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Old 02-08-2011, 06:57 AM   #1
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perfectlypeg HB User
IVIG for hypogammaglobulin

I received IVIG gammaglobulin since sept 2005 till august 2010 receiving monthly infusions. I would always get extrememly ill for 4 days afterwards with fever, migraine, fatigue. In fact I was so sensitive to the infusion that they always had to run a full bag of saline right along side of the gamma to water it down, so to speak. I always drink tons of water and take 4 benedryls prior and during the IVIG, to no avail, I still will get sick.
So in august I changed to the sub-Q and I have been trying to tweak it since then. If I do have symptoms they usually last just a day, but it is still four days a month. I like the sub-Q better because until this January I was staying pretty infection free. Then January hit like a lion and I have been down more than I have been up. My IgG numbers are better now even over 700 which for me was a rarity. I think the Immunologist I saw all liked to play the "let's see how low we can go"
My dosing now on the sub-Q is 50g per week. I think it was a little more when it was monthly IV infusion.
A big plus for the sub IVIG is that you don't constantly wear and tear on the veins. I got tired of the infusion center always bugging me about putting a port in just for their use. The last time that happened I got a MRSA in that port so I am real gunshy.
My question is this. Am I the lone ranger here or do others of you have trouble finding an immunologist who is interested in the least about seeing us get better. I've only had three different immunologist since 2000 but as time goes on, they've dropped me leaving me in the lurch for getting treatment. Then I'm back to square one with the "how low can we go" game. Until I changed to the sub-q therapy my IgG levels were never in the normal range always skimming 500. I'm once again looking for a new immunologist as the current one knows nothing about sub-q and if I want to stay on it, he's not interested. Do you also find a time when the doctors seem to get bored with your care? To put it mildly I'd like to actually find a doctor who wants to see me get better, not just survive. This is not the day and age to have a chronic illness as far as my example. Of the doctors I see each year, 90% of them refuse to take me as a patient. I've tried everything from sending my records 3 weeks ahead to dancing the texas two step for 'em. Nothing doing. When I first became ill in 1999 the doctors would try to explain their shame away for not taking me. Five years later they were still slightly embarrassed, but the shame had passed. Now they don't even have the curtesy to tell me to my face , but send the nurse in to give me the bad news. Does anyone know of a way that a patient can find out if a doctor will take them or not, before the visit. Because at this rate, I am never able to find a good one. Thanks, I live in the San Antonio area, if anyone is near. I found Vivaglobulin to be less symptomatic than the Hizentra I take now, go figure?

Last edited by perfectlypeg; 02-08-2011 at 07:00 AM. Reason: I added which IVIG product I use.

 
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Old 02-09-2011, 06:48 AM   #2
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Location: Bakersfield, CA, USA
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kelli1b HB Userkelli1b HB User
Re: IVIG for hypogammaglobulin

Hi there! If this gets changed by moderator, I apologize and just message me and I can give you more detailed info. But if you go to the immune deficiency website and contact them they will provide a list of immunologists who are in your area. These will be docs who treat a lots of PIDD patients. I am in a wonderful support group too if you are interested. There are a lot of us on there with this. Just message me and I will be happy to provide you more info. I am on 50 ml too of vivaglobin. I was on ivig and hated the side effects. I have a more experienced doc I drive to go see 2 hours away who is overseeing everything as the docs here know nothing. Hang in there and again feel free to message me if you like

 
Old 02-10-2011, 06:20 PM   #3
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Gcurious HB User
Re: IVIG for hypogammaglobulin

hi,

I was diagnosied with CVID last year, but it took a year to get treatment...doctor just was never registering i wanted treatment and wouldn't give up my files....

I've had 3 infusions. Do a lot of people experience a doctor not wanting to treat them because of the immune defiency?? I am in my thirties and all i know is that in 1996- i had normal counts of blood proteins- so i developed this sometime after. Probably from a thymoma.

So far, I haven't had doctors refuse me as a patient. I am, like the name says-- curious.

Thanks so much!

G

 
Old 02-10-2011, 06:53 PM   #4
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kelli1b HB Userkelli1b HB User
Re: IVIG for hypogammaglobulin

Quote:
Originally Posted by Gcurious View Post
hi,

I was diagnosied with CVID last year, but it took a year to get treatment...doctor just was never registering i wanted treatment and wouldn't give up my files....

I've had 3 infusions. Do a lot of people experience a doctor not wanting to treat them because of the immune defiency?? I am in my thirties and all i know is that in 1996- i had normal counts of blood proteins- so i developed this sometime after. Probably from a thymoma.

So far, I haven't had doctors refuse me as a patient. I am, like the name says-- curious.

Thanks so much!

Do you mean your doc doesn't want to treat your cvid? Or just a doc to treat your infections? Usually allergists will more than willingly treat a patient BUT we later find out we need someone who has a lot of experience with CVID and most of us end up going to the immune deficiency foundation to get a doc referral in our area. A lot of us have to travel to see a doc. Now if you mean a doc to treat your infections, find a good doc who will act aggressively.

G

 
Old 02-10-2011, 07:13 PM   #5
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Gcurious HB User
Re: IVIG for hypogammaglobulin

Quote:
Originally Posted by kelli1b View Post
Do you mean your doc doesn't want to treat your cvid? Or just a doc to treat your infections? Usually allergists will more than willingly treat a patient BUT we later find out we need someone who has a lot of experience with CVID and most of us end up going to the immune deficiency foundation to get a doc referral in our area. A lot of us have to travel to see a doc. Now if you mean a doc to treat your infections, find a good doc who will act aggressively.
i read in the previous post that they had trouble getting a doctor to treat them-- i was wondering if doctors commonly refused CVID patients.

My regular doctor recommended an immunologist to me--after the inital one was so bad-- and I am happy with it. Luckily, there are other people who are also being treated.

One of the doctors in my family doctor's office is kind of common place about it- but i rarely see that doctor. The others two are great.

I also saw people saying CVID is progressive. I've never heard that before. My numbers were really low.

G

 
Old 02-10-2011, 07:42 PM   #6
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Location: Bakersfield, CA, USA
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kelli1b HB Userkelli1b HB User
Re: IVIG for hypogammaglobulin

Quote:
Originally Posted by Gcurious View Post
i read in the previous post that they had trouble getting a doctor to treat them-- i was wondering if doctors commonly refused CVID patients.

My regular doctor recommended an immunologist to me--after the inital one was so bad-- and I am happy with it. Luckily, there are other people who are also being treated.

One of the doctors in my family doctor's office is kind of common place about it- but i rarely see that doctor. The others two are great.

I also saw people saying CVID is progressive. I've never heard that before. My numbers were really low.

G
Funny I just asked the "is it progressive" question to a specialist in Colorado and I was told NO it is not unless you have a lung disease like I do...otherwise you have CVID or you don't and it doesn't get worse or progress into anything worse.

 
Old 02-10-2011, 08:02 PM   #7
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Join Date: Feb 2011
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Gcurious HB User
Re: IVIG for hypogammaglobulin

Thanks! I'm glad it's not progressive, but i don't think my numbers could have gotten much lower in any case.

 
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