I had a reaction that was classified as “anaphylactic”. We now use an immune globulin that is lactose free (gammunex), pre-medicate and run at a max of 50 mml per hour. No problems whatsoever and as an added benefit no post infusion headaches or just feeling dumpy.

I have been on IVIG for 15 years. I am pre-medicated so when finished I feel no after-effects. I don’t just sit still, I walk around the hospital pushing my pump, read, watch tv and nap.

For me, getting IVIG is just a day doing that instead of something else and poses no real problem. I hope it is the same for you and that above all it works for you.

CIDP SURVEY

Today’s date 10/21/09
Gender m
DOB 1929

CURRENT CONDITION
Current age 80
Current level of recovery: full? Partial? Partial I guess.
Do you use any aids for walking or other physical activities? no
Do you receive maintenance physical therapy? no
Can you usually walk without pain? yes
Can you work full time, part-time, or are you on disability? retired
What meds do you take for CIDP? IVIG
What other meds do you take currently? Warfarin, atenalol, diovan, zocor
What symptoms, if any, do you still have. Please rate each on a 1-10 scale a little weakness with 10 being the most severe or painful. weakness 1
Do you have any other chronic conditions? Please list, with age or date of onset. Specifically have you been diagnosed with: Hypertension, cholesterol
Cancer? no
Lupus? no
Thyroid disorder? no
HISTORY
Age of onset of CIDP 60 – 64
Where did you live at the onset of the CIDP? Texas – Colorado
Prior to CIDP onset, were you:
Ill? ?????
Beginning a new medication? no
Had you gotten a vaccination? no
Any new environmental stresses, such as mold or pesticides? no
Were there stressful conditions in your life? If so, please describe (ie, wedding, job loss, etc)
Original diagnosis—were you diagnosed with GB? CIDP? Or something else? CIDP
What sort of doctor did the original diagnosis? Neuro
How was the diagnosis made? Did you have a:
spinal tap yes
MRI yes
nerve biopsy no
muscle biopsy no
bone marrow biopsy no

What was your original treatment? PE AND CIDP
Any other treatments other than your current one? tried imuran
How long was your recovery time? Like nearly all CIDP no recovery just held at bay by IVIG
Did you receive physical therapy? If so, did it help? yes, no
How many times have you relapsed? Please list date or age and severity of 67 8 70 an 8 77 a great big 10 in the icu.relapse on a 1-10 scale.

INSURANCE
Do you currently have private insurance or Medicare/Medicaid? yes
What did you have at the time of onset? same
Have you had issues getting any treatments covered? no
Have you had to refuse any treatment because it was not covered by insurance? no

FAMILY HISTORY
Anyone in your family have neurological illnesses? no
Autoimmune illness? no
Cancer? no

ILLNESSES AFTER CIDP DIAGNOSIS AND TREATMENT
What if any major or chronic illnesses have you been diagnosed with subsequent to your CIDP diagnosis? Please note date of onset, level of severity, and if you think this may be a side effect of a drug you take for CIDP. DVT 3 times and I take warfarin for it and I have always been suspicious that veins were irritated by IVIG but then part of the name of this stuff is “inflammatory”

ESSAY QUESTIONS (optional)
How does CIDP impact your daily life? Balance and slow down but I don’t know if it is CIDP or old age as I have never had either before.

How satisfied are you with your maintenance meds? greatly

35 years in the military and I have heard it all. But this is not the place for vulgarity or accusations.

This is a place for support, comfort and strength, and information. Let us keep it that way.

Hang tight Alice. There are better days to be. All will be well and all will be well.

Any of you go to the GBS/CIDP foundation bi-annual medical conferences? If so please check my memory as it is not the world’s best. I have been to 3 of the conferences and the subject of vaccination has been raised with the “experts” each time. As I remember it we were told two basic things with no disagreement among the neuros there who specialized in cidp: A dead vaccine is ok but don’t take a live one and that there was no evidence connecting cidp to the flu shot. Any how, that is my memory. Any of you remember it differently?

Thanks for the info on ig effect on vaccinations. It seems to be a real discussion point in the med community. Seems to be a general agreement that ivig “kills” vaccines with the exception of tetanus and influenza. I may have wasted my time but on the other hand I may not have. Any how, I have found no medical professional saying that “dead” vaccines are of any danger to people with cidp.

SO each of us is entitled to our own perspective of the Medical Profession and the Government. AND we are each the most concerned person in the world about our own health. Let each of us do what we believe is best for our own health. For me, and not for anyone else, I remember my neuro 15 years ago who was light years ahead of the average neuro on knowledge of cidp, who was an army doctor so he got no cut on vaccines, telling me that I already had cidp so I wasn’t likely to get it from a flu shot. For just me and not you or any one else I got the shot and I will continue to do so.

Just did my monthly CIDP IVIG and got my annual flu shot today. Been doing both for 15 years. My Neuro said “The flu shot may cause a flare-up of CIDP but FLU may kill you.”

I have never had any reaction to the shot.

Note, my reading says that in 1976 a bad batch of flu vaccine caused some GBS but that now the possibililities are a about 1 or 2 in a million. Since that time the shot has not been clearly linked to GBS.

I find nothing linking CIDP to the shot. My info comes from the CDC department of Health and Human Services. [url]WWW.cdc.gov/flu[/url]

In any event I personally think the go or no go decision on the shot should be made in consultation with a Neuro with knowledge of CIDP.

Hey, it is your body do what you think is best.

Hooray And Whoopee!

I was diagnosed in 1994. I have been in a wheel chair only one time when I had a big time relapse that basically paralysed me. I walk and hike. I get IVIG every 4 weeks. If I fail to get the IVIG I go down hill extremely fast. If I did not get IVIG at all I am certain that I would be in a wheel chair. I am one very lucky guy.