AnonymousMay 13, 2006 at 4:40 pm
I have been debating, as many of you know how this goes, with my neuro for over a year now. I have tapered from 5day/mth treatments to as little as 1day/mth. Nothing has taken me to a remission point. Don’t get me wrong, IVIG works for me but my neuro is too scared that it will cause long term problems with organ systems to continue taking it regularly.
I have finally, this week, convinced him to allow me to try 3days every 3 weeks. I’m hoping this will keep me up and moving, as they seem to wear off by end of second week. I have also been fighting other colds/illnesses that go along with Spring weather and this is keeping me from recovering well. I spent last week and half not able to stand, let alone walk. I took my 3 days finishing yesterday and finally have strength enough to attempt to get some light housework done. 🙂
So, here is what I would like help with. I see my neuro again next month and would like to be able to take with me a list of other patients regiment of IVIG treatments. ie.. how long you have been taking them, how often and how many days in a row you have taken them. Also, what recovery have you achieved by this therapy.
If you could keep your basic responses as short as possible it would be great, since I want to print this out and take it with me to the appt. If you have more info you are wanting to add, please make a second post and we can all read it but I want the tally for his quick reference and my “In his face”:D .
Thanks all and wish me luck that the 3 week course will do the trick. My daughter really misses having mommy be able to push her on the swing. 🙁
AnonymousMay 13, 2006 at 8:35 pm
I’ve been on IVIG since February 2000. I have always taken one 40g infusion every week of Bayer Gamimune N or the new formula Gamunex. I have had times when I was on more frequent – 40g infusion twice weekly – after a cold or other infection. In 2004 I was on twice weekly for most of the year and then again in 2005 for most of the year (usually late spring until just before the holidays). This was because CIDP for me is progressive.
I have never had any problems of any kind in other organ systems. I get blood work done every quarter checking liver and kidney fuctions and never had bad readings. Everyone is different, but I don’t think there is any worry about the IVIG causing problems. I suppose the possibilities of blood-borne diseases is a concern – but I just choose to have selective recall about that stuff (ie. I just don’t think about it). 😉
AnonymousMay 19, 2006 at 4:09 pm
My daughter (cidp) was receiving 3 days ivig every 3 weeks, and just like you, it was not lasting until her next session. After many months of pleading, and another change in Doctor, she has been on 1 day a week for the past month. The difference is like night and day! On the 3 day/3week schedule, the best we could hope for was to get out of a wheelchair, but not functional. Now, on 1 day/1 week, her improvement still amazes us – almost no foot-drop, able to walk up ramps and small steps, dress herself, and many other things you normally take for granted.
It may take some experimenting with your dosages, but keep at it. You will know when it feels right. The doctors take a practical approach many times, but we take a personal approach everytime!
Hope this helps you find your groove.
AnonymousMay 19, 2006 at 4:51 pm
I was dx. with GBS Aug. 2005. At that time I was given IVIG 40 gms per day for 4 days in a row. It worked for about 30 some days then I would get weak again and have difficulty going up the stairs again I was treated with the same dosing. The same thing happened a 3rd time and I was dx. with CIDP started on CellCept 1000mg 2xs per day and given another 4 days of IVIG. That neurologist wanted to keep treating me like that. Wait until I became weak then treat me in hopes that the CellCept would eventually be enough, he to was concerned about the poss. side effects of the IVIG. That is not a very stable way to live your life. I was having a hard time scheduling work etc. I also questioned how healthy is it for your nervous system to keep having relapses with repeat destruction to the mylin sheath.
In Jan. 2006 I switched neurologist. I now get IVIG 60 GMs every 30 days. This works great so far for me. I am much more stable and I am able to work part-time as a nurse on my feet all day. I do experience more burning in my lower extremities on the days I work but maybe in time this will get better! I also take Neurotin 900mg 3x per day.
Hope this is helpful.
May 19, 2006 at 4:57 pm
I did 34 grams every 21 days for 10 years. NO PROBLEMS
This held me in “remission” for the entire 21 days. If I stretched it out it was like I fell off a cliff. Wham, I could barely walk. No IVIG now as I had a bad reaction and doc will not prescribe it any more. After being surrounded by 3 docs, lots of nurses, plenty of needles and oxygen, I guess I’ll go with the doc. He says next time may kill me. Any way, I would find a cycle that kept me basically “symptom free” and run with it. Here’s to IVIG it is the best.
AnonymousMay 19, 2006 at 6:01 pm
We’re all different and what works for one, may not work for others. I did very well with IVIG’s. Once I got past the agressive series and was on a maintenence, I had IVIG’s one day, twice a month for about three years. Then I became aware that they were like water being dripped into me. I never felt any better and I never felt any worse. My neuro listened and silently observed. My IVIG’s were stopped 2 1/2 years ago. I receive nothing for the syndrome, no pain meds, NO NOTHING and I don’t relapse at all.
May 19, 2006 at 8:33 pm
I’m coming up on the first anniversary of my getting GBS, While most mornings are ok, the brain fog and fatigue hit in thr early afternoon. I guess my question is would another shot of IVIG sayonce a month help. I’ve been thinking about this lately, glad the post is up again.
AnonymousMay 20, 2006 at 8:21 am
Karen – I received 2 G of Gamunex per kilo of weight (1 k = 2.2pounds) every 4th week, from August of 2004 til January 06 – In the really big picture (not on a month to month comparison, but on, say, a 6 month comparison) I could feel myself getting better. In January 2006 my neuro changed dosage to 1 G per kilo of weight and asked me to try this for 3 months – at end of that time I had started to loose ground and was pretty miserable – had one round back at 2 G per kilo…great! – and now we are going to try reduction another way – .75 G per kilo every other week. I think these formulas are designed to get maximum for patient considering all factors, weight, age, degree of severity of GBS/CIDP.
I believe this is all to see if Imuran (200 mg per day which I have taken since August 2004) is working and can take over for IVIg. Had been on high dose of prednisone along w/ IVIG and Imuran – weened off prednisone from Oct 2004 to Nov.2005.
I had PP before IVIG and believe me, living with IVIG is much easier to deal with. Hope you find solution for your individual case – Bonney
AnonymousMay 20, 2006 at 9:23 pm
I just read over some of the posts on this thread and it hit me that, since we’re rebuilding this site after Dr. Hacker destroyed all of our years of information, I ought to volunteer some more information I’ve learned about IVIG.
IVIG infusions are only supposed to work for up to 28 days maximum. Ig concentrations in the body increase by more than 10 times during the first 48 hours post infusion and then begin to taper off slowly down to normal during the 28 day cycle. Therefore, if your CIDP is still active, aggressive, or if you are like me and have the progressive form, the usual infusion “blast” given for several days in a row every 3 to 4 weeks probably won’t do much for you near the end of the cycle.
Allot of neurologists don’t think IVIG should be given weekly or multiple times each week, but I’m living proof that this kind of aggressive schedule will work with limited long-term side effects. IVIG is expensive and I feel that sometimes this effects the treatment plan as well.
Hope this helps!
AnonymousMay 21, 2006 at 1:51 pm
I am on ivig every 2 weeks 120 grams of gamunex . And have been for 21/2 years. If I try to stretch the time [which I have done] I end up in a wheelchair and I can’t even turn the key on in the car. I have had absolutely no side effects from the ivig. My blood work is taken every 2 weeks also . I am now on cytoxan , trying to fight this hellish disease.
AnonymousMay 21, 2006 at 9:32 pm
Oct 2002, onset of G B S. quickly turned into C I D P, and MS.It took till mid January to settle a schedule of meds. I V I G every 4 weeks, 3 days in a row. Also 200 Mg Imuran daily and varying amounts of Prednisone every other day. Lower amounts not holding me. Presently 40 mg eod. All was going quite well till Feb.when Neuro suggested stretching the weeks between treatments. I agreed, and tried 6 weeks twice, and also lowered Pred.from 45 to 35 mg eod. It has been very destructive to me. So, I am returning to old schedule. From what I have read here I may even ask for a three week span for the summer , or until I get built back up. Thanks for opening this subject.
AnonymousJune 22, 2006 at 8:59 pm
This is what my doctor said today when I went in walking like he had never seen me before and did a couple jumping jacks immediately upon him asking how things were going. So THANK you all for your information. I didn’t have to beg and plead with him to keep on the 3 days every 3 weeks schedule. I left his office today wit a standing order inhand for the next year of this schedule.
On another note, I”m sure you all will get a kick out of this. He says that we must have all gotten wording mixed up from MS and crossed it over to CIDP as there is no suc hthing as a relapsing/remitting or progressive type of CIDP. I laughed out loud and said well this is information we have gotten fro mthe GBS foundations website. He simply shrugged and changed the subject. I was not going to get into a debate with him before I got the IVIG Rx in hand. I simply felt relieved and glad that I “Have cinvinced him” and patted myself on the back AFTER I left his office.
Hope all stays well and you win your Dr battles too.
AnonymousJune 23, 2006 at 10:27 am
Glad you were successful in this latest round of doctor vs. patient. I was blessed to have an outstanding neuro team overseeing my GBS last year, but I’ve heard and read enough anecdotal horror stories from others to appreciate how stubbornly ill-informed a lot of medical professionals can be when it comes to this disease.
I have to admit, though, that I’m confused about this IVIG issue, especially the notion of an ongoing long-term IVIG regimen. Through my experience I’ve come to think of GBS as having two distinct parts: 1) the demyelination caused by an immune system malfunction and 2) the damage done to the nervous system by the demyelination. My understanding has been that the IVIG tackles just the first part and that only time (lots of it) and your own body can tackle the second part. But my understanding doesn’t square with your experience or that of all the others who have responded to you here. All of you seem to have found relief from ongoing IVIG and have regressed when the IVIG stops. Unlike some of yours doctors, I find your testimony compelling.
Does IVIG do more than just correct the immune system malfunction? Does it actually help deal with the residuals? Or is this a matter of your immune system malfunctioning again and restarting the disease whenever the IVIG starts to wear off?
AnonymousJune 23, 2006 at 7:26 pm
I am anything but a personal experience expert and I wonder if part of your confussion may be the diferent between GBS and CIDP. If I’m understanding correctly, you had GBS. I, as well as many posting replied here, have the chronic version, CIDP. In my case my immune system is further compromised by Celiac Sprue that has caused my CIDP. Without my IVIG treatments regularly all my symptoms return and many worse than they were to start with. I hope this helps and if I’m not correct on why you are confused here, PLEASE, someone let us both know. Thanks.
AnonymousJune 26, 2006 at 12:40 pm
Thanks, Karen. That’s helpful
Bummer about the CIDP thing. I apologize for my ignorance about it. I thought the “chronic” part meant that it gets bad, hits a plateau and takes forever to get better. Didn’t realize that it keeps getting worse and essentially relapses when you go off your meds. Must be like reading War and Peace and starting over every hour. Makes me feel a little wimpy for whining about my hit-bottom-fast-and-get-better-slowly-but-surely variety of GBS.
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