IVIG dosage regime question
AnonymousSeptember 13, 2009 at 1:15 pm
I am wondering if there is any new literature out there about frequency of IVIG dosage regime. It seems that typically people receive IVIG every three or four weeks. I am wondering why it wouldn’t be given in two doses every two weeks? i.e. say you get 100G. a month why wouldn’t they give 50G. every two weeks. One would think it would be kept at better therapeutic levels to do that. Hubby gets 120 G. monthy (over two days) and he notices that by the end of week 3 he loses strength in his hand and leg. I know it seems apparent that he may need a larger dose monthly, but I think he is lucky to get what he gets due to cost factors. So I am wondering if dividing the dose might into two given twice a month might be a suggestion to put forward to the neurologist? Any info. and opinions welcomed.
AnonymousSeptember 13, 2009 at 2:05 pm
Actually many neurologists do break up the treatments the way you are suggesting. I think it is a good idea to bring it up with your husband’s neuro & see what he says.
I personally believe a loading dose followed by consistent maintenance levels provides the best environment for ones body to heal.
I would think your husband is feeling starting to go downhill at week 3 he either needs a larger dose each month or he needs his IVIG more often. If it were me I would ask for the infusions bi-weekly at the same amount. Then if that doesn’t work I would ask for them bi-weekly but increase the dose.
If he is going downhill it means that there are more bad CIDP antibodies in his body then the good IVIG antibodies. When this happens those bad antibodies can start their attack all over again. In my opinion, he’ll never get the most out of his IVIG treatments.
Some people do just fine with a once a month dose & others need it more frequently. It just further proves our saying that treating CIDP is an art form.
Good luck & let us know what the dr says.
September 13, 2009 at 7:13 pm
Just recently, I asked our doc if we could infuse every two weeks to help aleviate Kevin’s severe reactions he has always had. I figured breaking it up could only help and it did. Additionally, I feel that since ivig has a half life and amount does not necessarily play a role in that, why not stay ahead of that 3 week half life. In my uneducated opinion, I would assume that since the literature suggests frequency is more important than amount, giving at two weeks would allow you to keep the titers up. Just a mom thought. I am so glad I asked to switch, things should be easier for Kevin in school this year since he will not have to miss four days for treatment and 3 more for sickness. Actually, this month will be the last 2 days every two weeks, next month we will do one day every 2 weeks. We have weaned down from 125g monthly over 4 days to 70g monthly over 2 2 week sessions @ 35g a day. I hope things stay well. not sure how I will ask for the next wean, stretch it to 35g every three weeks, or decrease the amount and hold at 2 weeks???? Our ultimate goal is to get to no ivig and see where we are, medicinal remission or real one? Good luck in your decision.
Dawn Kevies mom
AnonymousSeptember 14, 2009 at 4:58 pm
numbers would tell all? But, once you get settled into a ‘routine’? And, they tell by your #’s that things are ‘stabilized’, not much else happens, by way of testing. Guess new issues, or additional ‘justification’ by the docs has to be done to warrant more testing. HUMMM…
It’s sort of a ‘rock the boat’ issue? By which, complaining just mite mean that the IG isn’t working…ergo no more IG? It’d be best to keep ‘notes’ on how you felt, rite after your first infusions….then feeling now, a time later. Documentation is better proof than anything in my humble opinion. It’s possible that subsequent blood tests could be taken for week 1,2, or 3 to determine how the immune system is acting/reacting to the IG and other factors.
It’s a hard game to play with any doctor, and by ‘game’ I mean, how he will take your input and deal with it. Some docs are good for the IG, others are very, very stingy about doling it out. It shouldn’t be a ‘game’ per-se, but at times you get the neuro on a very ‘bad’ day and you can suffer for the inattention [such as losing a patient or the like] .. You have to learn to read your neuro as well, if not better than he can read you!
I’ve always found that honesty, well-documented, works the best. You always get caught in lies, so never exaggerate nor understate – just the facts works.
I hope this helps even a little.
AnonymousSeptember 14, 2009 at 10:35 pm
Hubby has never had any blood tests in the two years of being on IVIG that relate to how he is responding to the IVIG. He gets his renal function checked every 3 months, but that is it. He gets nerve conductions yearly now. What test would demonstate how the immune system is working?
September 15, 2009 at 9:02 am
You could have his titers of ig (other acronyms too I get mixed up with which I or G is capitalized). I have hard copies of abstracts that I could dig out and fax to you pm me if you would like that.
September 15, 2009 at 9:04 am
However, checking the titers would not measure cidp so to speak it would just tell you what the Ig levels are giving you some measure of antibodies/autoantibodies.
AnonymousSeptember 15, 2009 at 10:04 am
I think it might be wise to have his IG titers checked before the infusion. Just have the nurse draw blood before he is infused.
Then, I personally, would have them checked each week until the next infusion.
Keep a journal of how he feels everyday. If you start to notice he’s not feeling well in week 2 then you’ll know, by the blood test results, what his IG titer needs to stay at. Then you can plan his infusion accordingly.
We did this with Emily. We found that she did best when her IG levels were around 1500 (which I’m told is really high). I’m sure they are a lot less now but we haven’t checked them in awhile.
Doing this helped because if she started to have pain we could run blood test to what the titers were. If they were still around 1500 we knew it wasn’t a relapse, it was just pain.
It also helped to know when she needed a boost of IVIG when she was sick. We could run the blood test, see what her titers were & if they were low then we knew she needed IVIG.
It’s just another tool that dr’s can use to gauge the IVIG. Emily’s dr never even considered it until I brought it up to him. I got the idea from people with immune deficiencies needing their IG levels checked.
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