Sick after infusions??

Tarabell-I take Compazine for the occasional nausea–could you check with your doctor and get on something for your vomiting as a pre med to the ivig? Also, are you taking anything else like Tylenol and Benadryl pre meds? The migraines and vomiting are a vicious circle-if your doctor can treat one, hopefully would help the other. My best friend used to get migraines a lot and she started taking a herb, called Fever Few, made by Nature Sunshine, and she rarely gets them now–just one suggestion for you.

I have been receiving ivig for 8 years, get it for two days every two weeks now. Right now that is the only thing out there that works for me long term. Until something else comes out that is more effective.

Good luck. Emma

Hi Tarabell,
My 11y/o son gets ivig once a month for 4 days. He has been getting it for 22 months on and off, the last 9 months consistantly. Some people take it for life, others are able to wean off of it and their immune system rebalances itself with the aid of the ivig. I am banking on this. Children usually have a pretty good chance of recovering. This next thing is technical, and I am reading about it as a mom, not a doc, so it is a subject that I need help figuring out, but here is my theory, and I think it still could apply to you because of your age. There is a gland called the thymus gland, it is about 15 g at birth and continues to grow and change through puberty, getting up to 25-30g. At around 25, it starts shrinking and is 25g at around that age and by 60-70, it is gone. It’s function (as I read it per medical abstracts) is to separate t-cells, good from bad and not allow the bad ones to get in the blood. Auto antibodies, This is what happens to you guys, I
believe, your thymus is not doing its job. So I think because people your age and younger have a changing thymus gland, you have the best chance to beat this because you can get it to do what it is supposed to via ivig. Kind of like rebooting it or retraining it. Maybe someone with an immunology backround can chime in and tell me if there is something in my thinking! But I hope I may be on to something. Regarding your head aches. My son suffered with these sooo…. bad. He would get the aseptic meningitis reactions, fever, chills nausea, headaches, vommitting, you could actually put your hand at the back of his head, push his head so his chin hit his cheast and his legs would lift by themselves, due to the swelling of his spinal chord. Just in these last two months have the headaches leveled off. Some pointers from things we learned:
1. Ask what kind of ivig, you are getting, be sure it is not a powder form (our experience, everyone is different) The powder had the worst affects for Kevin.
2. Ask for a slow flow rate, Kevie maxs out at 39, but as an adult you could go higher. Since you are experiencing reactions, you could ansk them to max out at 50 and slowly get to that point.
3. Pre- med and continue the same medications during the whole infusion, even after between the days as well as 2 days post. For instance, if you infuse for 4 days, take the meds 24 hours around the clock for 6 days. As I said, all are different, this is what we do, as Kevin stopped getting headaches during the infusion after a while, and instead got the 36 hours post.
4. Drink liquids before, during and after.
5. Pre meds, and duration meds (same) Benadryl, we take it po, the iv push burns for Kevin and I read that it is safer to take it orally for children so as not to risk heart attack. Tylenol, 2 regular stregnth as it is 125 mg stronger than 1 extra stregnth. Either Motrin or aleve, 3 hours after the two mentioned previously. The motrin is every 6 hours, aleve every 12. Take one or the other of these two, not both, we use aleve, and it only is taken every 12 hours. You can take zofran for nausea, but its side affect is head ache !! Duh, in my opinion, headache causes nausea and nausea causes headache!! If we keep Kevies headache under control we avoid the nause. It took a few months to get that under control.

Remember, everyone is different and you have to figure out what works for you.
About the every 6 weeks, we too could go longer than a month, maybe even 5 months. The medicine itself only last 42 days. So if you are not using it up faster by over producing those auto anti bodies then you are fine. But if you are feeling ANY symptoms, you already are in an attack mode before the first symptom. So chart your progress/regression. Let your doc know if you feel anything before the 6 weeks. Because once the attack starts, you wipe out any healing you may have started and you start from scratch. Lot of info to throw at you, ask questions, lots of people will respond.
Dawn Kevies mom

Tarabell

Yes you are not alone about getting sick after infusions! 🙁

I sometimes get the headache but I get all the flu like stuff!

Another problem I have had the last 2 times is that my blood pressure goes very high! 160 over 110!
I am going to speak to doctor on Thursday about this and my next infusion will be mid August.

I haven’t kept up with Tylenol and Benadryl post infusion perhaps I’ll try that next time. I also have to drink more after the infusions.

Many people have problems/side effects from the IVIG but without it we can’t function.

Keep asking questions, we all help each other trying to answer and we also learn something!

Rhonda from Canada 😉

Sadly the side effects can be pretty nasty at times, my treatment ended Monday and so far I’ve had the headache, nausea, stuffy nose, chest congestion etc. since it started on Saturday. I am taking 20mg of prednisone to ward off the headache, if I can keep that under control I usually won’t actually vomit which makes the headache infinitely worse. I think the prednisone works pretty well for the side effects it’s just that we increased my Ig dose this time around and didn’t increase the prednisone. I can’t emphasize the water intake enough either – sometimes I can’t eat because I’m drinking so much water but if I don’t I will wake up in the middle of the night with a screaming headache.

I feel for you – if you aren’t already taking two benedryl before hand you might try that too. My side effects lessened when I went back up to two benedryl. I know… I hate being in a coma too but it’s better to be in a coma for your treatment than suffering for weeks afterwards.

Good luck,

Julie

Julie,
Curious about the stuffy nose thing, the last two times Kevies got that. Although he did not get the classic ivig headache, he did get a mild sinus headache(totaly tolerable compared to the later) His eyes were puffy, (under the eyes) like he gets when he has a sinus infection. Maybe along with the ivig you guys get someones allergies temporarily? Oh well, see you later, off to wash the windows outside, Nick my 14 y/o is having his graduation party this weekend.
Dawn

Tarabelle,

I have had some of the same problems with being sick after IVIG. My doctor now makes sure I am well hydrated prior to infusions. He gives me 500ms of normal saline IV. Also, I take Kytril and Extra Strength Tylenol one hour prior to infusions. This has helped me tremendously! My day for infusions are Thursdays and I still get a slight headache a couple days later. They are not bad at all. I used to be sick with headaches, nausea and vomiting for several days after infusion but now, practically no symptoms at all.

[QUOTE=Dawn Kevies mom]Julie,
Curious about the stuffy nose thing, the last two times Kevies got that. Although he did not get the classic ivig headache, he did get a mild sinus headache(totaly tolerable compared to the later) His eyes were puffy, (under the eyes) like he gets when he has a sinus infection. Maybe along with the ivig you guys get someones allergies temporarily? Oh well, see you later, off to wash the windows outside, Nick my 14 y/o is having his graduation party this weekend.
Dawn[/QUOTE]
Dawn,
I’m not sure if it’s that or that you are “allergic” to one or more of the multitudes of antibodies. I’ve been curious about this since the congestion happens every time regardless of the quantity of benedryl I take. I’m seeing my Neuro-Hero tomorrow so I’ll ask him. I do expect him to know everything. 😉
Julie