March 31, 2010 at 4:23 pm
Het Big yank,
While those are possible side affects, they are not probable. Realistically, the worst side affect will be intense migrane, the put yourself in bed all day kind, some body aches and possibly low grade fever. That was our experience until I asked that the treatments be spread out and split up. Infussion rate, pre-medication fluid intake are all components as well. Some people have no reaction. The heart attack stroke would be more prevelant in very old people as well as the rate I mentioned. Your doc will probably do blood work to see if you are allergic to ivig. Another consideration is if you are diabetic you should stay clear of ivig that is stabilized with sugars, that could lead to renal failure for a severe diabetic. ?Also if you do use one of those ivig brands, octagam for example I think is one, when you have blood work done to check numbers, you have to have a glucose specific test as the results will be higher with a regular glucose leading the docs to believe you have a diabetic problem but you don’t., Sorry, I have probably inundated you with too much info, once I get started, my brain just keeps going with all of the experiences we have had. Did your doc talk to you about home health care? Usually the first treatment is in a hospital to make sure you can tolerate. After that if your insurance allows, you can set up to have it at home. We love it. Our nurse will play xbox, drag the pole onto the patio and shoot the airsoft guns, you name it! There are many agencies. We had bad luck with one and now use Coram and have had NO problems for 3.5 years. They always meet our needs. Keep us posted
AnonymousApril 1, 2010 at 5:55 am
In descending order of magnitude mine were:
back and hip pain
flu-like symptoms (feverish, weakness, etc)
thick, super thick, blood – like jello
anything else was masked by the above or I’ve forgotten it. I am currently on sub-cutaneous Ig due to the side effects of IVIg.
Note that not all of those side effects kicked in the very first time I had IVIg. It took more than 4 years for those to build to a point where they were crushing me.
AnonymousApril 1, 2010 at 8:57 pm
Julie hit it on the nose! The first treatment (loading dose of 5 days) is awful. After the 5 day hospital stay, I was in bed at home for another 10 days suffering from all of the above. On the 11th day, the clouds cleared and I regained strength. By the 27th day (counting from the 1st day of treatment), I felt like super woman!! I forgot what a life without pain was like, let alone having energy again! Although it was short lived and 2 months later I had to have another 3 day treatment, I feel a sense of hope. I am 10 days post treatment and although I did not get the benefits like I did from the first one, I am hoping that between my doctor and I, we can figure a way to get me back to that peak of wellness and have me treated before my body crashes because once the treatments started wearing off of me, it was a matter of 2 days for me to be where I was before any treatments.
Best to you!:)
AnonymousApril 1, 2010 at 11:20 pm
BUT, not all of us experience side effects. I was on IVIG for four years and even when I had two five day loading doses I had no side effects. I never needed to be pre-medicated, no headache, no flu like symptoms, nothing. I could take the IVIG on fast drip.
Unless I’m the only one, there is a flip side.
AnonymousApril 4, 2010 at 1:35 am
[QUOTE=guskno]Julie hit it on the nose! The first treatment (loading dose of 5 days) is awful. After the 5 day hospital stay, I was in bed at home for another 10 days suffering from all of the above. On the 11th day, the clouds cleared and I regained strength. By the 27th day (counting from the 1st day of treatment), I felt like super woman!! I forgot what a life without pain was like, let alone having energy again! Although it was short lived and 2 months later I had to have another 3 day treatment, I feel a sense of hope. I am 10 days post treatment and although I did not get the benefits like I did from the first one, I am hoping that between my doctor and I, we can figure a way to get me back to that peak of wellness and have me treated before my body crashes because once the treatments started wearing off of me, it was a matter of 2 days for me to be where I was before any treatments.
Best to you!:)[/QUOTE]
Same thing here.
I am not CDIP, I was just a plain GBS patient.
Those 5 days crushed me too.
It was funny too, because my doc told me the spinal tap would be much worse than the IVIG treatment.
I remember getting the spinal tap, and thinking that there was nothing to it.
(Apparently I had a really good doc doing it, because I didn’t feel ANYTHING, no pain, nothing)
But the 5 days of IVIG… UGH!
I had a bad reaction the first day, because the were going way too fast with it.
The rest was okay, but I remember having to pee a LOT!!!
After the IVIG was done, I ended up getting sick with flu-like symptoms and a high fever that wouldn’t go away for about 2 weeks.
However, even though this sounds like hell…
I do NOT regret getting it…
Because IVIG was a miracle drug!
Within days, the numbness and all the horrible horrible nerve pain went away.
AnonymousApril 4, 2010 at 8:34 pm
Good resource is the most recent issue of IG living magazine… you can get paper magazine or on-line for free, and not pesky ads or other things as with many sites.
It covers the basics plus. For the more pesky aspects? Ask all here. They have been there, and done that!
April 13, 2011 at 5:52 pm
Hi, I just started IVIG this month. I was recently diagnosed just a few weeks ago. I had two loading doses a few days ago. They started the drip very slow and increased the rate over about 4 hours. I did great. No side effects when the IVIG was going in the first day. The second day they ran it in at a faster rate since I did good the first day. It only took 2 hours the second day. I felt great for the most part. I did get a headache at about 2 am the second day (it was like a migraine). But since I am use to functioning with migraine headaches I did get up and go about my day with the headache. It was the only side effect I had. It lasted about 2 days. So far, so good. I am also seeing some good effects due to the IVIG treatment. My hands were clumbsy before the treatment. I have not dropped things since the IVIG. I don’t have a burning feeling in my hands anymore either. I still have very mild tingling in my feet, mostly at night for about 15 minutes after I lay down. But then the tingling stops and my feet feel normal the rest of the night. I hope starting the IVIG this early into the disease will halt me where I am at (hardly notice any symptoms) and keep me from progressing. I can live with the mild symptoms I have but am very frightened about the future if I progress. So I am trying not to go down that road for now and will cross it when and if it happens. Good attitude will also help with healing. Good luck. Oh, I had Gamulux which is sucrose free.
AnonymousApril 14, 2011 at 10:48 am
I was dxed in Dec ’10 and started IVIg in Jan ’11, 55y/o female. Didn’t have any side effects; maybe a slight headache after the 4th day of loading dose. Or it could have been stress!?! Anyway, same as above; start slow increase gradually. I couldn’t get faster than 150/hour without irritation so my infusion went longer than most. Don’t care – didn’t want other side effects. Make sure you HYDRATE well before infusion…lots and lots of water a few days before during and after. I’ve had 4 treatments every 3 weeks thereafter and handled each one well. Good luck I hope you do well also!
April 14, 2011 at 10:55 am
How do you know if the IVIG is working? Will you be on treatments now every 4 weeks for life or does it ever get to the point where you can go longer between IVIG infusions? I see my nurse in about 3 weeks but I don’t have an appointment with my neurologist for follow up yet. I guess after seeing the nurse for follow-up then I will get to see the neurologist to talk about my treatment plan going forward. I am anxious most of the time because I don’t know much about my future or how this disease will affect me. I get scared when I go in this forum because I don’t know how I will handle it if I become as disabled as people on this forum. It seems everyone on this forum is so bad in terms of the disease and that scares me because do most people progress over the years from mild to severe or are there people living with the disease that go on with life and continue to me mild and never progress to the sever, disabling form.
AnonymousApril 15, 2011 at 4:42 pm
[COLOR=black]Not all of us who post are disabled. Please remember that most of the people who post here are in the early stages of the disease and so are just learning the ropes; have continuing or worsening symptoms where they need information and support; or are here to help support others. My guess is that there are 3500 to 30000 people in the USA with CIDP. Active posters here number around 100 to 300. That suggests that 90% of people with are doing well enough that they don’t feel a need to come here.[/COLOR]
[COLOR=black]I get treatment, yes, but I live my life almost as I did before. Now, I cannot say that if I had been a mountain climber that I will still be able to do that. And it is true that I am not as strong or have the stamina I used to have, so I make some small accommodations. Otherwise, you would never know that I have CIDP.[/COLOR]
[COLOR=black]As a further example, a friend of mine does a limited number of home infusions. One of her patients has CIDP. He gets a dose of IVIg once a month and otherwise lives his life as normal, being the principal of a school, riding his bicycle every day, and so on.[/COLOR]
[COLOR=black]In other words, there is a reasonable chance that you will get back to nearly normal. It may take a while, and it might not be easy, but it is likely to happen. There is evidence that a third of CIDP patients can even stop treatment with no ill effect, suggesting that it may not be life-long after all.[/COLOR]
[COLOR=black]Godspeed in finding a way to deal with the disease.[/COLOR]
April 16, 2011 at 6:25 pm
Thank you Mark for your post. I am just so scared. I just don’t know what to do or how to act. Everytime I feel something weird with my body i freak out and don’t know if it the CIDP progressing or something happening due to the IVIG i received a week ago. I feel alone because I can’t call my doctor everytime i feel a twinge or muscle ache. But I get so scared. I have been crying a lot lately and feeling depressed. I sat on the couch all day today and did nothing at all but cry. I think depression is setting in. I have another headache today. I assume it is from the IVIG. I don’t know if you can get a headache related to the IVIG a week after receiving it. My head also feels buzzy and I feel a pulse in the head and neck almost like my head is a big heart beating with my heart. It is very weird and scary. Other than the headache and pulsing head I feel better with my hands and feet a bit. I hope I am strong enough to not let depression beat me down and move on and get back to normal or at least a new normal living with CIDP. My 7 year old daughter deserves a mommy that can play an enjoy life with her. I hope I can get that back.
AnonymousApril 16, 2011 at 11:51 pm
I just had my first ‘booster’ a week ago. Some fatigue, but I don’t know that it was because of the infusion. I tend to push myself, so it may be that I have not yet learned how to pace myself properly.
The first, the 5 consecutive days of infusion, I loaded up on water for two days before the first of the 5. The only problem I had through the whole course was a slight headache after the third day. I realized I had consumed more coffee than water that day and a milkshake with lunch after the treatment. So I pushed more water and the headache went away.
After the final day, I was quite tired and went to bed two hours earlier than the norm. I was really quite tired for several days afterward, but eventually gained back some stamina. For the 1 1/2 weeks up until those first treatments I was losing some sensation almost daily. That stopped after the third day, so I am very thankful for the treatment despite those few side effects.
I’ll be having one ivig treatment a month for 6 months. I am praying this will be all I need but realize there are no guarantees. Physical Therapy is helping with balance and muscle conditioning.
I hope your experience is great. Thanks to all of you who post here!:)
April 18, 2011 at 8:45 am
Today I feel pretty good. I woke up without a headache and my feet and hands feel almost normal. I still feel kind of light headed at times and I get fatigued easy when I do some activities. But other than that if I don’t think about my CIDP I almost forget I have it. I hope this is due to the IVIG treatment I received a little over a week ago. I hope that I don’t get any more symptoms and I can stay where I am at with maintenance doses of IVIG. I am at work today and feeling bright eyed and good.
AnonymousApril 21, 2011 at 1:59 am
I feel the same way. On 4.12.2011 I had my first of four IVIG treatments. This is my second bout of GBS since 2002. I kinda feel worse, but I am not sure. I am second guessing myself. Now I am vomiting and have very loose stools. Could this be side effects? It has been 9 days? Shouldn’t I be better by now?
AnonymousApril 21, 2011 at 2:05 am
*Please note* My first bout with GBS was the acute axonal variant. I was on a vent and was COMPLETELY shut down for 8 months. This time I am lucky, it seems that it has only affected my legs. I am not expecting a miracle, but I am concerned that either the IVIG is working or it IS NOT working and I have lost the ability to gauge my recovery because this time is night and day compared to last time. any suggestions?
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