AnonymousDecember 22, 2008 at 1:19 am
Hello everyone. I am fairly new to this post, though I visited a few years ago. I have been receiving IVIG for 5 years. At different points it has been once every other week, 3 times a month, or every week. It has been every week for over a half year now. Does anyone receive it as often as I do? Of course I am so grateful for the IVIG and the aggressiveness my doctor has given my case. At the same time, I am hopeful to get less of this at some point. I am very concerned about the steroids given too. It gets discouraging!
Merry Christmas to everyone. Thank you for reading my message.
AnonymousDecember 22, 2008 at 6:04 am
I just started on this weekly IVIg schedule, it’s my preference as I felt like I was getting too much at once. So far so good. I have some steroids around here somewhere but I don’t take them unless I feel like I’m going downhill too quickly to wait for IVIg. They make me feel weak… and crabby. Have you talked to your doctor about cutting down on the steroids?
Have a happy day,
P.S. My post on New Treatment Protocol is on this subject, among other retarded things.
AnonymousDecember 23, 2008 at 9:39 am
My daughter used to get IVIG 2-3 times a week & she was 4-5 years old at the time. She received 20 grams at every infusion.
She was up to once every 3 weeks, we tried to stretch her to every 4 & she had a “setback”. So we started her off with another loading dose (110 grams over 4 days), put her on weekly IVIG’s again for a month. We currently just finished up 6 weeks of IVIG’s every 2 weeks.
How much IVIG do you get? And what is the steroid dosage? Is it oral or infused steroids?
If you get oral steroids & are concerned you can talk with your dr about switching you to Solumedrol, which is an infused steroids. People report a better tolerance to it with fewer side effects.
My daughter’s nurse usually recommends weaning off of the steroids first (as they are not good for long term use) and staying with the IVIG. Once you are stable with the IVIG alone then you can think about stretching out your IVIG treatments.
AnonymousJanuary 10, 2009 at 4:10 am
Yep there are a few of us arond – having weekly ivig. over the last 18 mths i too have been mostly having twice weekly ivig. For the last 9 weeks now i seem to have successfully managed to remain stable on once weekly ivig (yehaa!!) Am also on iv pulse steriods weekly and weekly immunosuppressants. Is hard doing twice weekly ivig but is great when you can cut it back, am not a fan of the needles either and veins are definately not the best yet i put my head in the sand etc whenever portacaths are mentioned!!!!. Have just had two weeks camping with my young family and my neuro arranged for me to visit the closest hospital to continue with the weekly treatments. Am hoping for greatness this year and plan to reduce the pulse steriods or the ivig early feb when i see my neuro again. All good things take time huh.
All the best and keep us posted.
AnonymousJanuary 10, 2009 at 7:03 am
Hi John! I was getting ready to mention the steroids but others mentioned it already. Are you not seeing any improvements with the IVIG’s? But then I am thinking maybe the steroids too might be causing problems. I think I would talk to the doctor and see what he thinks too. I know this is frustrating for you and the others in here. I have alot of scar tissue in one arm from being stuck so much with IV’s and I can imagine having to have this done weekly how the arms would get with bruising and soreness. Unless you have a Port. But it’s a pleasure meeting you in here and I do hope you will get better soon! Hugs
January 10, 2009 at 3:40 pm
I’m not on weekly IVIG (every three weeks), but prior to starting Gamunex last month I was getting PE weekly for almost a year. Much larger needles used for PE. One of the PE nurses told me about 5 years ago that I could minimize scar tissue at the stick site if I did two things: first, put ice packs at the needle site when you get home or right after the infusion and do it several times before you go to bed that night. Second, after 24 hours, rub the site with vitamine E cream every night before bed. I have very minimal scar tissue on either arm. Also make sure you are very well hydrated at least 1-2 days before the infusion. This makes the veins “pop up” and easier for the nurses to find and stick.
After about 150 or so PE’s I thought, why can’t I get something to numb the iv site so I don’t feel the stick? (yes, I know I’m slow on this one) I got my doctor to prescribe Lidocaine-Prilocaine cream. I put a gob where the iv is going to be and cover it with a large band-aid about an hour before the procedue and feel nothing.
Just something to think about. Good luck.
AnonymousJanuary 16, 2009 at 1:39 am
I have recieved IVIG treatments for the last 2 1/2 years. For the first year I recieved them every week. For the following 6 months I recieved them bi-weekly, and for the past year I have been on the every three week schedule.
My doctor is slowly reducing my treatments after I have been stable and haven’t had any decrease in weakness or fatigue level over what we both feel is a comfortable amount of time. This IVIG regimen and the combination of immunosupressants seem to control my CIDP the best (it took us 3 years to figure this out).
Instead of steroids, I take an immunosuppressant daily called Imuran. I tried the steroids for 2 years and they did not work well enough to outweigh the side effects, I absolutely hated being on them. The immunosupressants work much better for me and I have no physical side effects from them at all!
Good Luck & Take Care,
AnonymousMarch 15, 2009 at 3:57 am
Hi John…For over a year now, I’ve been getting 90 grams of IVIG every thursday. In order to reduce side effects, it is given over 6+ hours. On Fridays I also get plasmapheresis. My doctor discontinued steroids, cellcept, imuran, etc. as she concluded that if I required weekly IVIG & plasmapheresis, those other meds were not providing any benefit. I do take coumadin to ensure I don’t get blood clots. Overall, I haven’t had any problems with this treatment regime & I’ve gone from being paralyzed from the throat down, to being able to function pretty well. Even though these treatments eat up two days a week, IVIG & pheresis are a Godsend to me.
If you don’t already have a port, I would recommend you get one if you are to continue receiving IVIG over a long period. It saves the veins in your hands/arms.
Good luck with the IVIG!
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