Common Variable Immunodeficiency Support Group

Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.

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Treatment Options.

CVID
CVID

Hello everyone, I would love to hear your thoughts on this.


after doing IVIG for 15 years I ran out of veins due to scaring and overuse. 


Then I went SUBQ. After  3 years of SUBQ infusions I started to get the bad  side effects (migraine, muscle pain, fatigue)


i am faced with the decision of, do the benefits outweigh the side effects? 


Since I tolerate iVIG well, One option is to get a portacath to be able to do IVIG. However getting a portacath is not the safest option as my immune system is already weak. Therefore increasing the risk for infection. 



This is my toughest decision yet. 


Thanks for your thoughts! 



Bella78
Bella78
Hi, I have been on IVIG for 11 years this May. I had the same problem in 2016 and finally decided to get a port when a nerve in my arm got damaged. I have had pneumonia over 25 times in the last 12 years so I know how scary of a decision it is. I can tell you that I wish I had got a port a long time ago. It has been so great. If you do get one, ask for a prescription for Emla cream. It is a higher dose of lidocaine that you put on about an hour prior to your infusion. I put it on and cover it with a piece of plastic cut from a sandwich bag. I never feel a thing. It is wonderful. I don't care for the freeze spray. It hurts to me. Best of luck to you!
momof449
momof449
why don't you get a port? I have one because I literally have no veins, its helps me out immensely
lcmacg
lcmacg
Hi,
I also have lousy veins. I was put on IVIG for 4 years for my autoimmune neuropathy. A year in I got a port. It was great, For the 3.5 years I had it, no problem with infusions. Then Dr. Evil decided I didn't need IVIG or the port, so it came out. Then followed 4 years of awful flares of my painful neuropathy and many serious infections. Finally 4.5 years ago I was diagnosed with CVID and put back on monthly IVIG. There is only one nurse at the infusion center who can hit my veins. My immunologist absolutely refuses to give me a port, due to "high risk of infection and I can just go on SCIG". I do not want to do SCIG. I downloaded a recent medical journal article about a big clinical trial that showed that primary immunodeficiency patients have no higher risk of port-related infections or clots than do other patients. My immunologist didn't cares. She says that when they are no longer able to hit my veins I will just have to do as I'm told and start SCIG. I would do a port again in a second.