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Discussion Topic: Adult with CVID
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06-23-2007 @ 8:07 PM
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SubQ is a method of infusion. Smaller more frequent doses are infused under your skin (subcutaneous) (typically around your belly)which is then absorbed into your bloodstream. If you don't mind doing this yourself it allows the freedom to self administer your doses at a time convenient to you (on a regular basis).
I started my SubQ therapy well over a year ago and have had wonderful success with it. Using this method I've reduced my monthly dose to 30 grams SQIG versus 50 grams IVIG while maintaining my trough IgG blood levels very well.  My infusion cycle is 5 grams every 5 days and takes roughly 2 1/2 hours to perform. The infusion rate is something you adjust to your comfort and the equipment is totally portable (you can walk around, work, even nap with it on). I work as an engineer on ships and have even answered alarms and done my evening rounds with my infusion going.
Check around the net. There's quite a bit of info on it. My doctor(here in the US)knew very little about it at first, but they've been doing it for quite a while in Europe. Good luck!
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07-26-2007 @ 11:53 PM
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Hi,
I'm a 22 y/o and I was diagnosed with CVID when I was 12 and I've taken IVIG since then. About a year ago my Dr. in Houston said I was a prime candidate for the SuB Q infusions b/c I lived a considerable distance from the hospital (I go to college in another city and had to miss class and drive to Houston at least once a month- which was a real problem) Switching to the sub Q method has been a life saver. I love it. The type that I have used is vivaglobin and they have a website at www.vivaglobin.com. I also have ITP and it has worked well in maintaining my platelet levels as well. The treatments have been so sucessful that my Drs have no problem with my wanting to work as a Physician Assistant (PA) after I graduate I would definatley recommend it- If anyone has hesitation about having to stick themselves just ask your Dr for lidocane cream- you can put it on about 30 min before you start and I can't feel the needle at all. It truly has been a lifesaver.
-sarah
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07-26-2007 @ 11:59 PM
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I don't know if you've gotten a response about the overseas travel yet but just to let you know. My parents live in Italy and I live in Texas- I travel over to see them for more than a few months at a time and I have taken SubQ infusions for over a year. As long as you have a note from your Dr stating that you need to have the vials with you and the needles as well you can carry it on. I have had no problems at all. Most of the customs officials assume its insulin and when I try to explain its for an immune deficiency they just wave me on. Even with the new iquid limits its fine- either carry your prescription of have a prescription sticker on the vials/box you should have noproblem with the airlines people. Hope that helps.
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07-29-2007 @ 7:21 AM
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I'm 51 and was diagnosed a year ago, after at least 40 years of being sick. (Nice to know it wasn't in my head!) Along with all the other issues everyone mentions, I also have the sensitivity with "smell." Perfumes, certain foods, gasoline, etc. give me a tremendous migraine, which I know means I'm getting a sinus infection. If I'm around the perfumes too long in a poorly ventilated, I actually get pneumonia! Ah! Life is good!
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09-01-2007 @ 9:56 PM
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I'm recently diagnosed CVID as well. I'm starting on SCIG on Friday. There was an excellent article discribing the advantages of SCIG in BioDrugs 2007. It's actually in english so mere mortals can understand it.
I'm a member of Adult PIDers - an offshoot Yahoo group from the discussion forum on the www.primaryimmune.org site. The article is on there. There are instructions on joining the offshoot group on the discussion forum - which is more active than the Yahoo group, but you can't post article on the discussion forum. It's somewhat fragmented, but it works.
I'm looking to meet either online or face to face others with this problem. That's why you'll see dela-where (my standard username) so many places . From what I understand, there's some conference in MA next weekend, and there was supposed to be a "NICE" day focusing on IG therapy in Hershey which I had signed up for, but it seems to have hit some problem and may be cancelled. There is some stuff out there, but it takes looking. There is a website, www.igliving.com from NuFactor. They have a magazine you can sign up for, and they help set up the "Nice" day conferences in conjunction with hospitals. I'm still looking around. What have you found? - Judy
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09-07-2007 @ 8:11 AM
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Judy, I found the same groups and info you found. Guess we just keep plugging along! LC
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01-09-2009 @ 12:49 PM
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I am 51, and was diagnosed approx. 10 years ago. I only started IVIG in Dec '05 and switched to SubQIg in Jan. 2006. I guess I am one of the very few that had an allergic reaction to Vivaglobin and six months later had to be taken off SubQ. I am now receiving monthly infusions of Octagam, and am doing well now. I had a 1 1/2 year period following the allergic reaction that was quite difficult, as we couldn't seem to get the itching to stop. I was on prednisone for more than a year (20 mg per day) and have just come off the prednisone within the last two weeks. Except for my allergic reaction, the treatment was quite liberating! I really enjoyed being able to self administer, and would do it again if there were a drug to which I am not allergic. You may want to be aware that the injection site reactions that the literature talks about can vary in severity. Mine were moderate, but I understand that some people have a severe injection site reaction. These do diminish over time, though. If you would like to know more, please email me at mbmckay@aloha.net Good Luck!
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02-17-2009 @ 12:25 AM
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I have NOT been diagnosed with a PI disease, but believe I have at least some form. I am 50, have been sick with sinus & bronchial infections the past 2 years, and hospitalized once. My Endocrinologist did a lot of blood work back in September, and found that my total IgA was 67 or lower. Does anyone have any suggestions? I had a lot of bronchial infections as a child, but not later; i.e., not until the last few years, and generally it is when I come in contact with mold.
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03-26-2009 @ 6:03 PM
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hi. I also am 45 years old. My CVID was diagnosed in 1996 following sinus surgery after which my infections (fungal and bacterial,including MRSA) would not heal. I have constant joint paint and muscle pain ( I have been diagnosed with lupus also) I just continue to plug along.I have many orthopedic issues incl. osteoporosis and many stress fractures. In 2005 I had an overgrowth of pseudomonis in the left sinus and had to be placed under generaal anesthetic and the surgeon had to scrape chunks of the slime out of my sinus (left only)
I have been on a regimin of IVIG every 3 weeks but I constantly fight sinusitis (ith IV antibiotics for 4-6 weeks at a time. I am SO FORTUNATE because I have the mose swesome doctor. they are few and far between. For those looking for a doctor, look for an immunologist--ask questions of the office staff (does the doctor treat patients with immune problems, does he have any pts on IVIG. does doctor take call and how often,etc. Some ent's also crossover into treating immunology) Also. word of mouth is a powerful, if you could find other immune deficient patients, ask them which doctors are good, bad or indifferent(they will ususally be very honest). My best to you <brendabrown@myway.com>
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04-06-2009 @ 2:50 PM
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Sorry I haven't been keeping up with everyone. I just read your comment and I had bad site reactions to the vivaglobin too. I wasn't allergic to the medicine, but the site reactions didn't subside after 6 months of using it. I switched back to IVIG once a month. Compared to what I went through weekly when I did SubQ of Gamunex this way is liberating for me. When I did SubQ I had to use 6 sites to infuse, for my dosage was 100ml.The amount being a lot plus I had to infuse over a 5 hour time period or else I suffered terrible head and backaches along with lowgrade fevers for 12-24 hours after the treament. I now infuse intravenously over a 3-1/2 to 4-1/2 hour time period and then done for the month.I also have a great nurse that visits and does all the prep for my treatment. I have terrible veins, but she is a sure shot! This is liberating. I feel so much better and my stomach and thighs aren't loaded with lumps anymore!Everyone is different and whatever works and feels good to one may be different for another person. What matters is that we feel better than we did before getting diagnosed. I still fear catching pneumonia when I think about whether I should go back to college and take classes on campus. Last time I attended I got sick each semester with pneumonia. My fear is legit.My Doc tells me to get out and live life and I continue to hibernate. I do a lot at home with art and music. I even put up a site on myspace.com where they allow you to upload your music and artwork photos.Good health to you and best wishes,Suzanne aka bflatblueswoman
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