AnonymousAugust 8, 2011 at 9:40 am
I was treated for MS erroneously for four years. Turns out that I have had a severe b12 deficiency and CIDP along with a tumor in the mid brain area of my brain stem.
The damage to my feet legs and hands had gotten bad quickly. After a lumbar punch produced high protien I was given a five day regime of IVIG, once a day in the hosp for five days.
I read all the comments I could so I expected a headache and perhaps flu like discomfort. However, my doc was on vaca and as most ppl with flu like symptoms do not have a fever, and they were using an ear thermometer, I was showing no temp and getting the tsk tsp, pat on the head until my husband demanded an oral thermometer and it was 102.Y
When the doc came back the ear thermometers were pulled. I most likely had aseptic meningitis. I understandy that while not desirable, it is not dangerous and clears on it’s on. But, I will most likely get it every time I get a treatment
Can someone tell me, I can step up on a step now without using my arms to pull me and my toes feel a bit freer, but that seems to be all. It has been tover a week. Am I expecting too much? Oh, and I cannot eat, I have no
appetite and feel sick. I have had diarrhea almost constantly. Anyone have this? The head aches faded but when I had them they were shooting through my head. Sorry for the bad spelling. Between the vision loss, another issue, and iPads auto spell, I am S o l.
AnonymousAugust 8, 2011 at 1:16 pm
I’m sorry you had such a terrible experience with IVIG. It should not have happened.
There are a few things you can do to help with side effects.
1) HYDRATE, HYDRATE, HYDRATE! Make sure you are drinking water 24 hours before your infusion & drink it until 24 hours post infusion.
2) Pre-medication! Most people take Benadryl and either Tylenol or Motrin. Some people need to add in a very small dose of steroids.
3) Ask to be given the IVIG at a slower rate. Make sure it is started off at a low rate & then slowly ramped up to the highest speed. My daughter gets 20 grams & her infusion takes about 2 hours 45 minutes. She starts off at 13 (I think) and the max is 100.
4) Make sure you are receiving the same brand for every single infusion. Some hospitals will mix & match. Meaning one day you might get Gammaguard & the next Gamunex.
5) If you are getting infusions at a hospital ask to only have nurses who are experienced with IVIG. Just because a nurse works at the hospital doesn’t mean they know everything about every medication.
6) If you ever get another loading dose you can ask to get the IVIG every other day. I read a study a few years ago suggesting women should get a 5 day loading dose every other day as opposed to every day. I don’t remember why it was suggested though. (Maybe you could use Google to find it).
Something I tell everyone who is knew to CIDP is to keep a binder full of your lab results, copies of rx’s, dr’s notes, IVIG batch info, etc. It also helps to keep a daily journal of how you are feeling. It’s nice to look back a year later & realize how much you’ve improved.
My daughter went from barely being able to walk, not able to open & close her hands, & not being able to lift her arms to feed herself, to running, jumping & catching balls within 24 hours of her 1st IVIG treatment. She had eye issues (her right eye was paralyzed looking in towards her nose) and that took a massive amount of IVIG to repair (like 300 grams given over 6 weeks). After 4 years on IVIG (just last summer) she was finally able to climb a rock wall.
There is usually improvement that you will notice first & then slowly the body will start to repair itself. You may not notice the small things at first until 1 day you go “WOW…I can do X now”.
AnonymousAugust 8, 2011 at 9:14 pm
I have been receiving IVIG treatments for CIDP for a little over 2 years. After the first treatment I was so sick that I didn’t recognize improvement in my strength for almost 2 weeks. Results have shown up quicker with subsequent treatments (a week or so). My treatment seems to last about 4 months. Have been on semi-annual treatment, but moving to 3 times a year now. However, the results from the IVIG are nothing short of a miracle for me.
Side effects can be brutal. Initially, I got a rash over most of my body that started a week after IVIG and lasted 6 weeks or longer, even with the steroid cream prescribed by a dermatologist. My doctor changed me to Gammaguard and added Prednisone (20 mg day before, 20 mg day 1, and 10 mg days 2 and 3). Not sure which made the difference, but the rash has not been seen since.:)
The headaches are another story. Pressure type pain (severe) with stiff neck and some nausea. Usually lasts 3 to 4 days. With me it starts the day after I have completed IVIG.
I do get Benadryl and Tylenol before IVIG. Learned last year to hydrate before and after (Smartwater and Gatorade were recommended).
The treatment is very effective for me but would love to find something to ease the headaches. Anyone had any success with headache treatment? I spend at least 2 days in bed after each IVIG.
AnonymousAugust 8, 2011 at 10:58 pm
Don’t expect ‘miracles’ right off the bat? For me, the change was just a little one at first – my numbness which was migrating towards the center of my body from arms and legs about 1-3 inches each month slowed down then stopped. Then it became less painful, you know how those dying nerves can protest or almost scream? They didn’t shout out their displeasure, just yelped it out now and then, then just continue now to ‘humm’ at a low pitch.
After my loading dose followed by another slow infusion 4 weeks later, I was able to walk and shop for a whole hour for the first time in a year! What a simple joy!
At first, it’d only last about 3-5 days, but that was soo much more than before!
Seek? I don’t know how long it’s been from your onset to getting the infusions? But now is the time to ask your neuro about finding a good physical therapy practice! I found it helped me re-learn to walk and regain balance doing at times, what seemed like simple or silly ‘things’- the exercises were not the ‘go get ’em’ sort of workouts, but rather slow and methodical not pushing yourself to ‘overdo’ type of ‘challenging drills’.. to overdo all at once is asking for potentially more damage.
Beba? I believe I’ve tried to answer your question on another post. I’ve found that a good solid nap once home from infusions helps too.- Good luck!
AnonymousAugust 9, 2011 at 2:14 am
I so appreciate all your responses!
Em’s Mom, I am not sure what dose she must be getting. My treatments started at 40 and then slowly taken to 60 and taken no higher (after learning a higher number caused problems), takes me almost 6 hours. As I understand it,my maintenance treatments will be single treatments, and they will be a higher dose. If my dr. Had been in town I would have been pre medicated and it would have gone so much better. Once we forced the nurse to get an oral thermometer and they learned how high my fever was,the dr, in charge went to the pharmacist who told him they should pre medicate me with benadryl and Tylenol. I was inpatient for five days for the five treatments.
My friends daughter, who had gbs, was treated with two treatments a day, two days in a row, and a final one the third day. I suppose as that is a more acute form, they may have been more aggressive and or lowered the dose.
The disabling symptoms started last October. They have gotten progressively worse, accelerating the past few mos. at a scary rate. However, the neuro that i am seeing specializes in neurapathy and my nerve conduction tests lead him to believe that only the myelin has been damaged, not the actual nerves.
I don’t feel as if I have lost much in the way of coordination, etc but I do plan to go to physical therapy, I have the orders already. I had stopped driving voluntary but I think I can resume now. I can lift my legs again.
One thing, I expect pain to accompany recovery of the nerve conduction. Is that correct?
Ty Ty Ty! Jan
AnonymousAugust 9, 2011 at 11:25 am
Hydrating (drinking water) while using IVIG is important to prevent aseptic meningitis.
What is meningitis? It is a bacterial infection of the membranes covering the brain and spinal cord. These membranes are called the meninges.
What is aseptic? Well, the ‘a’ refers to ‘not’ and the ‘septic’ refers to infected. Therefore, aseptic meningitis is meningitis that is not bacterial, or at least, no bacteria will grow when cultured.
What’s my point?
The point is that ‘we’ take in large amounts of IgG which has a half-life of 22 to 96 days. The doctors at Mayo Clinic, Mn told me that my headaches were caused by a reaction between the IgG and the meninges, which causes the meninges to swell.
The solution? Drink more water.
Now, for my Rhetorical question to ya’alls- Are you going to drink ‘more’ water on the day before and the day(s) after infusion only?
Or, are you going to drink more water up to the half-life, or beyond, of the higher IgG concentration?
It’s an individual decision.
AnonymousAugust 9, 2011 at 1:14 pm
While hydrating is a wonderful helpmate to mitigate all sorts of issues that can arise during ivig, aseptic meningitis is not one. While it is true that it is not bacterial it is not ruled out totally as viral. You cannot just flush it through your brain and avoid it. Some ppl will get it. However, it is important to note it is rarely life threatening, spontaneously clears up within two days usually.
If you develop this you are very likely to have it recur at subsequent treatments, getting milder until it hopefully goes away. Most ppl who get flu like symptoms do not get fevers, if you do and it is above 101.5, with a shooting headache from the neck you may, most likely do, have it. For some reason it is not discussed, hence treating nurses do not know. I was on a neurological unit of a renowned teaching hospital, no less prestigious than Mayo. They were used to seeing flu type symptoms but not fevers and seems they just do not treat many ppl with ivig inpatient. I have no idea why.
I told them all, I want something to calm me 1/2 hour before you start the treatments. The one day that did not happen, and I was hooked up before I realized it, I asked for it. The nurse said I could not have it until bedtime. It was just an anti anxiety pill. I had been given my first treatment at midnight due to ins dragging their feet approving them. The next one at 8pm the next day and this one was at 4pm day three so they had it in their heads it was a bed time pill. I said heii no, I need it now. The dr, did not come so after 30 more mins, I told the nurse, well, I have some in my purse, eff you. I took one. Oh, then the roof caved in. They said, you have to send that home, right. Now. Right. Already gone. Right. Punched the call button and sweetly told the nurse to tell dr. So and so to not come to my room. I did not need him. Everyone knew I took it. The orders were fixed and apologies made all around. I waited for him for 45 min, and was already 30 into treatment.
But, hydrating did help (I did hydrate before going in) a lot of issues, but the AM was not one.
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AnonymousJune 23, 2011 at 1:36 pm
My mom was diagnosed in 2007 with gbs/ sensory neuronopathy. She has been on ivig every 3 weeks to 4 weeks. She has always had severe headaches even with premedication. At the beginning of this year she was having a lot of problems with jerkiness, headaches, chills, and sleeping a lot. Ruled out any oral medication interactions. So we tried plasmaphresis and she all the symptoms resolved. She recently seen her neurologist and he started her back on ivig for maintenance. She had 2 doses last Thurs and fri 40gm of privigen. Since then she has severe headache, light sensitivity, chills, nausea, body aches. Headache better starting Monday. Then she started developing uncontrolable jerking, with dizziness and just feeling like her whole insides where shaking. I’m strongly feel she’s reacting to the ivig but drs aren’t so sure. She was walking with a walker last Thurs and now can’t walk after ivig. Any have any help or insite. Thanks
AnonymousJune 23, 2011 at 2:17 pm
It sounds to me as if she’s having an aseptic meningitis reaction from the IVIG. I would think if she did well with the plasmapheresis that should be her treatment instead of the IVIG.
I would call the neuro & explain what she is going through & ask for a plasmapheresis ASAP to see if it helps. Maybe the dr could prescribe a dose of steroids to help with her reaction.
Does she premedicate with Tylenol or Motrin AND Benadryl before each treatment? Does she drink water before, during & after each infusion? If she’s getting IVIG on consecutive days dr’s sometime order you take the premeds around the clock for the duration of the treatment schedule.
If that doesn’t work a dr will order a small dose of IV steroids to help with any reactions.
Did you mean she was diagnosed with CIDP/sensory neuropathy & not GBS? GBS isn’t usually treated long term with IVIG but CIDP is.
AnonymousJune 23, 2011 at 2:29 pm
Well they keep telling us it gbs not cipd. Its been 4 yrs and they still really don’t know. When we went to IU, he said that what she had affected her sensory nerves not the motor nerves and its a variant of gbs and they have been treating it more like cidp but wont give her steroids. Very frustrating for me because I am a nurse and none of it makes sense.
She does premeditate with Tylenol and benadryl and does drink fluids. I work in a cancer center/ambulatory center which is where we give her ivig. We run it very slow and do give some fluid afterwards.
The neurologist keeps telling us they don’t think its the ivig but that’s the only thing that has changed. She has decided not to take anymore at this point. So we are waiting for them to come back to insist on plasmaphresis. Thanks for your help.
AnonymousJune 23, 2011 at 5:13 pm
Does your mother see improvements from the IVIG?
What rate do you run her IVIG at the clinic? What rate do you start at? How many grams of IVIG does she get? Would her neuro be open to exploring sub-q IG?
I’m wondering because I’ve heard of people who need 12-24 hours to complete their infusions due to aseptic meningitis reactions.
Have you looked into taking her to Mayo or one of the foundation’s Center’s of Excellence? You may be able to at least get a firm diagnosis.
AnonymousJune 23, 2011 at 9:37 pm
She has received 40gm over about 7 hrs. Rate never exceeds 70.
She I don’t think has really never seen a response to the ivig that she has been hoping for. Ever since she got sick 4 yrs ago she has been walking with a walker or her electronic wheelchair. Still has numbness and tingling all over and no reflexes. Ivie was all they ever suggested. We requested the plasmaphresis in march because ivig just seem to be making things worse. Just last week before she received the ivig, she was walking with her walker farther than she has in a year. He told her since she is having knee surgery that she needed the ivig. She has regressed back to the beginning. Just frustrates me that u r suppose to be able to trust the dr treating u to make the right decisions.
We did take her to the IU med center here in Indiana to help with the diagnosis.
Thanks again for the responses.
AnonymousJune 24, 2011 at 3:15 pm
I, too experienced terrible headaches. After 3 months with unrelenting headaches/naseau/vomiting – and a 25 pound weight loss, neurologist changed brand from Gamenex to Gamagard. I get weekly infusions and get infused at a starting rate of 50 and only recently (after 8 months) moved to 55, then 60 rate. I receive 25 grams now, down from 30 grams. Benadryl before during and after infusion; benadryl at night until day 4 post ivig (or until the inflamation in lymph nodes goes down). Tylenol for post ivig malaise and aches. Migraine meds at night after infusion, typically one or two tablets within 24 hours of infusion. Headaches are now manageable. Push back hard if you are experiencing headaches – call your pharmacy to get their input; consult with your GP for moral support. Let your neurologist know you are not satisfied. When I put my findings in writing to my neurologist, with a copy to my GP and pharmacy (ivig supplier) I finally got some action. Hope this helps.
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AnonymousNovember 22, 2010 at 10:49 am
i know it is somewhat consistent with everyone to get a headache after their treatments.
Does anyone get really dizzy almost like vertigo a few days afterwards?
also, does anyone smoke? i know it’s a silly question but i was just curious if that affects anything other than the obvious..not good for anyone reason.
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