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Old 06-25-2010, 10:21 PM   #1
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mom2girlygirls HB User
Question IVIG Infusion on Wednesday when will the headache go away?

I had my first IVIG Infusion on Wednesday for my IgG Subclass 1 deficiency...I tolerated the infusion well the home health care nurse told my husband, I slept right through it. I basically slept all day and through the night but woke up Thursday feeling like I had been hit by a truck! My back, hips and legs hurt so bad, I also had a horrible headache. The body aches are basically gone today but I still have a bad headache! Does anyone know how long this headache could last or have any advice on how to get rid of it?

 
Old 06-26-2010, 10:28 PM   #2
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Re: IVIG Infusion on Wednesday when will the headache go away?

Quote:
Originally Posted by mom2girlygirls View Post
I had my first IVIG Infusion on Wednesday for my IgG Subclass 1 deficiency...I tolerated the infusion well the home health care nurse told my husband, I slept right through it. I basically slept all day and through the night but woke up Thursday feeling like I had been hit by a truck! My back, hips and legs hurt so bad, I also had a horrible headache. The body aches are basically gone today but I still have a bad headache! Does anyone know how long this headache could last or have any advice on how to get rid of it?
What brand do they have you on? I started on Phlebogamma and had the same exact thing. I felt as if my bones were going to shatter. Switched to Carimune and not so bad but am now going to Gamunex because it has a lower IgA content (my IgA is <20. I've been doing them about 1 1/2 yrs and these are my tricks:

1. Hydrate well before (I drink smart water) and Gatorade after (for the migraine)
2. I never let them go over 100ml per hr EVER. If I do, the after effects are hell.

Hmmm thats all I have sorry, those are the 2 things that save me every month. Mostly the infusion speed. Take it sloooooowwwww. Did they premedicate you first? Usually Benadryl and Tylenol? Good luck. People on here are awesome. They have been a huge help to me.

 
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Old 07-05-2010, 03:53 AM   #3
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Re: IVIG Infusion on Wednesday when will the headache go away?

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Originally Posted by kelli1b View Post
What brand do they have you on? I started on Phlebogamma and had the same exact thing. I felt as if my bones were going to shatter. Switched to Carimune and not so bad but am now going to Gamunex because it has a lower IgA content (my IgA is <20. I've been doing them about 1 1/2 yrs and these are my tricks:

1. Hydrate well before (I drink smart water) and Gatorade after (for the migraine)
2. I never let them go over 100ml per hr EVER. If I do, the after effects are hell.

Hmmm thats all I have sorry, those are the 2 things that save me every month. Mostly the infusion speed. Take it sloooooowwwww. Did they premedicate you first? Usually Benadryl and Tylenol? Good luck. People on here are awesome. They have been a huge help to me.
Thank you so much for your reply! I finally called my doctor after having the headache for 6 days...They called me in something that help and within a few hours it was gone.

Thank you for all of your tips, I will make sure I am well hydrated before I have the infusion in July. I will ask him to slow it down and see if that helps too. They did premedicate with Benadryl and Tylenol. The brand they have me on is Gammagard, have you heard anything about that brand?

 
Old 07-05-2010, 07:23 AM   #4
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Re: IVIG Infusion on Wednesday when will the headache go away?

I've heard it's pretty good. If you have a low IgA, then you want one with a low IgA content as well. I have a sheet. Do you remember how long they took to infuse you? I get 24g and it takes me around 6 hours at 100ml/hour.

 
Old 07-06-2010, 07:47 AM   #5
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Re: IVIG Infusion on Wednesday when will the headache go away?

Hello..I read your message about your IgG1 deficiency. I had bloodwork done last week after having a swollen lymph node on my neck which went away with antibiotic. 2 years ago I had a wicked leg infection and the year before that pneumonia. Just strange stuff happening over the past few years so test was ordered.....only one low level...IgG1...everything else was okay.

I have been referred to a hemotologist but am thinking after reading all of these posts that the treatment option will probably be the replacement injections/therapy. Do you find it is helping? were you getting frequent infections before? Any other symptoms you were having? was your level really low? (mine is just below the normal mark). Any info you can share would be appreciated.

 
Old 07-06-2010, 08:18 AM   #6
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Re: IVIG Infusion on Wednesday when will the headache go away?

I think it started many years ago, in my 20's. I would get my regular bronchitis once or so a year. Then I started having weird things happen like I woke up with a granuloma the size of a golf ball in my abdomen. Had that removed. Had lymph nodes on the back of my neck pop up, removed. Then I got Hyradenitis Superative - GROSS is all I can say, golf ball size cysts in the armpit - had all lymph nodes and sweat glands removed from left side. Then I found out I had ITP (often a symptom of CVID). I didn't start getting the infections until about 2003 when I had my first child. It was bronchitis every other month for a couple of years, mixed with pleurisy. Then sinus infections came WITH the bronchitis and the ear infections and strep. The last 5 years before IVIG were a living nightmare.

IVIG infusions have reduced the frequency of my illnesses and the severity, dramatically. Well except now I have Valley Fever. I had low IgG, low Iga and low IgM. My IgG was - man I can remember, 300? I'm totally guessing here. So it wasn't horribly low just low enough and then I was given the "final" test which was pneumonia vaccine and tetanus. They give them and then check you a month later to see if you have antibodies to them. If not, bam, diagnosis of CVID. I hope this info is helpful.

Last edited by moderator2; 07-06-2010 at 09:21 AM.

 
Old 07-06-2010, 08:49 AM   #7
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Re: IVIG Infusion on Wednesday when will the headache go away?

Wow...I am 45. I also had yearly bronchitis for about 3-4 years...then I skipped a year and had pneumonia...a year later a wicked leg infection that required antibiotics for 6 months and now a swollen lymph node. I only have one level that is low...IgG1. It was "mildly" low.
If you did not do the IVIG treatment was there any other option? What is your prognosis....will you lead a normal life with IVIG?

 
Old 07-06-2010, 09:01 AM   #8
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Re: IVIG Infusion on Wednesday when will the headache go away?

Quote:
Originally Posted by ssimon1999 View Post
Wow...I am 45. I also had yearly bronchitis for about 3-4 years...then I skipped a year and had pneumonia...a year later a wicked leg infection that required antibiotics for 6 months and now a swollen lymph node. I only have one level that is low...IgG1. It was "mildly" low.
If you did not do the IVIG treatment was there any other option? What is your prognosis....will you lead a normal life with IVIG?
If I did not get IVIG I would have lost my job. Period. I had never had strep until I was 37 and then I got it 5 times in one year on top of everything else I normally got. It wasn't getting better it was getting worse. This is the only treatment option. Well subq which is the same thing but not intravenous, it's subcutaneous. Under the skin, in your home.

Normal life ha-ha. I'm not sure. I work full time, have a 6 yr old and am supposed to be starting school next month. I'm trying to live a normal life. Kind of ignore it. But the fact is I will always be more susceptible to everything. I also developed arthritis which is my biggest issue. Well, now I have Valley Fever. I should have been immune by now. I struggle with pain and fatigue mostly are my two biggest concerns. I do worry that I will have to go out on long term disability eventually. I hope not because I love working but I have zero energy for my child once I get home. It sucks.

 
Old 07-25-2010, 07:48 AM   #9
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Re: IVIG Infusion on Wednesday when will the headache go away?

Remember to drink eight glasses of water a day for hydration before starting the IVIg treatment and continuing this a month after the last IVIg infusion. Some doctors recommend to take a baby aspirin to prevent thrombophelebitis. Check with the doctor if you can use aspirin and should not take this if you are on coumadine or have bleeding disorders or if have a history of gastric ulcers. Doctors use Premedication to help reduce side effects. Some recommend that one should take Tylenol or other NSAID for prevention of headaches and pains. Use a benadryl capsule for a rash and even to relax during the treatment. Using low dose prednisone will reduce side effects like headaches.
Hope this helps…

 
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