I have been diagnosed with hypogammaglobinemia since 2001 and have been receiving monthly ivig infusions for the past year or so. I have recently gone over 2 months without receiving my ivig and am having symptoms of increased tiredness ande fatigue. I am wondering if anyone else experiences these symptoms when there IGG levels are going low and they are in need of IVIG. Your feedback would be greatly appreciated.

MY SON IS TIERD AND SLEEPS ALL THE TIME AND WENT INTO DIABETES. YOU HAVE SOME OF THE SAME THINGS GOING ON AS HE DOES .DOES ANY ONE OUT THERE RECEIVE ANY SSI FOR HELP MY SON HAS BEEN REFUSED SEVARAL TIMES .DOES ANYONE ELSE HAVE THE SAME PROBLEM GOING ON.
LOVE TO AL OF YOU.A MOM

Hello, I to have hypogammaglobinemia. I have been getting ivig for 11 months now. I run late getting it all the time. I do feel tired some times. What medicine were you getting before you started ivig? And how old are you?

I AM 48 AND MY SON IS TWENTY SIX,WAS SICK ALOT AS A CHILD,AND WAS DIAGNOSED AT TWENTY
HE SUFFERS FROM FATIGUE,HEADAHES FROM IVGS AND SERIOUS LUNG INVECTIONS THAT HE HAS BEEN
PLACED IN ICU A FEW TIMES AND WAS UNABLE TO EVEN WORK PARTIME BECAUSE OF LONG RECOOPERATION PERIODS. HIS DESEASE FINALLY
WENT INTO DIABETES,HAS TO BE ON INSULIN NOW
FOR YEARS HE WAS ONLY GIVEN MEDS TO CLEAR UP LUNG INVECTIONS AT TWENTY HE WAS TOLD HE HAD THIS DESEASE AND IT CAUSED HIM TO GET VERY DEPRESSED .HE HAS HAD SUCH BAD PROBLEM
WITH THE SYSTEM THAT IT HAS BEEN IMPOSSIBLE TO GET PROPER MEDICAL TO COVER COST.HIS LAST DOCTOR LET HIM SLIP THROUGH THE CRACKS
AND THE COUNTY WE WERE LIVING IN COULD NOT
ALOW AARON TO STAY ON THERE MEDICAL PLAN.SO HE WAS WITHOUT INSURANCE AGAIN.THEY REASON FOR DENIEL IS HIS AGE NOW AND AGE HAS NOTHING TO DO WITH THIS DESEASE OR ALL THE SIDE EFFECTS THAT CAN ACCURE FROM HAVING IT.
THEY FEEL HE HE IS ABLE TO WORK PARTIME AND THE LAW SAYS EMPLOYERS DONT HAVE TO PAY HIGH
COST FOR INSURANCE AND APPLICATIONS WANT YOU TO LIST YOUR HEALTH BACKROUND.HE HAS BEEN WITHOUT ANTIGENS NOW FOR SEVEN MONTHS AND HIS DIABETES GOT OUT OF HAND AND IN OCTOBER OF THIS YEAR HE IS SUPPOSED TO GET
ANTIGENS AND IT HAS TAKEN FROM FEBUARY OF THIS YEAR UNTIL NOW TO GET ANY MEDICAL COVERAGE TO COVER THE COST OF MEDICATION.
AND I JUST RECEIVED A LETTER THAT THESE PROGRAMS ARE ENDING IN OCTOBER AND HAVE BEEN NOTIFIED THAT HE HAS TO HAVE A HEARING TO SEE IF HE IS SICK ENOUGH TO GET MEDICAL FOR THE PEOPLE WHO REALLY NEED IT.HE JUST WENT THROUGH PAPER WORK AND WAS ALREADY APPROVED AND NOW HE IS AT STEP ONE AGAIN.THIS HAS WENT ON FOR SIX YEARS NOW.AARON HAS BEEN SO DEPRESSED THAT HE HAS HAD SUICIDLE THOUGHTS AND JUST WANTS TO END IT ALL.

I also have hypogammaglobomemia, they discovered it 2 years ago when i was diagnosed with lupus, i get ivig monthly, i no longer work i was a emergency room nurse,, my lungs havegot really bad i now have severe chronic bronchitis, im tired all the time as well , please write me back



janetmcdonald

I also have hypogammaglobomemia, they discovered it 2 years ago when i was diagnosed with lupus, i get ivig monthly, i no longer work i was a emergency room nurse,, my lungs havegot really bad i now have severe chronic bronchitis, im tired all the time as well , please write me back



janetmcdonald

hi i was dx with hypogammaglobonemia 2 years ago when i was dx with lupus, im very ill my lungs are trashed, im a r.n. unable to work i also have 4 children, im so fatiged it is awful though i don not know which is the worst the hypogam or lupus .
i hope you get better truley janet



janetmcdonald

Janet maybe you need to see a hematologist/oncologist to find out if there is something else then hypogammagloglinema and they may need to increase the IVIG doasge or more often plus they may need to add other medications as well. Do you know of any good doctors in Austin, Texas. I was diagnosed with this 25 years ago been taking IM gamma globulin for all of these years but now I have painful joints, tired etc. I;ve been checked for Lupus and all the other and have none, but would like to know how to get on IVIG ?
Thank you,
Jennifer Dewlen

Hi I have hypogammaglobinemia, only diagnosed three yrs ago and now i am on Igg infusions now my 4th lot the first i had a adverse reaction massive rash on chest and major headaches for days afterwards but they help me some times but have been very very tired, lethargic as i was very iron deficiant.is Chronic Fatigue a symtom as i will also have to ask my Hemotologist when i see him next as my bloods are good not lack of iron and my level are great.so I dont know whats happening.
Bella