How long can i continue getting IVig infusions?

General General CIDP Discussion
1

I have been getting IVig infusions for the past 8 months for CIDP. My local neuro says I need to stop and take a drug holiday as I should only take IVIg for 6 months and then stop. I don't really want to stop as i think it is helping to keep me stabilized. How long should or can a person continue gettingthese infusions?

2

Hi Lou. I get the highest dose of IVIG every 21 days for the past 4 years and still counting because it's still working. I declined both times when we tried to stop or stretch the infusions. It took many months to regain what was lost when we tried. I know of others on it much longer than myself.

3

Hi Lou,

Are you still having problems even with IVIG or are you normal? If you are normal your Doctor may want to see if you still need it you may be one of the lucky ones that are in remission and will stay that way even without IVIG. I would make sure that if you start having problems again that you can get back on IVIG without any problems and quickly and if that is the case I would go ahead and do it.

4

thanks jast…i feel pretty good most of the time…i have drop foot in both feet…i feel good for the first 3 weeks after my ivig…but durimg the fourth week I start feeling weaker and slower esp. climbing stairs.

5

thanx mabes…i am going to meet with my neuro spec at the cleve clinic soon…i will bounce all of tbese ideas off him…so glad to hear ur infusions are stull helping u

6

Sounds like rubbish - but read on. I am given a Baxter product called Kiovig Link here for the product information sheet. At no time have my neurologist or haematologist ever suggested I will ever stop getting it and the supplier is happy to continue supply (and that is a big call). I am now at 12 months at 1 per 4weeks and everyone is happy to go on.

Nowhere is there any indication in the information sheet that I can find that says you need to "take a drug holiday".

However - reading between the lines there are possibilities (you need to look up the information for they product you get):

  • You have some other condition where it might conflict?
  • They think you are one of the lucky ones getting a cure (small percentage) and they want to test that? In which case any change for the worse and get back on quickly.
  • Something someone else could suggest?
7

thanx mdolich, glad to hear ur infusions are still working for u…i too wear AFO,s and.orthotics…they help me a lot with balance & tripping…i wear Ottobach’s…they aremade of polycarbon steel and r very light weight

8

thanks, Michael…i am glad to get ur reply…i have been searching the web for any info saying to limit use of ivig…i couldn’t find that either

9

I have been on IVIG (Gammagard)for over 6 years, having more than 100 infusions of 150 grams. The one time my doc extended my time between infusions from 3 to 5 weeks I went seriously downhill, going from able to walk reasonably well to needing a walker to navigate. When the doc saw me at the end of this period he suggested a wheel chair to get back to my wife’s car. (I could not drive at that point.) Two years later I am still not back to where I was before this “experiment” I realize we are all different and I have minimal side effects from the infusions but I echo some of the sentiments expressed by others on this site. Monitor conditions closely and resume treatments ASAP when things start to deteriorate. Good luck.

10

Thanx, roserider…all of this info helps so much…the best info I get is from others in the same boat!

11

I have had to be away on my "routine" 4 week treatment. I got a treatment one week early and then a 5 week gap. Might be "stretching" a bit but the half life of my product is 22 days so with that 3 week top-up it appeared to work OK - don't think I went downhill. About to do it again soon.

roserider said:

I have been on IVIG (Gammagard)for over 6 years, having more than 100 infusions of 150 grams. The one time my doc extended my time between infusions from 3 to 5 weeks I went seriously downhill, going from able to walk reasonably well to needing a walker to navigate. When the doc saw me at the end of this period he suggested a wheel chair to get back to my wife's car. (I could not drive at that point.) Two years later I am still not back to where I was before this "experiment" I realize we are all different and I have minimal side effects from the infusions but I echo some of the sentiments expressed by others on this site. Monitor conditions closely and resume treatments ASAP when things start to deteriorate. Good luck.
12

thanks, Michael…those 4 weeks go by fast, don’t they. My next one…#9…is on Minday

13

4 (or even 5) weeks is too short for some holidays!!!!

Lou said:

thanks, Michael...those 4 weeks go by fast, don't they. My next one...#9...is on Minday
14

Hi Michael

I also get IVIG every 4th week, but I never knew why there is a low period the 3rd to 4th week, or that a top up was possible. I thought it was me. So when you say 22 day period, do you mean "shelf life"?

Regards

Happy

15

No - it is "half life" - like radiation decay. At 22 days the effect is half as effective as at the start so at 22 days you still have some left from the treatment before (and a little from the one even before that - and so on).