my neuro appt thursday morning i’ve been in pain from the muscle testing the infectious disease dr made me do before i got to see the dr i went there to see, he didn’t understand why i couldn’t hold my arms up for long or why i couldn’t keep him from turning my head-not very experienced with gbs and muscle atrophied patients is my guess. scary thing is this dr was my dr last year for my 2nd paralysis event, the one where i got menigitis from the ivig. i don’t even want to think about that—note to self don’t go back to that hospital.:eek:

I’ve had the Aseptic Meningitis four different times and was told it was from not being able to tolorate the brand of IVIg. It got to the point of keeping Dexamethasone by my bed incase it hit, the onset was fast and furious, and would keep me down for days. It’s not a pretty sight. Gammar PIV was the only one I could take and when that stopped working back to the steriods I went. Funny how alot of people would freak out not realizing that I wasn’t going to give the meningitis to them. Anyway, my point was I never considered that my brain fuzzyness could have stemmed from those treatments. This forum has given me a lot of insight and never fails to give me think to think about, fuzzy brain and all.

hi herself, my sister use to live in rosalia(?) and worked at deaconness hospital for over 20 years. she was just telling me she misses her friends out there and her favorite dj-kenney on the oldies station. she now lives in wisconsin. hows things in spokane? she would love to hear how things back there are-anything exciting happening?

why did your dr let you keep trying ivig if that was a known reaction for you-i would not use any brand again if i were you-reactions can cause more problems then the treatment produces good. i was told no matter what don’t use ivig again due to the possibility of a serious problem-as if aseptic menigitis is a piece of cake to go through. take care.

Iagree with Angel. My dr did my first IVIG at his office and I got the meningitis so he wanted to try it one more time in a hospital so we did that and I got it again so he said no more IV and even plasmaexchange would cause problems likely so we ae looking at some other possibly meds or unfortunately steroids. But the risiduals I have from this infection is so bad I am gettin reeady to go ou on short term dis and maybe perm disability with the CIDP and all the other stuff that is wrong, I dont feel I have a choice.

Hi Angel2ndclass, I dated a boy from Rosalia when I was in high school, a long, long time ago. Tell your sister they’re developing along the Northwest section of the Spokane River in the downtown area, putting in Shops and Condos, {the Kendall Yards Project} and that Deaconess is my hospital of choice, they know me well, lol.
I guess I’m a problem child, I have a rough time with alot of the drugs and am very stubborn. I didn’t want to do steriods anymore, I had been of and on them for years. Didn’t want to do them long term anymore, so keep at the IVIg trying to find a brand I could tolerate. Ended up on steriods anyway. It’s hard to find the lesser of the evils when you get nasty side effects from most of the drugs and treatments that are available. A few days of sick can be worth it if there’s some time you feel well after.