Please friends, you have all helped me so much. I had my first five days of IVIg that ended Friday. My had was splitting!!! I would say I got about 30 percent of what I lost back. Is that pretty much it? Or do the positive effects of IVIg continue and for how long? I still can’t really use my right arm much, my back still hurts and my feet are still a little numb. I guess in reading that many of you were back to your normal selves after IVIg, I just don’t know if that happened during the five days, after, or if some people were not as far along as I am to begin with. Does each succeeding IVIg make you better and better? Really need help. I admit I am panicking a little, having dreams of being paralyzed.
Hi Jo,
Can't really tell you too much........only my second round. After the first I began to feel better as the time went along. When I had let it go too far before this next infusion, I really noticed the backward slide. I do notice that my back pain which wasn't as bad as yours, is better. My feet still tingle and feel somewhat stiff when I go to bed........hoping that that will get better.
Anyway, please continue to be positive........panicking will only set you back. Be attuned to your body as you go along And see how it goes. Stay cool and open to any improvement you might notice!
Jen
Thnx jen!
It takes a few infusions to get back to what you were before you got sick. I couldn't walk when I was first diagnosed but after 3 rounds of the IVIG I could run around again. Now I only seem to feel a downwards slide around the 5 week mark after my infusion ( I only get mine every 8 weeks because I'm 15) but I feel fine the rest of the time :)
Thank you, thank you, thank you Charlotte!! You have given me new hope that I can still improve. It feels like I just found a million dollars on my doorstep. I am so sorry you have to deal with all this difficult, terrifying stuff at such a young age. You shouldn’t have to think about anything but school and having fun. Yet here you are, counceling older people like me about our disease and making me less afraid and more hopeful. You are a truly special person and even though I am so sad you are also suffering with CIDP, I am so grateful you are here to help me. Thank you fron the bottom of my heart. I live in NY and have always dreamed of going to Australia. Bless you, my new friend Charlotte 
My experience is that the full effects of my treatment don't kick in until a few days after the final round. So, you might expect to get a little better in the next few days.
Also, it takes a few rounds of treatment to get the full effect. What happens is that you get a certain amount of IG in your system with the first treatment. Over the days and weeks it gradually diminishes, but you will go back before it is completely gone, so you still have some in your system. Then you get the next round, and you are back to a higher level than you were after the first time. This also diminishes, until you get the next round, at which point it is still higher. Eventually, you reach a sort of plateau and the amount in your system doesn't really get much higher with each treatment, but you sustain that level by going regularly. So, I would expect to get some more improvement with the next few treatments.
I should point out that everyone seems to respond differently. Mine seems to work in just a few days, but others say that it takes much longer. I have talked to a lady who goes to the same clinic as me, and she said that it took about a year to really begin to see much improvement. We have the same neurologist, and he told her that she happens to have a very severe case, so it is more resistant to the treatment. I don't want to be too negative, but don't give up if you don't get a big improvement at first.
Finally, in my case, I was unable to even stand up when I first started. So, being able to stand and walk was a huge improvement, and I felt myself very lucky. But, even now, I am weaker than I used to be before the CIDP started. Steps are difficult (but I can do them), and I get fatigued pretty easily. My feet are still somewhat numb, but not enough to cause me problems walking. But I have resigned myself to the idea that I will never be back to the same condition that I was in before this started. I am just glad that I am still pretty functional.
Good luck, and never give up!
Had IVIG several years ago. had a severe allergic reaction ! Chemotherapy several months later,have been living with CIDP since 2003.Was 72 then,still walking(ouch) !!
Thank you so much friends. You have renewed my hope that the treatments will improve. When I was diagnosed last month, I was walking with a cane and could barele use my right arm & hand. I am still using the cane for balance. I feel like I have made arounda 30 percent improvement so far but am hoping for 100. I did well with the treatments, until day five. That is when the unbearable headache, neck pain, nausea & vomitting hit. It lasted about two days. Has anyone else had these side effects and if so, what did you do? Jo
I am so sorry that this is causing you so much stress. Try to relax a little if you can, I do understand how you feel.
I have had IVIG for close to a year now and will not be taking any more, I suppose. My side effects are just too many and it seems that the benefits are beginning to wane. However, for the benefits that I did get, it seems that it took about five days or so. How many treatments did you take?
At one point, about 10 years ago, I had an acute episode. I needed a cane and I was falling quite a bit. I think it took me 3-4 months to get back to "normal". Normal means about 80% of full strength. Since then, the IVIG has kept me in pretty good shape. I get it every 3-4 weeks. Give it time, continue your treatments. If you are like me, you will recover substantially. Headache goes with the territory. Perhaps your doctor can prescribe Imitrex of Butalbitol. Both are quite effective for headaches.
Thanks Evan, I really appreciate the info. jo
I am new to this and have only had my second round of IVIG. I seem to have more flu like symptoms after I have my IVIG, and then the following week my tingling and numbness increases. I don't feel that the treatment has made much difference with me yet, but I'm told that everyone is different, and it could take days or months to notice a remarkable change. Don't panic! Stress can make your symptoms worse. My advise is to take one day at a time, and try to stay positive. I know that is easier said than done, but focus on the little improvements (if any) and know that it could be baby steps in improving. I wish you the best, and hope that you begin to feel better very soon!
I have been on IVIG for almost three years. It does take time for it to work. Please have patience. I am on it every two weeks with minimal side effects--a headache, fever, and slight muscle aches. Usually I am better in a day or so. I would tell you to keep it up. When I first started, I noticed a big difference by the third run of IVIG. Now it wears off faster but I am still walking pretty well. I have a lot of faith in it.
Thanks so much for all the advice. You have all spoken from your hearts and I am grateful. I am trying to handle this well but have so much anxiety. Does anyone have intense back & hip pain, like your hip is on fire? Did the IVIg help that pain at all? Is anyone on Neurotonin? Does that help pain? What side effects did you experience?
Doggymama said:
Thanks so much for all the advice. You have all spoken from your hearts and I am grateful. I am trying to handle this well but have so much anxiety. Does anyone have intense back & hip pain, like your hip is on fire? Did the IVIg help that pain at all? Is anyone on Neurotonin? Does that help pain? What side effects did you experience?
Gabapentin 300mg as needed(generic Neurontin) .I have had no adverse effects,Pain is always there,episodle,when it is a problem,take a pill.I have been living w/CIDP since 2003.As b/4,had IVIG ,then Cytoxan chemo. If you have GBS it will go away,if CIDP,it will not.Each case is different,depends on your individual case.
How were you diagnosed??
uncomfortably numb said:
I am so sorry that this is causing you so much stress. Try to relax a little if you can, I do understand how you feel.
I have had IVIG for close to a year now and will not be taking any more, I suppose. My side effects are just too many and it seems that the benefits are beginning to wane. However, for the benefits that I did get, it seems that it took about five days or so. How many treatments did you take?
opirty said:
Gabapentin 300mg as needed(generic Neurontin) .I have had no adverse effects,Pain is always there,episodle,when it is a problem,take a pill.I have been living w/CIDP since 2003.As b/4,had IVIG ,then Cytoxan chemo. If you have GBS it will go away,if CIDP,it will not.Each case is different,depends on your individual case.
How were you diagnosed??
Doggymama,
You ask a question that is difficult for me to answer since I have never gotten back to "normal". After 19 months of IVIG I would say that I now have no peaks and valleys. Every day is about the same as long as I don't over do it. The effects though begin to go away beginning in the fourth or fifth week. I tried to stretch out the time between the IVs but found that 6 weeks was too long. I cannot tell a difference between 3 and 4 week intervals so I am sticking with 4 weeks for now. I do not get a big boost right after my IV.
Unfortunately I didn’t experience anything from IVIG. I tried it of five treatments in one week, I tried it every other week, I tried it once a week plus my doc added a IV steroid with it and sadly I didnt experience any benefits from it. Don’t be discouraged though because of my reaction to this treatment, I believe every person is different and how they respond.