Common Variable Immunodeficiency Support Group

Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.

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/ Common Variable Immunodeficiency Support Group

Suppose I am a HEAD case

stimpy
stimpy
Well today I went in for my first Sub-Q treatment, and the nurses were joking with me about my spazz attack last month. They said that I did not even have any of the gammaguard in me when I started having chest pains. So I guess it was all in my "head". I think after so many years of doing this I just am getting so tired of it that deep down inside I just don't want to do it anymore, but despite all that I always go in trying to appear cheery and upbeat. So they did the sub-q today, and they kept telling me "do you REALLY want to do this once a week?" and after I started thinking about it more, I thought "no, not really" so I told them I want to go back to once a month infusions, I apologized to them if I caused them any undue paperwork, etc. they said "no problem". But when I go back I WILL MAKE MYSELF take a xanax and pre-meds (bendadryl, etc.) before I start, because I think I was just getting so anxious and causing myself to get panicked. Don't know why, it just started with in the last two months. But like everybody knows I have been doing this since 1996, so basically 14 years. Ugh! Anyways I can completely understand if people have bad reactions to the IVIG infusions, to do sub-q is better. So stick to what is best for you.
deleted_user
deleted_user
hang in stimpy...

some days are just bad days... we all have them ...

take whatever you need to get through.....

i just dont think i could do sub q it makes me think of my disease every wk rather than every 3 wks (like it is ever out of my mind) also i have a port and i think that helps. i hate to get an iv and having a port takes that stree away. the port makes access easy and no discomfort.

often time i had to be stuck 4-5 times after getting the port i did not have that anymore. i had the port after the 3rd infusion so i have had it since 07 it was heaven sent for me.....

maybe a port would make it easier. i know some dont agree that a port is a good thing but if it causes so much stress that you dread the infusion time... it may be a good idea. my port is under the skin... not a pic line that is exposed outside the skin. i hav not had any trouble the whole time and the meds go in smoother for me... i dont have trouble with my infusions other than back ache and flu like other than that not bad at all and i think it is because the port delivers the meds better...

anyway just my thoughts for the evening......
stimpy
stimpy
Pcon - Your smart to have a port. So much easier probably. And alot less anxiety producing when they come after you with needles looking to get a vein. LOL. It seems the MAJORITY of people on this site all experience the same side effects, low back pain, headaches, naseau, etc. I am very fortunate to be relatively side effect free. I am on gammaguard. I think my problem was mental. I always refuse the pre-meds. It is the waiting around, while they prepare everything, I get myself worked up. So now I want to go back to the infusion. But I will take the premeds and 1/2 xanax to be relaxed. Anyways thanks for the feedback. Debby
deleted_user
deleted_user
my daughter that has cvid passes out when they draw her blood no matter what she tells herself or how much she talks her self out of it it happens....

one reason she is going to pharm school instead of med school!
markincleveland
markincleveland
75% of IG patients still use IV instead of subQ. I too am a IVIG fan who has no desire to go to subQ.

The FDA publishes the "Summary Basis for Regulatory Action." This reports regards Hizentra the replacement drug for ViVaglobuin

The report defines the average adjusted dose for Hizentra compared to IGIV. The rate is (1.53 x previous IGIV dose in g)/ (number of weeks between IGIV dosage). The range is 1.26 to 1.87).

The average adjusted dose for Vivaglobulin is (1.37 x previous IGIV dose in g)/(number of weeks between IGIV dosage).

This implies that the strength of Hizentra is less than the strength of vivaglobulin. Therefore more Hizentra is needed than Vivaglobulin.

Doesn't this imply a hidden cost increase?

Does this mean efficacy is different? According to the report we can expect the types of infections that subjects with PI usually acquire as part of the underlying disease, even while undergoing IgG replacement therapy including sinusitis, nasopharyngitis, bronchitis, viral infections, and upper respiratory tract infections.

We can expect approximately 2.76 infections, use of antibiotics 48.5 days per year.
stimpy
stimpy
Pcon - Ha Ha - thats kinda funny!! But I think your daughter could still be a medical doctor if she wanted, just get therapy to reduce her fear about blood. My 220 pound "manly" husband squeals like a little girl when he sees a spider!! I know alot of people get squeamish and faint when they see blood. I just hate going in and waiting around, and blah blah blah, I just want to get a move on. Plus you have to sit in there with the cancer patients and sometimes it gets depressing. Although it makes me realize I HAVE NOTHING TO COMPLAIN ABOUT. Anyway a port would be cool, I have a SCAR where they always do the stick, it's the only really good vein. Oh well. But I can see how some people would prefer Sub-Q ESPECIALLY if it reduces their HORRIBLE SIDE EFFECTS.
PrincessButtercup
PrincessButtercup
I'm excited because the paperwork for me starting Hyzentra is in process. I think that I will be healthier in that I will reduce side-effects (hopefully), and also reduce exposure to other sick people. The last 2 times I've gone for my infusion everyone has been coughing and sneezing. I'm really hoping that Hyzentra will allow me to be at work more and be more like who I was before the latest flare...which I think has lasted 3-5 years. Anyway, I hope that things work out well for you, Stimpy! :)
stimpy
stimpy
Hey pb I know you have side effects so the sub-q most likely will be the best thing for you. I got all red at the injection site, and itchy. It took about 45 mins or so. The nurses kinda were against the whole deal. They kinda thought it would be smarter to stick to infusion. But remember I DO NOT GET SIDE EFFECTS, NO HEADACHES, FLU SYMPTOMS BACK ACHES, ETC. I am extremely lucky. But I have MENTAL issues, I kinda get myself worked up. So from now on I am going to do pre-meds and a 1/2 xanax just in case. But I really feel you are going to do so much better on the sub-q. It will stay with you longer. What is everybody doing about flu shots, have we all agreed that they are useless? God I was at the unemployment job listing the other day with my husband and this lady kept hacking and hacking and hacking. Oh my god I wanted to scream at her to get out! But she stayed for 15-20 minutes without letting up - she definitely had something bad. I had an anxieity attack because I DROVE ALL THAT WAY AND DIDNT WANT TO LEAVE SO LIKE AN IDIOT I CHOSE TO STAY. But I did not get sick. Anyway I know that season is coming up. Oh boy.
PrincessButtercup
PrincessButtercup
I'm seeing both my pulmonologist and immunologist next week, and they seem to think I should get flu shots as long as it's not a live vaccine, but I really have no clue what they think.
deleted_user
deleted_user
when i was teaching i always got the vaccines... i still got the flu but never so bad i was hospitalized. not sure they help.... but i will continue to get them if they give me 5% protection (that is a made up number no scientifc data) than it is better than 0%!

i still believe in vaccines...... both my daughter and i get them every year.... even though i am no longer teaching... i still have little ones at home who have been sick since school started!!!

so i will get them if nothing more just to make myself FEEL safer!

since i have been battling this god awful asthma crap i am not taking any chances... if i dont get better soon and get off all the inhaled steroids and nebuilzer meds i am sure my family will tie me to the roof of the car and dump me off in a remote location!!! i dont even like myself right now! i dont function well on the inhaled steroids and the neb meds..... aaarrrrrgggggg!!!!

so i am not taking any chances! i like my warm comfortable bed too much!!!!!! i am doing anything to try to stay well!
stimpy
stimpy
Yeah I really don't know what to do. My immunologist said forget about the h1n1 shot, go ahead and get flu shot, and then every couple of years I get the vaccination for the pneumonia. I just do what I think I'm supposed to do. I really don't think it helps though. I don't know does anyone have any absolutely secure knowledgeable scientific absolute answer?
deleted_user
deleted_user
BTW i go to my doc office and get infusion and i have a private room so if anyone is sick i am clueless. i like going there.... i really dont want to bring treatment to the house for one thing i have small kids and i just dont feel comfortable with them having to see that every 3 wks.

for now i will go to the office and watch movies in a private room in a recliner.... the kids already have enough to deal with they just dont need to see all that all the time.

it is really what works for us at the place we are at in our lives right now.......
stimpy
stimpy
Yes - smart - three little ones do not need to see all that apparatus hooked up to mommy, why make them worry.
deleted_user
deleted_user
actually aunt my niece and 2 nephews live with me all my children are grown.. our youngest (the one with cvid is in first yr of pharm school) we are parents for the second time around....
stimpy
stimpy
Oh thats kinda cool. Thats nice that you are able to open your house like that. I think thats great your daughter is in pharm school. So smart. My daughter will be 21 on Sept. 27th, and I need to get her tested for this cvids thing. Scares me. I think having people around you for the most part keeps your mind off your problems. Not all the time but I'm sure it keeps you busy. Thats neat that you get your own private room with t.v. while getting your infusions, mine isn't bad, but sometimes I get the chemo patients in the room with me, young and old alike, it doesn't really bother me because I think for the most part they are all going to be o.k., it just kinda makes me sad, especially the young ones. That's really considerate of you not to scare the girls with all the tubes and everything. Well it is going to be 105 degrees today on good ole labor day weekend (yikes) I think I will go to the mall and sit in the air-conditioner. LOL have a good day. Debby aka Stimpy
deleted_user
deleted_user
stimpy I dont think it was very nice for the nurses to make fun of you have you ever thought of getting your treatment at home? do you have that option where you live? I think I would be very stressed to if I had to go to the hospital....also you shouldn't have got your sub-q any faster then an hr and a half thats the fastest my nurse told me it could be and they have patches to make the redness go away.