IVIG Make u week?
AnonymousJune 17, 2006 at 8:31 pm
I’m surprised that I V I G makes you weak. It has the opposite effect on me. I feel like I’ve just eaten a bowl of Wheaties. ( Flexes my muscles).
I also get 3 days in a row every 4 weeks.Actually I have 25 Mg ,whereas you get 40, but I think that goes by ones body weight, but I’m not sure. I do know that there are others that have negative effects on I V I G. I hope this will begin to work well for you.
AnonymousJune 17, 2006 at 8:54 pm
my doctors put me on five days of IVIG and right at first it makes me feel great.after five days when I go home I have about three days of really being weak. Then it seems I get my strength back and I’m good for about three or four weeks. I have had five treatments and now my doctor wants to see how well I do on the new drug he put me on. So for it has been a little over month, and considering I broke my foot on the 24th of last month I am doing great. Maybe just takes me a few days after the treatments to adjust.
we learn as we go. I hope you feel better
AnonymousJune 17, 2006 at 9:31 pm
[B]KC’s Mom[/B] yes , it goes by body weight. Last time I got 3 x 60 grams. I weigh 220 lbs.
[B]Soapy[/B] I was weak for almost five days with flu-like symptoms. I suspect in some cases our body reacts to the foreign antibodies as an intruder. This would explain the flu symptoms and weakness. Why IVIG doesn’t effect everbody the same way I have no clue.
AnonymousJune 17, 2006 at 9:37 pm
I can’t believe that your Dr wont put you on some kind of a schedule based on how you react to your infusions, and when you start you slide bakwards. I went as long as 5 weeks, didn’t work well because I felt like crap for 10 days or so. He put me on 4 weeks or less and it seems like a perfect schedule for me. I weight 205 pounds and I think I am getting 30 grams now, my weight fluctuates some so my grams do also. Last month and this coming infusion I am getting double doses of 60 grams to give me a boost and see if I can make it the whole 4 solid weeks and never suffer the decline. I hope that makes sense, I would push for a set schedule so that you don’t have so many ups and downs.
AnonymousJune 17, 2006 at 10:18 pm
Yes, I think I need to be on a scheduel. I live close to ericvance and JohnC. I plan on going to see my nuro when i get over this, see wat he says about that rituxian.
I talked to eric, he is doing well compared to where he was, and to where I am. He is going to talk to em at dr U’s office and see if they might be interested in taking me on also. I’m game fer it.
AnonymousJune 17, 2006 at 10:36 pm
[quote=norb][B]KC’s Mom[/B] yes , it goes by body weight. Last time I got 3 x 60 grams. I weigh 220 lbs.
[B]Soapy[/B] Why IVIG doesn’t effect everbody the same way I have no clue.[/quote]
*sooo, Norb doesn’t know everything*:)
Is that pretty much the norm there Norbert? wat about the rest of u? I mean is everyone getting 3-5 dayz , about 4 weeks apart? I hope I’m not being impolite by asking.
I feel much better tonight, this is the 3rd day since infusion. I stood up and was able to take a few steps. The muscles are tight, and its like , whose legs are these? I just got to walking again this year, I’m bound and determined not to loose that again.
PS . For those that don’t know, Norb busted me in the geography game (link deleted by administration)
He’s sharp as a tack, ck out his web site, he’s a well educated, travelin man. peace norb. God Bless
AnonymousJune 18, 2006 at 8:17 am
[I][I]just finished a 3 day 45/g /day ivig infusion. I had gotten off of it for awhile. I haven’t been getting as sick as I used to get. boy, I am weak. Much more than when I started the infusion. It seems to take me about 3-5 dayz to recover and start feeling human again. My doc won’t put me on a schedule. Have to wait until I start getting weak. Then it takes a few dayz to set it up.. I hate to start lying, but I make it about 4 weeks before I start going downhill. At least right now. Talk to me…[/I]
It’s my understanding that ivig remains active in the body for approx. 28 days so perhaps that’s why your neuro has you on a 4 week schedule.
I receive 400 ml every two weeks – my body can’t tolerate a higher dosage because I develop a full body rash otherwise.
I don’t think that it’s lying if you tell your doctor that you want a scheduled program of ivig treatment. We had to experiment a bit with ivig treatments before we came up with the correct schedule.
It usually takes a few days for my treatment to make me feel a bit stronger. The day or two following a treatment I usually have a bit of an “ivig hangover” – flu-like symptoms, headached, etc.
Talk openly with your doctor about your ivig experience.
AnonymousJune 18, 2006 at 10:34 am
I agree with the others that you need a set schedule. Once you start to decline it’s harder on your body to get back to “normal”. It just doesn’t make any sense to wait until you get a flare up to treat you. You need to have a constant flow of IVIG to keep the CIDP from flaring. Once your body absorbs that IVIG then that is when the CIDP can get control again. Bottom line, you need IVIG more frequently.
If my daughter doesn’t drink enough water then she gets the flu like symptoms after an infusion. Are you making sure that you stay hydrated before, during & after the infusion? It really does help alot!
AnonymousJune 18, 2006 at 5:36 pm
I receive 120 grams every 2 weeks and it took awhile to figure out a schedule for my body and my degree of decline.. I am a little weak after the infusion for about 10-12 hours. Then I’m doing great for two weeks and boom downhill again. i am on the Cytoxan now and we are hoping that will increase the amount of time between infusions. If you wait too long it takes too long to come back to life. believe me I’ve been doing this for 21/2 years and tried it all. no better/ no worse. Just always hoping.
AnonymousJune 18, 2006 at 7:59 pm
Just like you, we are on the “wait and see what happens” program. My daughter has been on ivig non-stop since Oct ’05. We were doing great just a month or so ago, when she was receiving 36 g once each week. This has been our most sucessful schedule, but unfortunately, as soon as she could walk steady (shoes still a problem), we went back to the wait-n-see plan. Only took 3 weeks, and she became completely bedridden. Our experience with ivig is very good when she gets small amounts on a regular basis (maintains a consistent “trough” level) – little or no ivig hangover and has immediate positive results.
Today, day 3 of 5, ivig given in hospital, she continues to grow weaker, and is being monitered for respiratory problems. Each time she gets bad enough to require a full 5 day dose, her response to the ivig is delayed approx. 5 or 6 days (here I’m just guessing that it takes longer because all of the good stuff has been depleted from her system). Then several weekly infusions with good results. Wash, rinse, repeat.
I hope that Rituxan is the magic bullet for you – let us know how things are going.
we’re not lying – we’re predicting.
AnonymousJune 18, 2006 at 8:31 pm
My heart goes out to you. It must be very hard to watch one u luv suffer so. I pray things will get better for your family and loved ones soon. It doesn’t matter how things get, all we have to do is look around and we can easily find someone in worse shape than ourselves. May the Good Lord Bless u this very day.
AnonymousJune 19, 2006 at 12:29 pm
My ex-neurologist was the same way. He would wait until I became weak then I would e-mail him, he would need to see me, I would schedule an appt. then his office would have to set up a 4 day infusion schedule at my home with the visiting nurse. All this was very frustrating, time consuming and not necessary. It was hard for me to work as I would keep becoming weak every 35 days or so then need infusions.
So I went for a 2nd option at another teaching university hospital. Now I get IVIG every 30 days 60GMs (I weigh 125 lbs.) and I take CellCept 1000my 2xs per day.
Since the 2nd option in Jan 2006 I am working part-time and can do almost anything I would like to do with some limitations. I can even plan vacations now. I certainly have much more control over my life. Thanks to the 2nd neurologist I saw. I just saw my neurologist 2 weeks ago and everything has greatly improved since last Jan. including my strength and reflexes.
Good luck to you! I hope you are able to get more control of the symptoms, I can not imagine the neurologist would want to live like that.
AnonymousJune 19, 2006 at 1:48 pm
Well I just went through 5 days M-F last week and let me tell you this weekend was well, lets just say it was bad. I was so weak on Saturday that just going to the restroom seemed like running a marathon…..I don’t remember ever being so weak and fatigued but…..today I back at work and feeling stronger than before the treatments….go figure….
AnonymousJune 21, 2006 at 9:41 am
[QUOTE=soapy]Is that pretty much the norm there Norbert? wat about the rest of u? I mean is everyone getting 3-5 dayz , about 4 weeks apart? I hope I’m not being impolite by asking.[/QUOTE]
From reading different posts it appears that there are some people getting IVIG less than 4 weeks apart, others more. It probably depends on their situation and the neuro. The very first time I received IVIG over 5 days but smaller amounts each day. The next time four weewks later it was over three days with larger amounts because I was not having any side effects.
[QUOTE]I feel much better tonight, this is the 3rd day since infusion. I stood up and was able to take a few steps. [/QUOTE]
That’s great, Soapy. I would think it takes a while before the myelin grows back. So you should see more improvement over time. But then the IVIG will wear off and you’ll need another treatment
AnonymousJuly 8, 2006 at 11:05 am
I just finished three days of IVIG, a total of 180 grams of Gammunex. This is my third round since the end of last year.
Two hours after the first day of infusions I started having flu-like symptoms, body aches, slightly raised temperature, feeling miserable and fatigue (I guess you could lump all this together as feeling weak). It lasted all evening but was completely gone the next morning. The next day it took about 4 hours until symptoms kicked in but much milder. The same happened yesterday, still feeling a bit miserable, temp was 99.2. This morning I feel pretty normal again.
The whole thing appears to me as if my immune system recognized the foreign material and reacted to it the same way it would to a virus, trying to neutralize it. Or maybe it is the other way around, the antibodies in the IVIG triggered the immune reaction.
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