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Hypogammaglobulinemia - help for husband

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Old 08-28-2013, 06:16 AM   #1
Join Date: Feb 2003
Location: Cornwall, UK
Posts: 66
nannoo HB User
Hypogammaglobulinemia - help for husband

Hi everyone. My husband has the above illness - he is now 58, and has had this for at least 30 years. He has had many bouts of pneumonia over the years, but is in general quite well. However, he has never stuck to a regular IVIG treatment as he says he finds it does nothing for him. Also, different doctors have prescribed different doses, and different times to take the infusions, which makes him very sceptical.

As he has got older, he gets tired very quickly and falls asleep whenever he sits down for a few minutes. He has no "get up and go" and finds it difficult to keep focused. He refuses to take any vitamin or mineral supplements, and is not interested in talking to others with the same problem, or reading up on any new information on this illness.

In recent months he has suffered from an eye infection which comes and goes. He has had medical treatment for it, but it returns. My big worry regarding his symptoms though is his general exhaustion and ability to sleep any time of the day.

Any thoughts on how I can help him?

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Old 09-04-2013, 03:10 AM   #2
Join Date: Feb 2003
Location: Cornwall, UK
Posts: 66
nannoo HB User
Re: Hypogammaglobulinemia - help for husband

Can no-one offer any advice?

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Old 09-04-2013, 06:23 AM   #3
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Join Date: Jul 2013
Posts: 184
SK59 HB UserSK59 HB UserSK59 HB UserSK59 HB UserSK59 HB UserSK59 HB UserSK59 HB UserSK59 HB User
Re: Hypogammaglobulinemia - help for husband

Hi nannoo,
I'm sorry, your husband is having so much trouble.
i have hypogammglobulinemia among many other autoimmune disorders and have been receiving IVIG for about 2 years. I used to get it for 2 days every 4 weeks but now I get it for 2 days every 3 weeks and it have made a big difference.
It did, however, take a while to tell whether it was making a difference-I don't really "feel" any better after treatments but I have been getting fewer infections.
I was hospitalized 5 times in 2010 & 5 times in 2011. In 2012, I was only in the hospital 2 times and this year once so far.
When I get any type of infection it triggers a blood disorder that I have so I have to be very diligent. The iVIG has reduced the severity/frequency of my infections & has helped keep me out of the hospital.
As I said before, I don't feel different/better after my treatments-in fact I feel pretty bad the day of my infusions-I get chills during the infusion and headaches after but it is worth it if it keeps me out of the hospital.

If I were our husband I would give the IVIG another try-perhaps for a longer period of time. It has been a lifesaver for me!

Best wishes & good luck!


Last edited by SK59; 09-04-2013 at 06:25 AM. Reason: Typo

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Old 09-11-2013, 05:35 PM   #4
Join Date: Aug 2013
Location: CA USA
Posts: 7
MissSophie0 HB User
Re: Hypogammaglobulinemia - help for husband

Only he can choose to take care of himself..My husband is a diabetic and for years I tried to get him to take his medicine, eat right & take his blood sugar, but until he chose to take care of things I was just wearing myself out trying to take care of him. I finally gave up & told him that he was a big boy & I wasn't his mother. I told my husband if he chooses to get sick I wasn't going to nurse him back to health if he could have prevented it..He now eats right & takes he meds..

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exhaustion, immune, infection, tiredness

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