How long until IVIG works?
AnonymousAugust 22, 2006 at 1:34 pm
I started IViG in late June, and had four more biweekly cycles. So far I’ve had no benefit- the pain and numbness are a little worse than when I started. Meanwhile, I’ve had some nasty side effects, most notably a rash that goes literally from the top of my head to below my waist. I itch constantly- it’s like having chicken pox.
I’m going to suspend the IVig for now- I have an appt. to see my neurologist in a couple weeks, and we’ll decide what to do then. Meanwhile, I’m thinking of looking for a second opinion…. I just don’t feel reral confident just now
AnonymousAugust 22, 2006 at 4:45 pm
Our son is 2. He had his first IVIG in hospital in November. He was officially dx. in December.
He received the treatment on a Thursday night and the following Wednesday, we could see a difference. He was doing things he had not done in a couple of months, things that he lost the ability to do.
It was amazing. I remember writing the dr. an email and saying it was the best Thanksgiving ever and I really meant it.
Best of luck.
AnonymousSeptember 10, 2006 at 9:39 am
I was quite ill before starting treatment. Still shuffling about, but struggling like crazy. I started IVIG on a Monday and had it through Wednesday. I got ill from the IVIG at first, but by Friday I felt stronger, was walking straighter and could even stand on tiptoe for a while. By a month later, I was back to doing fitness classes.
IVIG has been great for me. I still get a little sick (nausea, headaches) from time to time, but I’m so grateful that it’s brought me back, almost to normal.
AnonymousSeptember 14, 2006 at 9:20 pm
IVIg never worked for me. My neuro told me it doesn’t work as well for sensory CIDP. I only had chills and fever after the first one. Then my dose was slowed down and no problems after that. That was in 2001-02 and haven’t had any more infusions.
I am a “progressive” patient, but I’m getting progressively better. I hope that encourages some of you! 😀
AnonymousSeptember 15, 2006 at 9:27 am
IVIG has been a life saver for me…….each time I recieve a treatment I can notice a distinct improvement with in a couple of days. Remember to drink lots of water before each treatment and ask for some benadryl and even tylenol to ward off any bad side effects.
AnonymousOctober 5, 2006 at 11:04 am
After the first round of IVIG, Oct. – Dec. last year, there was not noticeable difference. So we quit and tried Prednisone this spring. That turned out to be a total disaster. I lost control over my legs and needed to get a rollator to be able to move around. We stopped the Prednisone and started IVIG again in May. This time there are significant improvements. I don’t need any support inside the house, hardly any balance problems, just outside I usually use a cane. Since improvements are not very dramatic, I can’t tell exactly how long it takes after each infusion to be noticeable.
I do need to point out that I have a variant of CIDP and my reactions are probably not very typical.
AnonymousOctober 8, 2006 at 8:51 pm
I’m presently getting IVig every 6-8 weeks. I usually notice some effect on my symptos of numbness in my tongue and chin within a cople of days. About 2 weeks after, I’m at my best re: energy and activity. From 4-6 weeks the symptoms come back and when my tongue gets numb, I know its time for more.
I keep hoping the time between will get longer, but it has’t happened yet.
AnonymousOctober 8, 2006 at 9:45 pm
After 2 5 day rounds of plasmapherisis I made great recoveries that lasted about 4 weeks. After my recent relapse and an official dx I underwent a series of 5 treatments and now am on weekly maintenance plus 80mg of prednisone. I began noticing improvments from the IVIG about a week after the first dose. The most recent relapse has me wheelchair confined but I am positive about the progress – I can now bend my leg with little asistance and can use my hip flexors. No one said recovery was easy – I think my body finally gave in after 3 acute attacks in 4 months, now the Dr. is trying to get me back as best as possible and keep the next attack away. Trial and error I guess. I have one Dr. that told me to remember that medicine is an art NOT a science.
AnonymousOctober 24, 2006 at 10:50 pm
Has anyone out there gone BACKWARDS with treatment with IVIG? My husband did well the first 3 treatments, but this past time, the fourth, he is much worse- very weak. He is a 250 lb 6-1 farm boy, and usually his hand grip would take your fingers off- but today I could out-grip him. How rare is this? Anything else I should be leary of?
AnonymousOctober 27, 2006 at 1:46 pm
I am newly diagnosed, but had progressively worsening symptoms for almost 7 months! By the time I could get an appt. with a neurologist and have tests, I was in a wheelchair (broke my leg from weakness in lower extremities), and my hands and arms were nearly paralyzed. I could not lift a glass, get up from the potty without being lifted by my husband, and emotionally felt that my life was slipping away. Thank God my neurologist immediately put me in the hospital and on a 5-day course of IVIG. By the second day I had feeling down to my fingertips and toes! I could literally feel the miracle juice doing its work. I know that I am fortunate that it worked so quickly and so well. It has only been 1 week since I was released from the hospital – I find that every day is better and better. I can do things that were impossible two weeks ago! Although I still have a little tingling in my fingertips and toes, it is nowhere near my lowest point. I can be happy with the 90-95% increase in energy and recovery of mobility. I am optimistic about my future – I know there is help out there now. Good luck to all of you and keep trying new treatments. XOXO
AnonymousOctober 27, 2006 at 9:35 pm
with me, my first infusion took 9 1/2 hours and when i woke up in the morning, i had my vision back! i had double vision in addition to being paralyzed. now after 5 years post gbs, i’m left feeling asleep from the nose down and partial permanent paralysis in left hand and knees.
AnonymousOctober 28, 2006 at 7:46 am
This is my first post on this new system, finally back after GBS fixed the nightmare they had with some hacker of the system.
Anyway, IVIG is my life saving treatment. Went 35 years with undiagnosed symptoms and in Feb 2004 was finally diagnosed with CIDP and was given IVIg as a trial to see if it help my spin downward. Bottom line: got up out of the wheel chair that day, spinning 24/7 reduced to mild dizziness, electric shocks reduced to almost nothing, sore skin reduced, chest pains stopped, breathing improved, and what have you.
Now after getting IVIg for over two years plus, I would describe my reactions to it as a crooked bell curve. I get 40 grams every 21 days and I immediately notice my feet changing from numb to thick rubber or thick rubber balloons, increased feeling of pressure pain on urination, breathing better, and I spinning sensation really is less and I stop running out of breath on talking, but it does not seem to have any effect on the feeling of numbness and the sense of fatigue and exhaustion still has the same four hour cycles requiring that I rest for a hour or so.
Then for two days after I get IVIG I actually get feeling increasingly tired and exhausted and on the third day I begin to feel much better and continue to feel better up to day 12 when I seem to peak following by a very slow up and down increase in symptoms until I begin to have trouble breathing and talking at the same time just before the infusion and sometimes on the 1st day of the infusion they give me oxygen and that really helps but by the second day I am okay again.
It took a long time for the doctors to figure out that I needed to have the IVIG infused at no greater rate than 30 ml/hr with lasix before and after otherwise I would begin to drown in the fluid volumn. After changing to the Gamunex brand that is premixed and less fluid volumn I had less reactions and seemed to tolerate the infusion better.
Anyway, IVIg is giving me life and a chance to help others and write my book on my experience with a focus on helping others cope and beat CIDP.
Blessings to all…it is good to be back.
AnonymousOctober 28, 2006 at 2:40 pm
I am glad to hear that IVIG is helping you. I have a question, have they ever tried to increase your total number of grams that they infuse?? The reason I ask is that by weight I should get 30 grams every 3-4 weeks, I was also having a horrible last week right before my infusion. They doubled my dose to 60 grams and I now go from infusion to infusion without all the ups and downs. Just a thought in your case, maybe you could ask, IVIG is very expensive so don’t be surprised if they are hesitant. The reasoning my Dr used is that the half-life of IVIG is 21 days, so at the end of week 3 I had only half of the infused IVIG left, doubling the dose and now have 30 grams in me at the end of 3 weeks.
That is my total unscientific understanding anyway so I hope that makes sense. It sounds like you really struggle that last week so I hope maybe it can help you.
AnonymousOctober 29, 2006 at 1:19 pm
[COLOR=”Purple”]This is for Sigrid. Yes, I have gone backwards. I too noticed improvement the first three months on IVIG, but since then nothing! My weakness is worse in my legs and especially my arms..and the pain in my arms and back is much worse. My vision has deteriorated greatly (not sure if related) and I get tremors in my hands and legs. Sometimes I feel like I’m receiving $6000 worth of water every 28 days. I had symptoms for years before seeking treatment when I could hardly walk anymore and literature says the sooner you start IVIG with symptoms the better. I’ve always wondered if that isn’t part of the problem. I waited too long. Take care…Vicki[/COLOR]
AnonymousOctober 31, 2006 at 5:40 am
When I first was given IVIg back in 2004, the neurologist at that time thought I was to be given 80 grams but never followed up on the doctors office who was giving the infusion who set it at 40. Then there was the shortage of the IVIg in February 2005 where I could not get it and almost was done in because I finally could not breath. But then in the emergency room they gave me my 40 grams and I came back to “as good as it gets”.
With all of this and my new Neurologist I asked him about the 80 grams and he never really did give me an answer. The hospital say they are loosing $10 a gram but continue to give me the 40 grams.
Now with all of that I too wonder if getting more would help as I really feel like I am on a rolling coaster ride between dosages…and like some other here have found that for two days following my infusion my fatigue and weakness actually increase after a short immediate spike the day of the infusion. Then after two days I begin to climb up to the state of “better” defined as “as good as it gets”.
So bottom line…after your question…I am going to give my request to try 60 grams to my Neurologist and see what happens. Maybe I could feel a little better and not loose my ability to talk and breath at the same time in between infusions.
Thanks millions for bringing this back to my sort of conscience mind…what ever is left of it…. ha.
You must be logged in to reply to this topic.