IVIG not working this time
AnonymousMarch 24, 2008 at 3:55 pm
I’m a little frustrated and getting depressed here but I switched from 4 days once a month to two days every two weeks. The last time and the time before, I had improvement for about a week or so. I had my two days last week and nothing happened this time. My typing is still bad, walking, swallowing, etc. Are there times that it just doesn’t work? Or do I need the whole loading dose of 4 days to be effective? I thought about that since I usually didn’t get improvement until the 3rd day or so. I also started Cellcept, and think I may already be getting a cold which is not good. Anyone have any advice or suggestions? I go back to the neuro on Friday this week. Thank you…..
AnonymousMarch 24, 2008 at 4:29 pm
If you are already in a decline when you get the 2 day dose it probably won’t help. At least that was the case for Emily.
If Emily was in a decline she needed the full 5 day loading dose (we usually saw improvement after 3-4 days) and then she could go on the maintenance schedule.
If you aren’t seeing improvement after the 2 days & you are had a decline then talk to your dr about doing another loading dose then the maintenance dose every 2 weeks over 2 days.
I know how frustrating it can be, believe me. I felt like we took 1 step forward & 2-3 steps back for the 1st year of this illness. It gets better once you can figure out the right schedule for you.
AnonymousMarch 24, 2008 at 6:46 pm
Gab you and I were dx at about the same time with the CIDP, Nov. 2007 and recently it was confirmed that I’ve the Anti-Mag, “IgM” Spike and involvement.
I’ve had five months of IVIG, with CellCept 2000 mg a day, Prednisone started at 80 mg a day, [now I atlernate 60 mg with 50 mg a day] and Arava 20 mg a day.
So far nothing has shown an improvement, MD felt it was preventing me from getting worse. In early March I started having new symptoms and went to MD today and he is going to start me on Plasmaphresis five treatments in seven days this week or next.
I only pray that I have a positive response to the Plasmaphresis.
We sound as if we have similar disabilities. From my toes to knees and from my hands to my elbows have the pain, pin, needles, and numbness. My feet are very weak, and my right arm is not functioning as it should.
I’m on a walker, can not stand except for seconds.
Know that I’ll be praying for you and hope your MD will discuss other treatment opitions with you.
Keep us posted.
AnonymousMarch 24, 2008 at 9:24 pm
Kelly, that is I guess how I feel now since I thought we were doing good getting some kind of treatment plan and that doesn’t seem to be working. I am in decline each time I get the IVIG because it only holds me for a week. And then I was waiting 3 more weeks until the next dose. I think he thought maybe switching to 2 days every 2 weeks would hold me.
Beth and Wanda, I really haven’t had any other blood testing, except liver function and my blood counts since starting Cellcept. When the IVIG works, it’s great and I improve, but it is shortlasting. I will have to look up POEMS since I don’t know what that is…
I had asked in a post a while back, but how much IVIG can you get? I emailed Kiwichick because I think she posted she gets it twice a week. But I hadn’t heard back. Thanks again guys.
AnonymousMarch 25, 2008 at 12:31 am
Hi there, i did get back to you didnt i??? Am still getting used to forums layout etc and finding my way around it. apologies if i didnt get back to you. see you are on line now so will keep this short and will add more later or pm you but basicially wanted to say
HANG IN THERE and ask for more ivig.
It is obvioulsy doing something for you as you do get imporvement even if is a little after day 3 – 4. i am always like that after a loading 5 day course although my last loading didnt do toooo much and then wee add other treatments ie methylpred and azathiaprine etc but kept up with the regular ivig (we were getting into desperation and total quadraplegic state by then), but as you know i think , i know have ivig maintanence mon and fri and am now running 1km. best i have been since struck with this 10mths ago.
trialled ivig for 6 wks for just once a week and deterioration set in again. back to twice weekly and am making great progress!!!!!!!!
will pm you soon but htink you have nothing to lose and possibly much to gain by trying more ivig.
hey there again, am back after doing the dinner round with kids etc and checking on other threads.
you say you emailed me gab11 but i have checked my box and I havent received any email from you.
i did post a reply to you on your previous thread re how much ivig you can get etc, and you did respond to that reply. Am not sure if that is what you are refering to in your abouve post?
Am wishing you shortcuts in finding out the ‘correct potion’ you need to start getting your life back but unfortunately thru my experience at least, i know it can be a long crappy ride!.
stay strong and give it all a good shot.
and if having really bad day seek help, but take solace in fact you never have to look far to see others worse off?????
AnonymousMarch 25, 2008 at 7:59 am
I didn’t get a message but I am wondering if my mailbox was full or something. But thank you for responding here! I knew you got it two days a week so that would be about double what I am getting now. I think my neuro will try almost anything I ask. And maybe there are times where it just isn’t as effective? I am not sure. I think the hard part is knowing how improved I could be, and that I am not. The roller coaster is a little frustrating. And not understanding the disease completely is my downfall too. Give me another year or so and I should be the expert:)thank you guys!
AnonymousMarch 25, 2008 at 11:10 am
Emily had it 2-3 times a week before too. She’s a kid so it is a bit different.
If your neuro agrees to that then just make sure that you are getting a CBC done every month. That will show first if your blood is getting to thick. There is concern of stroke with such high frequency of IVIG, but it minimal & can usually be detected through a CBC.
If your IVIG is only holding for a week then you need treatment BEFORE it gives up. So if you can go 7 days before you notice the decline starting then you should get it every 5 days. After awhile of doing this you will probably be able to stretch out the time between treatments – that’s what we’ve done for Emily.
Start it with a loading dose though – or it’s just not going to have the desired effect.
AnonymousMarch 25, 2008 at 12:10 pm
Kelly, just so I understand what I am going to ask for, get a loading dose (which I get over 4 days) and then one day every 5 days or so (before I lose function again). Then when do you do the loading dose again or do you not have to do it again? I also got a really fierce phlebitis this time and the last. I don’t have a port but maybe just a day dose and not two in a row would be OK. I am already on monthly lab work too, lord knows I don’t need a stroke on top of this:)
AnonymousMarch 25, 2008 at 12:30 pm
Yes, you ask for the loading dose. Then you ask to get 1 dose of IVIG every 5 days.
If you start your loading dose on a Tuesday & finish on Friday then you ask for your 1st weekly maintenance dose to be on Wednesday of the following week.
The idea is that if you are starting to feel the decline at day 7 post infusion then you want to get a little boost of IVIG in you before that decline starts.
You shouldn’t need another loading dose as long as you can maintain at every 5 days. The loading dose is to give you a big boost before starting a maintenance schedule. Once you can maintain for awhile then your body can start to heal.
Once you get your schedule figured out you should look into ports. It’s been a lifesaver for Emily.
AnonymousMarch 25, 2008 at 12:31 pm
Regrettably, on rare occasions what works one day won’t work the next–I’m living proof, but in my case there may be something else going on. Fight for full dosage, but also fight to ensure that it’s just the CIDP causing problems.
Are we having fun yet?
AnonymousMarch 25, 2008 at 2:08 pm
Thanks Kelly! I’ll propose this and see how that goes. I owe you big time if it works!
Deb, yes I am having so much fun I can’t stand myself:) I do believe it is CIDP, especially since I am so much improved with the IVIG, except this time. It is such a difference in strength, I just can’t explain via Internet. And everyone has watched me walk in the neuro office and I can barely waddle down the hall when I’m bad, and I almost had a normal stride after the last dose.
We’ll see what happens this week. I figured I would get an every two week dose and that would work and I could move on, but alas, my body has other plans for me:)
March 25, 2008 at 3:55 pm
I agree with everything that kelly said, except in stead of a maintenence dose once a week, I would get a loading dose. For example, if you currently get lets say 200 grams over the 4-5 days, I would get 50 once a week, as opposed to 25, which would be a maint. dose. I think since you know ivig does work, but just for a very short period, I would stick with the loading dose amounts as your weakly schedule. Obviously maint. is not working for you since you are now on cell cept. The ivig may also help with the cold situation as well? Good luck.
March 25, 2008 at 4:03 pm
WOW! I just re-read my post, I guess I really am tired. All the mispelled words! Sorry!
AnonymousMarch 25, 2008 at 5:36 pm
Hi Gab111, sounds like that is a good plan to try and get established. Go for getting yourself sorted with lots of improvement and then reduce back, and stretch treatments out. is definately pointless trying to settle for less and be struggling. you achieve nothing just slow general deterioration which sounds like what has happened in your recent events.
all the best
AnonymousMarch 26, 2008 at 2:57 pm
What Dawn means by getting a loading dose & what I mean by getting a maintenance dose are pretty much the same thing.
Let me explain because it’s confusing.
Emily’s maintenance dose is about 1 1/2 grams per kg (give or take some). Apparently the “normal” maintenance dose is 1 gram per kg.
Dawn & I both mean that you should ask the dr for 2 grams per kg for your every 5 day maintenance dose.
I hope THAT makes sense.
AnonymousMarch 27, 2008 at 3:10 pm
i went today and he wrote down and understood what you guys were saying. he said there is a physician at Mayo who uses this protocol. we are going to try one more week of two days in a row and see if maybe it was a bad batch or something. ALL of my strength was significantly decreased today by kilos. it’s so amazing because it is an accurate way to measure from visit to visit. Last time i was there, i was so good. So, again thanks for all of your input and we wil see what happens next time….
March 27, 2008 at 4:12 pm
Thank God the doc was receptive. Life is so much easier when the doc is reasonable. Regarding the kilo measurement and its importance in gauging progression or regression, I also found the grip test beneficial in guaging Kevin;s progress and at times regression. You also get a chart that says what a person your age should be gripping and it gives you a mean and mode. To me, it was so instrumental, to Kevin it was awesome seeing his progress, as well it was something tangible for him to see that ivig IS needed to maintain his strides!
I am confident that this doc is going to figure out EXACTLY what you need to get you back on track, be it every 5 days ivig, that in conjunction with cell cept, what ever it is, I feel he is on your side!
Dawn kevies mom
AnonymousMarch 28, 2008 at 8:44 am
yes it was the grip test i am talking about. there is a thing for the thumbs and then just the grip. i think the difference was like 10 kilos or something. my neuro is wonderful. i have a very good relationship with him and am hopeful we can put together something that works. he said the cellcept takes 3-6 months to work. I am coming up to my one year anniversary too which is kind of a milestone. but things could be worse and i am fortunate to be able to get treatment. thanks again!
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