CVID

Hi, good to hear from you. I take daily antibiotics (co-trimoxazole) for prevention. It gives me no side effects at all. It's more usual here to take azithromycin three times a week for prevention but that gave me stomach issues so I asked to change. I have amoxicillin at home ready for those times when an infection takes off quickly so that I don't have to see a GP first. That is very useful although I haven't needed them for a few months now.

With the immunoglobulin I've been told it'll be IV every three weeks but I'd rather do weekly subcut at home as many others do, so I'm going to ask about that.

I recently gave up working full-time and took a different sort of job working just two days a week which is lovely. I'm loving five days off each week. I've only been there two months and was dreading having to take time off for chemo but seems that's not going to happen now so that's a big relief.

Good news, Ann. I'm glad things are not as bad as might have been expected. I hope you keep getting good results, or at least not bad ones!

Thanks for the info re: antibiotics. That will be good to have in my back pocket if I start experiencing frequent infection issues.

It sounds like we've learned similar things about IVIG. From what I can tell, it is ideal if you can do the at-home version as there is less of a disruption on daily life and there is more of a constant presence of IVIG in your system -- as the every three week treatment can cause patients to feel up (right after treatment) and down (right before your treatment is due) in terms of energy.

I've only had IVIG once -- back during the ITP treatment days in the fall 2011-- and I remember it was a long day of infusion but one without any complications. I'll be thinking about you on Monday! I hope everything goes smooth for you and that it has the positive result that your looking for!

Good to see you jessmeyer! Sounds like things are going well, happy for you! So far so good here - but still haven't formed an opinion on my new hematologist, won't see her again till next year unless something happens.

My very favorite niece unfortunately is taking after me - autoimmune problems. She recently found she has CVID and does require IVIg bless her heart. I worry about her a lot and really hope this will help her.

Ann, I'm glad things are going well for you too.