topic Re: CVID Chronic Variable Immune Deficiency in Wellness

CVID Chronic Variable Immune Deficiency

I am still oxox — Thu, 02 Nov 2023 17:10:09 GMT

I do weekly infusions to keep my immune system healthy just its s hassle but before this I used to get pneumonia at least once a year. Last time I was since was Jan 2020 in isolation for 8 days with double pneumonia and Flu B. Yes they can be a hassle and annoying but it helps me in so many ways. I have had both pneumonia shots twice and have no immunity, in fact that is one of the defining factors if this crazy immune issue

Re: CVID Chronic Variable Immune Deficiency

On It — Thu, 02 Nov 2023 17:13:32 GMT

@I am still oxox I know an infusion has to be a hassle, but I am glad there is treatment available to help you establish immunity. Stay well!

Re: CVID Chronic Variable Immune Deficiency

wilma — Thu, 02 Nov 2023 17:23:16 GMT

@I am still oxox

Sorry about the hassle of getting infusions. I'm glad they're helping you stay healthy. Best Wishes to You!

I took monthly infusions to boost my immune system several years ago. I was still teaching at the time, and they really helped reduce my number and severity of infections.
I've been retired a few years so I'm not taking them right now.

Re: CVID Chronic Variable Immune Deficiency

I am still oxox — Thu, 02 Nov 2023 18:26:25 GMT

@wilma Its nice they were able to do that for you, for most people this is a lifetime commitment

@wilma wrote:
@I am still oxox
Sorry about the hassle of getting infusions. I'm glad they're helping you stay healthy. Best Wishes to You!

I took monthly infusions to boost my immune system several years ago. I was still teaching at the time, and they really helped reduce my number and severity of infections.
I've been retired a few years so I'm not taking them right now.

Re: CVID Chronic Variable Immune Deficiency

Mindy D — Fri, 03 Nov 2023 15:07:32 GMT

@I am still oxox wrote:
I do weekly infusions to keep my immune system healthy just its s hassle but before this I used to get pneumonia at least once a year. Last time I was since was Jan 2020 in isolation for 8 days with double pneumonia and Flu B. Yes they can be a hassle and annoying but it helps me in so many ways. I have had both pneumonia shots twice and have no immunity, in fact that is one of the defining factors if this crazy immune issue

@I am still oxox @Hello oxox. I remember that you were suffering from headaches and were trying to figure out why. When I was reading about infusions for CVID the article I read said that headaches are a common side effect of these infusions. I've added a quote about this below. It's from a highly reputable source.

"The majority of people do well with IVIG, experiencing only minor side effects. IVIG may cause infusion reactions, which may present as fevers, chills, flushing, rash, muscle aches, and nausea. Headaches are also relatively common. These are generally not severe and improve with analgesics and antihistamines." Quote from the International College of Rheumatology.

Re: CVID Chronic Variable Immune Deficiency

I am still oxox — Fri, 03 Nov 2023 16:07:01 GMT

@Mindy D My headaches predate the infusions, but thank you

@Mindy D wrote:
@I am still oxox wrote:
I do weekly infusions to keep my immune system healthy just its s hassle but before this I used to get pneumonia at least once a year. Last time I was since was Jan 2020 in isolation for 8 days with double pneumonia and Flu B. Yes they can be a hassle and annoying but it helps me in so many ways. I have had both pneumonia shots twice and have no immunity, in fact that is one of the defining factors if this crazy immune issue
@I am still oxox @Hello oxox. I remember that you were suffering from headaches and were trying to figure out why. When I was reading about infusions for CVID the article I read said that headaches are a common side effect of these infusions. I've added a quote about this below. It's from a highly reputable source.

"The majority of people do well with IVIG, experiencing only minor side effects. IVIG may cause infusion reactions, which may present as fevers, chills, flushing, rash, muscle aches, and nausea. Headaches are also relatively common. These are generally not severe and improve with analgesics and antihistamines." Quote from the International College of Rheumatology.

Re: CVID Chronic Variable Immune Deficiency

I am still oxox — Fri, 03 Nov 2023 16:57:21 GMT

@Mindy D Also I do not do IVIG which is through your vein, I do SCIG, whihc is through your skin

@Mindy D wrote:
@I am still oxox wrote:
I do weekly infusions to keep my immune system healthy just its s hassle but before this I used to get pneumonia at least once a year. Last time I was since was Jan 2020 in isolation for 8 days with double pneumonia and Flu B. Yes they can be a hassle and annoying but it helps me in so many ways. I have had both pneumonia shots twice and have no immunity, in fact that is one of the defining factors if this crazy immune issue
@I am still oxox @Hello oxox. I remember that you were suffering from headaches and were trying to figure out why. When I was reading about infusions for CVID the article I read said that headaches are a common side effect of these infusions. I've added a quote about this below. It's from a highly reputable source.

"The majority of people do well with IVIG, experiencing only minor side effects. IVIG may cause infusion reactions, which may present as fevers, chills, flushing, rash, muscle aches, and nausea. Headaches are also relatively common. These are generally not severe and improve with analgesics and antihistamines." Quote from the International College of Rheumatology.

Re: CVID Chronic Variable Immune Deficiency

I am still oxox — Wed, 22 Nov 2023 15:14:14 GMT

Another week another infusion, so be it, it has become a weekly thing, I am very glad when it goes well

Re: CVID Chronic Variable Immune Deficiency

haddon9 — Wed, 22 Nov 2023 15:25:33 GMT

@I am still oxox I feel badly for you. It seems you have had far more than your share of various illnesses. Life can be a challenge at times and I wish you the best.

I feel very lucky that I've never gotten so many of the problems that many here have had...never had pneumonia, Covid, etc. I have gotten my share of occasional colds but most were when I was younger and not taking care of myself.

Now that I'm older I do what I can to be well and find that meditation helps a lot to feel good.

Wishing you a happy holiday season!

Re: CVID Chronic Variable Immune Deficiency

bikerbabe — Wed, 22 Nov 2023 15:28:03 GMT

So glad there is a treatment option for you.

Have they given you the option to do at home?

Re: CVID Chronic Variable Immune Deficiency

I am still oxox — Wed, 17 Jan 2024 16:29:29 GMT

Just finished my infusion for the week, I am so glad I can do it myself and do not have to venture out on a 9 degree day. I have been doing this for over 3 years but so pleased when it goes right