Its Finally my time to get IVIG!

    • Anonymous
      December 30, 2008 at 2:57 pm

      I am so excited! ๐Ÿ˜€ My Doctor has ordered 3 treatments for me. One 5 day load and two followup treatments of 172gms each.
      I know this is not a picnic but I have waited and played the game for so long and now we are trying the real deal. I hope my body takes this well and it works. Insurance has cleared me for the whole year. The secretary couldn’t even believe it.

      Travelling to Philidelphia Friday when the bed comes available and staying until they get the 5 doses in. Debbie and Kelly are riding down with me and I have them up at the Crown Plaza in Downtown (8 blocks away) so they can be with me and also enjoy the city. My Sister Gina is with a Firm on Market street and will show my girls the ropes and assist getting them around and us out in turn.

      Now Just waiting for them to call with times on a bed. I have my bag packed, got my benadryl and everything you all have told me either in the bag or in my head. Movies, computer, MP3, camera, pills, snacks you name it.
      You’d think I was on my way to Hawaii or something. ๐Ÿ˜€ LOL

      2007 & 2008 havn’t been the best years of my life, except for getting to know and meet so many of you on this forum. And being drawn closer to God and my family here at home, I am hopeful 2009 will have promise for me and each and every one of you.
      Thanks everyone for your help and guidance on all of this. Happy New Year too! Tim

    • Anonymous
      December 30, 2008 at 3:19 pm

      Make your own notes on what all is done to you… until the benedryl kicks in? And then just keep up as best as you can.
      I truly, sincerely hope this helps!
      Don’t know about you? But to me? IVIG is better than Hawaii, most times.
      All the GOOD things that can happen, will happen for you!

    • Anonymous
      December 30, 2008 at 3:58 pm

      Great news for you, I hope this is the beginning of a better year for you in 2009.
      Happy New Year
      Best wishes and prayers

    • Anonymous
      December 30, 2008 at 5:27 pm

      AWESOME! Try not to make any judgements the first time around… you may get side effects but they may turn out to be minor compared with disease progression. Be prepared to feel icky but hope to feel just fine!

      Let us know how it goes, keeping my fingers crossed for you!


    • December 30, 2008 at 6:55 pm

      Great news. As Julie mentioned, the most important thing is to give it a chance, IF you get the side affects, remember, each time they get better. If it takes 2 or 3 treatments to feel supersonic so be it. As soon as you start,you will be stopping progression. I KNOW 2009 will so much better!!
      Good Luck, I will be thinking of you!
      Dawn Kevies mom

    • Anonymous
      December 30, 2008 at 8:30 pm

      One thing I noticed is that drinking plenty of water before hand wasn’t mentioned. [or maybe it was and I miss it] I see it mentioned in other posts and I always done it myself. That and the benedryl have kept the side effects down to the noise level. I hope you come out the same.

    • Anonymous
      December 30, 2008 at 9:33 pm

      Great news!!! Wishing you the very best (no/limited side effects and maximum results)!!!! Ready, set, GO!!!!

    • Anonymous
      December 30, 2008 at 9:36 pm

      ๐Ÿ™‚ Hi Tim:

      I hope the ivig works well for you and stops progression of any further damage.. I have had quite a bit of the stuff.. I found initially to have a little trouble adjusting (bodywise).. Benedryl, water, and coffee, and tomato juice for me have worked.. The last 6 months I’ve skipped the Benedryl, and just drink juices/water/coffee and rest as much as I can.. Keep us posted, Happy New Year.. Deano

    • Anonymous
      December 30, 2008 at 11:26 pm

      [FONT=”Century Gothic”][B][COLOR=”DarkOrchid”]Hi Tim…I was SUPER excited when i got my first round of IVIG…At the time I wasn’t aware of any side effects (hadn’t discovered this wonderful forum by that time). But Luckily, I didn’t feel any different when I got it. I felt slightly “yucky” but I really do believe that it was simply because I was stuck in a hospital room for 5 days! It’ll do that to you! GOOD LUCK! And Happy New year![/COLOR][/B][/FONT]

    • Anonymous
      December 30, 2008 at 11:29 pm

      Hooray for you Tim. I know you will feel sooo much better. Tell the girls to have fun and take lots of pictures. Before you know it you will be out doing so many things you will forget how crappy you felt before. ๐Ÿ˜€ Keep us posted and enjoy your time in hospital hawaii.

    • Anonymous
      December 31, 2008 at 9:08 am

      Hi Tim,

      Congratulations on reaching your IVIg goal. The stuff seems to work miracles for some folks. I hope and pray that you have positive results.

      I had to laugh when I read your list of preparations. You and I would get along just fine. ๐Ÿ™‚

      172 gms seems to be a huge daily maintenance daily dose. From your photos, I’m guessing your weight to be around 180 pounds. If I’m correct, by my calculations you’ll be receiving about 2 Gm/kg as a maintenance dose. Will that be administered over more than one day?

    • Anonymous
      December 31, 2008 at 11:39 am

      Great news. Here’s hoping you experience immediate results!

    • Anonymous
      December 31, 2008 at 12:36 pm


      I havent been on in a few days and this was the first thread that popped up.
      I am SO happy for you and it sounds like you have everything you need.
      Remember, if you start to get a headache, it’s very likely that they are pumping too fast.

      Dont be surprised either when you see that IVIG is clear. :p

      I just had my two day in a row treatment with the PROPER DOSE ! and I have to tell you- I am able to walk up my stairs at home without holding on to the railing !!!!!!!! That, my friend, is HUGE for me.

      I, too, think the last couple of years have really been tough. I’ve gone thru two losses, one being my Mom. That’s been the worst thing that’s ever happened or I guess the hardest I’ve ever dealt with. My Mom and I were so close. I, like, you, have been brought closer to my family and faith and to everyone here also. I really am looking forward to a new year and new opportunities for good things to come.

      I’ve been off work since the 23rd and not going back till the 5th, maybe 6th…I cant tell you how much I’ve enjoyed being home even tho I got so sick there for a bit.

      Best of luck with your IVIG. You’re gonna do great !!!!!!

      well wishes,

    • Anonymous
      December 31, 2008 at 2:16 pm

      Thanks for the positive support.

      I questioned the dosing yesterday. I am 190 lbs so the load is 35 gm per day for 5 days. and the total for the next two treatment cycles is 172 gm’s. So it is basically 3 loads in a row. That ought to fix my Wagon EH! IF not, UH OH!

      I plan on being hands locked head back with eyes to the Sky, the whole time.

      Happy Newyears to you all. Be Safe!

    • December 31, 2008 at 10:55 pm

      Hi Tim,
      So, were we right about all the stuff to bring or what!! Just think how board off your butt you would have been watching hospital cable!!! And the food YUK!!! We used to have other kids come in our room for movies and snacks!!! Great your daughter and wife are staying near. It’s a nice treat to keep them happy too!! About the dosing, is it going to be 172g over 2 days next time? Thats alot!!! Did you find out if you can do home health next time? This is a great way to start the New Year, STRONG!!
      Daqwn Kevies mom

    • Anonymous
      January 1, 2009 at 3:31 am

      (Hey Dawn, it sounds like 172g over 5 days… or about 35g/day, repeated over the next two treatment cycles of 5 days – not sure how many weeks apart the cycles are…)

      Tim, my maintenance dose is 40g/day and I weigh 50lbs less than you so 35g/day is not a super huge amount for the initial trial – they usually try to do 2g/kg the first time around and you’re getting less than that. You are probably getting enough to be able to tell if it helps but don’t panic and think they are stuffing you full – my initial dose two years ago at 120lbs was 60g/day for 5 days.

      Just be grateful you are relatively healthy going into the hospital for five days – don’t wander about, hospitals are notorious for getting people sick. I’m not being smart… it’s true!

      Good luck and Happy New Year!


    • Anonymous
      January 1, 2009 at 12:03 pm

      Julie, at a body weight of 190 lbs, 172 gms over a 5 day period is almost exactly 2 gm/kg (190 lbs divided by 2.2 equals 86.4 kg. 172 gm divided by 86.4 kg equals 1.99 gm/kg).

      If you weighed 120 lbs and you received 60 gms per day for 5 days, your loading dose was 5.5 gm/kg (120 lbs divided by 2.2 equals 54.54 kg. 300 gms total divided by 54.54 kg equals 5.5 gm/kg), which is a HUGE amount.

    • January 1, 2009 at 2:33 pm

      Hey guys,
      Happy New Year. I was asking Tim about his future doses, we had spoken before he went in the hospital and there was a question as to if it was over two days or two sessions of five days. He was going to ask his doc while in the hospital. Of course 35g per day is safe, Kevie gets 30 per day. Hope things are going well Tim!!
      Dawn Kevies mom

    • Anonymous
      January 1, 2009 at 4:59 pm

      Tim – Congratulations! I was just telling a friend that I really need to hear some good news from SOMEONE, I’m so tired of all the depressing news, then I signed on and saw your post! YIPPPEEE!!!

      by the way, I get 65 to 70 in a single day, so you can get it in bigger doses. I am lucky I have no problems with it, minimal side effects. So they can give it in bulk if they want.

      Happy New Year! Heres to 2009!


    • Anonymous
      January 1, 2009 at 7:05 pm

      [QUOTE=Rod in Louisiana]Julie, at a body weight of 190 lbs, 172 gms over a 5 day period is almost exactly 2 gm/kg (190 lbs divided by 2.2 equals 86.4 kg. 172 gm divided by 86.4 kg equals 1.99 gm/kg).

      If you weighed 120 lbs and you received 60 gms per day for 5 days, your loading dose was 5.5 gm/kg (120 lbs divided by 2.2 equals 54.54 kg. 300 gms total divided by 54.54 kg equals 5.5 gm/kg), which is a HUGE amount.[/QUOTE]

      Yeah, you are right, did I mention I stink at math? It gives me the shivers… anyway, sorry for the misinformation – it’s good you are getting the right dose – but wow, I must have scared the crap out of my doctor to give me that much back then! ๐Ÿ˜€ I only get 40g now…

    • Anonymous
      January 3, 2009 at 5:51 pm

      Two days down and 80 grams in
      No problems yet

    • Anonymous
      January 3, 2009 at 6:17 pm

      Fantastic! SO SO happy for you! How’s the food? :p

    • Anonymous
      January 3, 2009 at 7:36 pm

      Food is yuck if they even get the order right. Nurses are good but rooms are
      Old and shot. Thank God that my sister and wife have been bringing food up to me or
      I would have issue with the food.

      They have been giving me panglobulin for the brand of IVIG. I didn’t know it was clear.
      When they say blood product you think red right.

      Kind of doing things on a weird shedule. started Friday night at like 9 til 4 am 40 grams, then
      saturday at 12pm 40 grams til 7PM, then sunday start at 8 am til 1pm 30 grams, then sunday
      again at 5 PM 30 grams til probably 10pm. finish Monday ahead of schedule at 1pm with a 30 gram
      dose. I guess they are packing it in. went from 5 day down to 3. I got a slight headache after my 3rd dose. getting ready for another bottle in 20 minutes. The doctor said my hands have gotten a
      bit stronger already. I am skipping my pain pill today to see if I notice a pain difference.
      The ramp up at this hospital is 25 1hr/ 50 1hr/ then 75 for the remainder. Also they have been giving me heparin twice daily as a thinner.

      Both second and third treatment cycles to be 172g. unsure of how many days. the doc said I should be able to do it in 2 days. He said if your relatively young and healthy, they up the amount you can get. I know thats alot, I am going to ask for 3 days. Even that alot.
      Well, the dude is coming in with the go juice. see ya-tim

    • Anonymous
      January 6, 2009 at 7:15 am

      ๐Ÿ™‚ Wow Wee,:)
      What a process that is. I just got home last night. On the day of last teatment, I did wake up with mild flu like symptoms and a huge headache.
      Took some Perk’s for pain and a Decon and that beat it down a few notches.

      My headache felt exactly like my springtime allergy reaction when the tree pollen hits. For me it started as a sinus headache and pressure behind the eyes, then escalated to a, don’t move my head situation. Its OK now.
      He said he will taylor the plan and frequency as we go, to avoid the symptoms. And that a different batch may produce different symptoms.

      Anyway, I had about 5 neuro’s some resident, some associates, and some in college come and examine me. They all said I am different than usual. My doctor is back onto CIDP because my knumbness is so prominent. They think I am Half MMN half CIDP.

      I had made noteworthy imporvement prior to leaving the hospital. Mostly in hand strength. The Dr. said it was a very sucessful treatment and people don’t usually respond so fast. He is predicting back to normal soon. Time will tell. I am walking a bit better and I am less dependant with the cane.
      So far, so good, So Happy, So Pleased. -tim-

    • Anonymous
      January 6, 2009 at 8:23 am

      Hey Tim! Way to go! Hope things continue to improve and you get back on your feet soon! Keeping you in my prayers. I have not been online much due to having Christmas company down and was so busy with my family being here. I pray 2009 will be a much better year for you and you get well soon! Hugs!
      Linda H

    • January 6, 2009 at 9:48 am

      Great news Tim!
      I just knew it was going to work!!! Now just be sure to keep notice as it gets closer to next month if any symptoms start appearing. The only way to gauge when to do additional treatments is by your watchful assesment. Remember, if you start feeling symptoms, you have to make note and the next month start them before symptoms occur. Good luck!
      Dawn Kevies mom

    • Anonymous
      January 6, 2009 at 10:02 am

      Congrats on finishing a 5 days cycle….hopefully in the future they can arrange for home infusions as it is easier on the body not to lay around the hospital. Just as a reference I tolerate 60 gms in one day so your dose should be doable in 2 if you tolerate it. My infusions take about 4-5 hours and its weird as I always get the same drug (gammugard) the same infusion rate, and the same premeds and one time I have a headache, flu symptoms and the next time I will be fine so its hard to predict. I just look for the final outcome to improve. Good Luck! I’m glad you saw improvements, that’s encouraging.

    • Anonymous
      January 7, 2009 at 2:14 pm

      Hi Tim,
      JanB is right-go for home infusions as soon as doctor feels it’s safe enough. It is so much better to be at home. No bugs and great food and no nurse running your infusion at night-must havd taken some time to get the ivig brand.

      Glad your first infusion went well with hand strength improvement. Next time think headache prevention.

      Good luck Tim

    • Anonymous
      January 7, 2009 at 9:33 pm

      Howdy folks,

      I got the call today. I am approved for home infusions. They use Gamunex.
      Don’t know about that stuff, they gave me panglobulin at HUP(PHL).
      They are gonna mail in the pump, kits and all the drugs in two weeks.
      Still havn’t been contacted by the actual nurse yet, but its early.

      The doctor thinks I can handle it in two days. So, I will Try. I hope I don’t get that freakin headache. Today is the first day It went away since Monday.
      I had one day of flu like that was very tolerable. If that is the worst It get, I can deal with that.

      This stuff is like a miracle. I am walking sooo good. Everyone who saw me today at work and my daughter all said wow, your walking so good today.
      I guess I get 25 days then it tapers off. It undid in 4 days what the 6 weeks of steroids did to me in a negative way. I hope I get on a roll here.
      Thanks- tim

    • January 7, 2009 at 10:33 pm

      not alot of time, call me, can tell you tricks to make sure you always get gammunex. Now that it is approved and recognized, it is popular and sometimes is hard to get. You don’t want to keep switching. So if your insurance calls gammunex direct, they can get you on a special list, enrolled if you will as a prefered recipient. They put a certain amount asside in the start of the year for these reserved people and you will always get it.
      Dawn Kevies mom

    • Anonymous
      January 8, 2009 at 9:09 am


      I get gammunex, too. I have always gotten that except for my first five day load. During that first five day, by the fourth day I had the worst headache of my life. One b/c of the kind of IVIG…it had to be mixed…and two, because of the real sweetheart of a nurse that infused me way too fast. Note sarcasm.

      You are going to love home health. They will take good care of you…will monitor your blood pressure and temp all through the process. You can do as you please at home…I am so thankful for it.

      I cant say how happy I am to hear how well you are doing ! That is just fantastic !

      I was doing really well myself…I had two infusions over two days and I was super strong woman again. Well, maybe not so much…but alot better !
      I’m 10 days out from the last infusion and not doing as well. I would hold my hands together to go up my stairs at home to not hold the rail b/c I couldnt do that before. I’m back to holding the rail but not struggling as bad to pull myself up with it.
      I am pretty sure the changes stem from being back to work…not getting enough sleep at night and high stress. I’m going to keep close tabs and see how this goes. I may ask for my treatments to be closer together.
      It’s so hard to know what’s really going on b/c I DO have to work and be a wife and mother, etc.

      But, getting back to you ….EXCELLENT ! I’ll keep happy thoughts on your continued improvement !
      What an excellent way to start a brand new year !

    • Anonymous
      January 8, 2009 at 1:08 pm

      So happy for you Tim. A long road for sure but forward is the only way. All the best,

    • Anonymous
      January 9, 2009 at 10:02 am

      Hi Tim! Glad to see your are improving and hope those treatments make you well again! Sounds like you are doing pretty good so far. I’m keeping my fingers crossed for you! Hugs! Good luck!
      Linda H

    • Anonymous
      January 9, 2009 at 12:22 pm

      I was supposed to be on Gammagard in the hospital infusions I had [as I’d had that brand in the doc’s offices prior to their discontinuation] and I’d found out that in the last 6 months I was infused? I had the whole rotation of ‘brands’ infused without my doc’s or my knowledge. I was getting reaction after reaction or, worse? NO effect at all from this menu.
      I’m now on home infusions and have the same infusion nurse each time [I am HER patient!] plus Gammunex, and, it is heaven! I’m home, I can watch the tv shows I want, I can fall asleep in a place I know is comfy, and where if I have to ‘go’? I don’t have to wait for that room to be empty! Afterwards, I can do what I call the ‘benedryl stupor’ for a while and then get on with life. It’s a comfort issue, but, I also know exactly how far ‘fire/rescue’ is from my house, and how long it’d take for them to get here and then me to a hospital. I am fortunate in all that, and am grateful. It’s comforting to know that I can get the treatments at home and be safe, plus should any quirks occur, they’d be quickly attended to!
      Honestly? I am preferring the Gammunex to the Gammagard so far….2 years out on it…. But I do believe each of us is different, and what works for one, mite not for another!
      May things truly progress well and fast! You deserve it!

    • January 10, 2009 at 3:18 pm

      I also just started Gamunex two weeks ago. Had taken other IVIG prducts when first diagnosed, but they did not help. I had Gamugard this summer and it did not help either. Once Gamunex was FDA approved, I was able to get it approved by my insurance company.
      When I went in for the infusion, the day after I had discussed Gamunex with the hospital pharmacy, they sent up a”mixed” IVIG which I refused to take. Gamunex is supplied in single use pre-packaged bottles, so be sure to check them prior to the infusion. The pharmacy tried to tell me all IVIG products are the same. After much discussion, the hospital had the Gamunex over nighted from a supplier in Tenn.
      My loading dose was 200 grams over 14-15 hours with no side effects, however I did get a pretty bad rash on the sixth day after infusion which lasted about a week. My follow-up doses are at three week intervals at 100 grams. Round 2 is set for Thursday. This is the first time in over six months that I have seen inprovement in my balance.
      So glad to hear it is working for you. Good luck,

    • Anonymous
      January 12, 2009 at 10:34 pm

      I see the importance of finding the brand that works for you and trying to stick with it. I find it odd that one brand works and another brand doesn’t.
      It would seem more so as a difference with reactions or additives causing issues like headache, nausea and side effects. Perhaps some brands don’t work well because the process’s are different and the antibodies survive differently or something, I would love to hear theory on that.

      The scary part to me is how fast this can work when suffering for so long and so gradual of a decline. Then hearing how some it works well on the first infusion and not on subsequent treatments. It goes to show you how fast an attack like GBS can take you down. If it can be corrected quickly it can take its toll quickly as well.

      I thought recovery after IVIG would take the amount of time it took to get damaged if not longer. In my case, and I have only had one treatment and I Have gone back in time about 1 year in 1 week. I am amazed and scaired, In awe of the power of the treatment yet just comprehending the dependance on a bottle of liquid to keep me vertical.

      I did suffer a severe allergic headache toward the end of the treatment that lasted a few days, then some nausea like I have never before experienced and also the loss of appetite. Still not sure if it was viral or treatment related. Either way, A small price to pay for the gift of strength and power. I can see how depression occurs prior to treatment when you feel sick after getting it.
      We’ll see how it goes this week, I am mega optemistic now. Nothing to this point has worked, so I have a boost of hope or a least a step in the right direction anyway on the long, long road ahead.
      Just giving you all the blow by blow of my account. thanks–tim–

    • January 13, 2009 at 9:00 am

      The headaches will get better with time. Kevie is not sure if he has built a tolerance to the pain, or his body has built a tolerance to the affects of the medicine. In any event, we have noticed that if we keep the headaches to a minimum, the nausea is not bad, sometimes nothing at all. Try to remember to take the pre-meds around the clock, even 2-3 days post. I should mention as you already know, everyone is different, this is just what works for us and we wanted to pass it along. Things change each time, for instance, we used to get the headaches on the 2nd day of infusion, then 3rd and so on. Now we get them 48-72 hours post infusion. We have made a recent adjustment just this last infusion and decided to take the premeds on the first day only during infusion and then on the 2,3rd day, we only take it once. We now focus on post infusion around the clock pre-meds as this seems to be his problem now. I will be home after 11am today if ou still wanted to call.
      Dawn Kevies mom

    • Anonymous
      January 13, 2009 at 5:19 pm

      Hi Tim! Sorry to hear your last treatment was with a bad reaction! Hope that in time they get easier and less stressful! And hope you are seeing a big improvement on getting well! Wished I could answer that question! Might be the person itself and the way their immune system reacts to the IVIG brands. Wishing you my best and hope to see you well again!
      Linda H

    • Anonymous
      March 16, 2009 at 3:48 pm

      Howdy All,

      I had a three month post follow up after my 3rd set of treatments. Both the doctor and myself are pretty pleased. So far I regained the toe ups, heal walking, some stamena and my hands are normal. still have sensory damage in both feet but getting better. Random spike pains in my hamstring (RH).
      Still can’t run but for a few feet. So far, really happy. the headaches post treatment are getting better as most of you have indicated. the Doc is swithing to 85 grms every two weeks instead of 170 a month, b/c the aching returns after week three but I don’t really lose strength. He said if schedule allows in keeps things smoother.

      I get these spotted red eczema or buttons but he said thats normal and that IVIG make them blossom so to say. So far So good! I havn’t posted much lately but have been reading. I Hope everyone is as well as can be.–tim–
      Take Care Everyone. Summer is about Here and I am Glad Winter in about behind.

    • Anonymous
      March 16, 2009 at 6:17 pm

      You lucky guy! Glad to see that you are pleased and hope that it continues.
      The IVIg gives me hives, and strangely, if I don’t get hives I find no improvement…the more hives the more improvement.

    • Anonymous
      March 16, 2009 at 6:38 pm


      If you don’t already know about pre-treatment, I was pre-treated with 60 mg/day of prednisone for three days prior to infusion due to a serious allergic reaction (aseptic meningitis) to IVIG my first time. The pre-treatment made all the difference — no reaction. And drink lots of water. Rent tons of DVD’s, you’ll have enough time to catch up on movies you’ve missed. Like me, I hope that you experience pain relief (from decrease in nerve inflammation) within 48 hours of your first infusion.

      Congrats and good luck!

    • Anonymous
      March 16, 2009 at 7:59 pm

      Hey Kristin and Pablo,

      thanks for things. so far I didn’t rent any dvd’s, I have been talking with the
      ivig nurse pretty solid. we get along well. Glad about that too. skin problems are a downer but thats ok as long as we can get around.

      We did watch the “Under our skin DVD” thats about Lyme disease. pretty scairy too. OOP, gotta get packin, I’m drivin to Boston tomorrow. See YA!

    • Anonymous
      March 17, 2009 at 8:31 am

      You are very blessed my friend. I have yet to do the heal walk….I think my damage there must be permanent. Once I was able to get on my tip toes but that’s no more, too. All of that is gone. The more I read about how well you are doing, the more frustrated I am getting with MY dr. So much for Dr aggressive. Anyway…I am truly happy for you and glad to know that with the right amt of ivig…there IS hope.

      keep up the good work !
      It’s gonna be 75 in Omaha today….oh yeah, I’m loving this !
      Adios to winter !

    • Anonymous
      March 17, 2009 at 11:00 am


      The skin rashes are a real nuisance. I still have them two months after IVIG. My Dr. prescribed a 1% steroid cream that relieves the itching. But if skin rashes are the price to pay for the benefits of IVIG, then I’ll gladly tolerate them.

      Your story is very encouraging; thanks for sharing your experience.