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Immune Disorders Board Index
Pages: 1 2 3 4 5 6 7 8 9 Showing 1 - 20 of 174 for cvid ivig. (0.001 seconds)


... So I was told that is "classic" CVID, but it seems like there is still a lot we don't know about it. I've been tested for alot recently and it's been rough, but CVID seems like the least scary of all the stuff they threw at me because it seems to be manageable. ... (91 replies)
... There's not a lot of info because it is pretty rare - it happens to about 20% of patients with CVID. There are lots of different types of interstitial lung diseases, GLILD can be deadly. I was diagnosed by fine needle biopsy then I was sent to National Jewish Hospital and they re-read biopsy and looked at the slides and confirmed GLILD (not one of the other ILD's) and set me... (91 replies)
... Hi Kelli1b, I am 25 and was just diagnosed with CVID. I have had quite a few lung infections, but I have also been to the ER alot for lung pain not associated with infection. Also, nodules were found in my CT-Scan as well. My immunologist mentioned GLILD, but I have not been tested for it. I was just wondering what GLILD is and what the symptoms are? There is not alot of... (91 replies)

... ly with an update. I am now on Hizentra and doing very well on it. I hardly ever get sick anymore. I did, however, get diagnosed with a lung disease caused by CVID which kind of came as a shock because I wasn't aware I could develop these things 1. Since I was on treatment and 2. ... (91 replies)
... First, I am so sorry about you being so young with so many problems. I am 60 and was diagnosed last year with CVID and other issues like low T and B lymphocytes. ... (91 replies)
... Hi, I came across your message while searching for a doctor to treat my CVID in Houston. You mentioned that you like your doctor. Does she have lots of experience with CVID? ... (91 replies)
... n home with a special nurse that comes to you and teaches you how to do it. They are trained for this sort of thing. I switched to subq after all the drama with IVIG and now have little to no reactions what so ever. Its a wonderful option for those of us who don't tolerate IVIG well. ... (91 replies)
... I have been getting IGG infusion for the past 5 years and had bad reactions quite a number of times when they tried to speed it up. I am now being infused slowly (all day affair), in addition to the IGG they gie me 1000mg of Tylenol, 50mg of Benadryl and 10mg of Decadron. THe addition of the Decadron has just about eliminated any reactions I have, as long as they keep it slow.... (91 replies)
... Also, the brand of your IVIG can be a big factor. I've been on Gammagard for over a year and I have had no problems. ... (91 replies)
... I am new to HealthBoards....just found it! Wow, what great information and sharing of stories. I am 43, and was just diagnosed with CVID a year ago. I have been receiving IVIG for over a year now. ... (91 replies)
... I am FINALLY doing very well on it. For the first 6 weeks it was really hard. I was having major fatigue after and couldn't see the reason to do subq over ivig if I wasn going to be sick EVERY weekend versus once a month. But it finally went away and now my subq is going awesome. ... (91 replies)
... I was on IVIG treatments for around 4 years and dealt with many problems associated with that treatment. ... (91 replies)
... Sorry but I have to respond. you are right when you say, "People with CVID can have spleen, pancreas, gallbladder and liver problems." However they also can have broken legs, cuts on their fingers and any other illness. ... (91 replies)
... I'm actually doing much better now, in a way. I had to drop out of school unfortunately. My CVID treatment just wasn't under control yet. I now am getting subq which has really gotten my levels up there which is awesome. ... (91 replies)
... Your schedule is REALLY heavy. Anyone would be tired on it. I don't know a lot about CVID yet but enough. If you can cut your schedule down, you'd be better off. ... (91 replies)
... existing kidney disfunction and then yes, IVIG can cause problems...more so if the product you are using contains sucrose. ... (91 replies)
... ter indicative of each other, complete opposites. I don't think thats the case so yeah, I'm totally frustrated. I posted a pic on my FB because I have a couple CVID people on there. Is there a test for Lupus? ... (91 replies)
... For me, it's a hematologist that is completely managing my IVIG care. My primary has no involvement other than to receive updates on my condition. It was this hematologist that diagnosed me in the first place. ... (91 replies)
... crock there is NO RECOURSE so get that out of your head. So just take every benny you can get out of the system. Don't file bankruptcy like I did I had a 900000 IVIG bill thought bankruptcy was the answer I was sued. ... (91 replies)
... There aren't any other docs. I've taken the advice of some other posters on here and reached out to my Primary doc to get a referral to see an immunologist out of town, with no luck, he actually completely ignored my email. The reactions are not nearly as severe as they were in the beginning. I do feel pretty horrible that whole night. Then Saturday I'm in bed with an... (91 replies)




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