tag:blogger.com,1999:blog-4648772162641668133.post6643122808082878289..comments2023-11-05T02:53:54.759-08:00Comments on A Life Uncommon: Inherited Common variable immunodeficiency (CVID) first visitDonettahttp://www.blogger.com/profile/13530145585581721795noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-4648772162641668133.post-26066661307472545122010-06-22T03:54:10.561-07:002010-06-22T03:54:10.561-07:00I was diagnosed with CVID over 25 years ago and ha...I was diagnosed with CVID over 25 years ago and have had over 350 infusions. May I offer some advice?<br />First and foremost, the IDF's, Immune Deficiency Foundation, latest study showed that over 54% of CVID of patients rated their health as good, very good or excellent. The vast majority of patients who were diagnosed before infections had permanently damaged the do great with IVIG. <br />With that said, I recommend you get some of the free publications from the IDF; your explanation of the role of T-cells and B-cells is not accurate. To be honest it really doesn't make much difference to your treatment, it's just comforting to understand it better. <br />I'm not sure where you got the information that IVIG needs to be given slowly. It is definitely better to start of slowly, but many of us take it relatively quickly. I get 80 grams, probably double what you get, (the initial dosage is by weight) and it takes less that 3 hours. My advice is to make sure you are getting the right product, most patients who have reaction do much better on one of the other IG drugs, there are 8 approved in the US. If your IgA is still intact make sure he uses a low IgA product, That is a most common reason for bad reactions. <br />My other major / strong advice is to look into getting your infusions at home. I've found that having to go to a physician's office or hospital is a real pain. Going to a hospital to be around sick people just doesn't make sense to me. Home infusions are so much more comfortable. Also the home infusion companies are much easier to deal with and most have program to absorb your out of pocket deductible and coinsurance charges. <br />The is a very active CVID forum on the IDF website. If you like to "meet" other CVID patients it's a great place. The IDF also has a peer volunteer program where you can benefit from the experience of a "seasoned" patient. <br />Lastly, you may want to consider consulting with a physician who treat a large PIDD population. There are some. My doc treats over 75. The IDF can offer some help there too. <br />Good luck, this illness is not a death sentence or a life changer. Just an inconvenience.markinclevelandhttps://www.blogger.com/profile/16565611811291595945noreply@blogger.comtag:blogger.com,1999:blog-4648772162641668133.post-68400091476971742042010-06-21T18:11:12.031-07:002010-06-21T18:11:12.031-07:00I am lifting you up, and praying for miracles in y...I am lifting you up, and praying for miracles in your life sis. I am glad that Dash is doing well. I love you.Denisehttps://www.blogger.com/profile/09275456448997619944noreply@blogger.com