Ivig treatment

    • Anonymous
      August 30, 2008 at 11:50 am

      I saw my doctor on Thursday; I am going to start treatment the week of the 8th. My neurologist prescribed 2grams/kilogram over 3 days. My GP thinks it is suppose to be divided into 3 days (waiting to hear from the neurologist).From what I have read with pre-meds it is doable for me.
      I do however have a problem with the liquid intake. I am in a wheelchair most of the time; I do have good days where I can get up off the toilet, but bad days where I need help. I need arm support and lifting support (hubby). I will be doing the treatment in the daycare center as a out patient, so that means I have to go down 14 steps(on my butt) and struggle going up with help for my legs. I am still not able to get up off the floor by myself, so I need to crawl my way to the lowest chair in the house. This will be 3 days in a row. When I do go out for 1 day, it takes so much out of me. I am wondering if this treatment has been fatiguing for anyone and if there has been a bladder/bowel problem with it?
      I have asked my dr. what I can do for my bladder issues, but he is reluctent on giving me meds as it may have to do with what is going on with me as it may be muscle problems.

      Any advice would be great.


    • August 30, 2008 at 2:16 pm

      Sorry you are going through so much. Don’t know if it is possible insurance wise, but could you look into home health? We love our nurse and it allows my 11 y/o to be more relaxed and comfortable, physically and mentally. From the sounds of your condition, I cannot even imagine the energy it would take to go down 14 stairs on your butt, that coupled with the obvious safetey risk to you and the facility, could your doc possibly write the insurance to explain the situation to push for home health(provided insurance is the issue) If no other options are available and outpatient is the only way, would you be open to a cath? It may be uncomfortable, but it might be safer and easier for you.
      About the fluids, yes they are important, but honestly, sometimes my son fights me on the fluids, even since our headaches and ivig reactions have subsided. Some times I would say honestly he only is consuming 100 oz. a day. Not the best info I am telling you but honest. Fluids ARE the best way, but I am nervous about all those stairs on your butt.
      Make sure the flo rate is slow for the first session, typically, the first session is over 3-5 days, most times they go with the 5 days. Each doc is different. If ypu are small in stature, perhaps you do not need much ivig and they are able to do it over 3 days. Also, my momadvice would be besides the fluids, take the premeds around the clock, even after you leave the facility. The full 24 hrs. We even go 3 days post. That is us, just us, probably the most important thing you can learn from this site is everyone is different, from levels of pain, amount of medicine, type of medicine, frequency etc. So what we need to do might not be what you need. We have had to be on the side of overkill with the pre meds because he would get the aseptic meningitis reaction every time. The good news is for the last two months, he has been spared the rection by about 60%. So…. it does get better, you will feel better and evnetually once you figure out what treatment plan works for you hopefully you can one day spend some time out of the wheel chair. We will pray for you and pm me if you would like to talk. Best wishes and good thoughts sent your way.
      Dawn Kevies mom

    • Anonymous
      August 30, 2008 at 3:14 pm

      I get IVIg every 3 weeks. I do drink alot of water & iced tea. I start benadryl 50mg. & Tylenol 500mg. every 6 hrs. 24 hrs. before tx. I con’t these meds for 3 days post infusion. I only get the IVIg one day every 3 wks. When I received 5 days of tx. I got very very very ill, all the meningitis symptoms. Ended up in hospital every time. When I get infusion they infuse it very slowly usually at least 6 hrs.
      Hope all goes well for you & Good Luck.

    • Anonymous
      September 11, 2008 at 12:32 pm

      well i finished my treatment…I had 2g/kg in 3 days. The first day went well, the 2nd day got a headache, yesterday was not good my haedache worsened my whole body ached and I had troubles walking. I couldn’t get out of the car I hurt so bad and slept for 3 hours.I still have the bodyaches and headache. How long does this last?

      feeling crappy,

    • Anonymous
      September 11, 2008 at 2:32 pm

      i’m so sorry you’re feeling so bad. when i had my ivig, i had it every other day for five days per month. it’s now going on my seven year anniversary and i am on permanent disability and still have some bladder problems, fatigue, etc. i just wear, what i call my “big girl” pads. i know too much info., but it helps me when i just can’t get to the bathroom in time. it also helps when i sneeze (and pee), cough (and pee), laugh (and pee), etc. i know this is so hard for you, but in time, you will adjust with whatever you get back or not get back. you are in my prayers and please keep us posted on your recovery.

    • Anonymous
      September 11, 2008 at 2:56 pm

      I just finished my IVIG a couple of hours ago and usually I feel better by the next day, or the day after. Drink as much as you can and take any pre meds that were ordered like Advil, etc. And just take it easy. It does go away:)

Ivig Treatment

    • Anonymous
      December 20, 2007 at 6:05 pm

      Hi everyone I got the call today about my IVIG treatment. She ordered 5 days of it. But she had told me she was ordering 3 days of it last time I saw her.
      I am getting it done Jan 21-22-23-24-25. Out of town so I will book a room at a nonprofit motel for people who need the hospital for themselves or a love one.

      My last NCV test showed improvements. But I am still having problems with my legs and the other day I was so weak in the legs I was ready to leave work. But I was given a big piece of foam to stand on to help take the pressure off my legs and that did help some. I work in a factory and stand on cement floors. I also had weakness in my arms that day and I couldn’t go bowling.

      I had left a message with my DR’s office at the Hospital and she called me back last night. I told the problems I was having with my legs and if it was ok to take OTC muscle relaxant with my other pain medication. She said yes. My pharmacist told me to call the DR because she thought I shouldn’t buy them.
      My Neuro asked me if I felt I was getting worse I told her my legs hurt a bit more then when I last saw her about 4 weeks ago and that the pain from my 2005 nerve biopsy hurts more lately. I also told her I don’t think it’s all CIDP related. I feel its something else going on.
      She wants me to keep track of the days that my body is giving me trouble on a calender. I will use a note book instead.
      I was wondering the other day if I was having residual or not.
      Well I don’t mind 5 days instead of 3. Better chance that I will improve more.
      It doesn’t cost me anything except if I take time off work without using a weeks vacation and my room at Rotel which is $30. a night with TV and Parking and an 8 minute walk to a free shuttle bus service to the hospital I get my IVIG.


    • Anonymous
      December 21, 2007 at 10:02 pm

      I ask, because some relaxants might not be compatable with some of the pre-meds. Usually, they consist of Tylenol, Benedryl, or combos of these, and at times some steroids to avoid ‘reactions’. Adding the relaxants into the mix could complicate things should that happen – tho it’s probably 98% unlikely. I suggest that you talk to your doc and explain your concerns, or do the same to the IV nurses [who should be very experienced in this sort of thing].

      My only other prep suggestion is to hydrate like crazy! To the point where you can almost hear yourself sloshing and going to the ‘powder room’ every 20 minutes. It serves two purposes, the first: makes it easier to get a catheter into you as your veins are ‘popping’, and second: lessens any side effects you might have. I’d also suggest eating light for the day before starting infusions…I prefer fruits and light carbs myself. After my first day of infusing I usually crave proteins! Sometimes that first infusion can cause nausea as a side effect, so.. eating lite really avoids the issue.

      Congratulations! Get it and then GET BETTER.

    • Anonymous
      December 22, 2007 at 7:59 am

      Hi Joan This past summer I had the Tylenol and benedryl on the first day and the other days just the Tylenol. I found if the infusion was over 140 then I had problems. Also the lock they had in my arm was giving me troubles by the end of the 3rd day because of the tape they had on top to keep it in place. It wasn’t breathable tape and that area got very itchy by the end of the 3rd day.

      I usually ask for a big glass of apple juice to take my Tylenol with and anything I drink usually goes right through me so going to bathroom is not a problem when I am there. Also the muscle relaxant I only take it at night if I need it. Last night I didn’t need it. So most like by the time I get my infusion I won’t be working for a week so I won’t need the muscle relaxant.

      Thanks Again


    • Anonymous
      December 24, 2007 at 9:08 am

      Good luck witrh this round of IViG. I reacted to it when I tried several years ago, and only responde to palsmapherisos. I do recall the Benadryl helping durin gthe IViG. 🙂

    • Anonymous
      December 24, 2007 at 9:24 am

      Thanks Randy. 🙂


Ivig Treatment

    • Anonymous
      April 17, 2007 at 9:00 am

      Hi All,
      I have only posted on the main forum one time but have been a constant reader for the last few weeks. My brother will begin his 1st treatment this am for what they believe to be CIDP or a variant MMN. He is getting weaker by the day and we are so concern and hopeful that this will help. I know this is a loving and caring site and he would appreciate your prayers as he begins this treatment. I wish you all health and prayers.


    • Anonymous
      April 17, 2007 at 10:17 am

      Hi Pam, he is in my prayers. I hope he gets the positive results from his IVIG that many of us have. Please keep us posted.


    • Anonymous
      April 17, 2007 at 10:52 am

      Hi Pam and Welcome,
      Your brother is in my prayers as well as the family. I hope he finds his IVIG treatment is his “miracle juice”, as I do. Good luck!!

    • Anonymous
      April 17, 2007 at 11:11 am

      I find that IVIG works well for me it will take a little while to see improvement so do not expect to see effects right away. Do not give up. Keep the faith and remember that we are all here for you and your brother. Keeping the spirits high and enjoying life no matter how hard it is. That is some thing that helps keep me from feeling so bad. I read a inspirational story or quote every day and that has helped keep me healthier and happier than before. Take care and Good Luck!!!!

    • Anonymous
      April 17, 2007 at 12:19 pm

      Pam and Joe,

      I’m the mother of a 3 year old with cidp so I can only speak about the caregivers side.

      I guess we love ivig, we have seen positive results but it seems, in Dell’s case, we need to take other drugs along with ivig.

      I wish ya’ll the best of luck and please send another post about how he’s doing. Make sure they pre-medicate him.

      Love, Lori

    • Anonymous
      April 17, 2007 at 1:25 pm

      Hi Pam,

      Tell Joe that I am keeping him in my prayers. Hopefully the IVIG will make a difference for him.