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Honored Contributor
Posts: 19,462
Registered: ‎03-09-2010

CVID Chronic Variable Immune Deficiency

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

Stop being afraid of what could go wrong and start being positive what could go right.
Esteemed Contributor
Posts: 5,050
Registered: ‎03-15-2021

Re: CVID Chronic Variable Immune Deficiency

@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!

Honored Contributor
Posts: 13,813
Registered: ‎03-13-2010

Re: CVID Chronic Variable Immune Deficiency

@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. 

 

Honored Contributor
Posts: 19,462
Registered: ‎03-09-2010

Re: CVID Chronic Variable Immune Deficiency

@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. 

 


 

Stop being afraid of what could go wrong and start being positive what could go right.
Honored Contributor
Posts: 13,510
Registered: ‎05-23-2010

Re: CVID Chronic Variable Immune Deficiency

[ Edited ]

@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.

 

Honored Contributor
Posts: 19,462
Registered: ‎03-09-2010

Re: CVID Chronic Variable Immune Deficiency

@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.

 


 

Stop being afraid of what could go wrong and start being positive what could go right.
Honored Contributor
Posts: 19,462
Registered: ‎03-09-2010

Re: CVID Chronic Variable Immune Deficiency

@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.

 


 

Stop being afraid of what could go wrong and start being positive what could go right.
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Honored Contributor
Posts: 19,462
Registered: ‎03-09-2010

Re: CVID Chronic Variable Immune Deficiency

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

Stop being afraid of what could go wrong and start being positive what could go right.
Honored Contributor
Posts: 16,617
Registered: ‎03-09-2010

Re: CVID Chronic Variable Immune Deficiency

@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!

Honored Contributor
Posts: 10,467
Registered: ‎03-09-2010

Re: CVID Chronic Variable Immune Deficiency

So glad there is a treatment option for you.

Have they given you the option to do at home?