I would think an immunologist who specializes in PIDD would be your best bet Briggzie. I got my ivig treatments for a year before finding one (my internist and an infectious disease doc diagnosed me and started me on IVIG).

Sub-Q is weekly ig that you administer yourself at home. I don't do that, so I can't really speak about the benefits of it. Some of the people on the board here can tho. Did you know that you can get your IVIG at home through a specialty pharmacy? I don't do that either, but I could ... I just don't choose to at this point in my treatment. Again, there are others here on the board who do and who can give you info on that.

Whatever you decide ..... best of luck to you! I'm sure you'll figure something out to make this whole process run more efficiently.

Your hematologist sounds very accomplished and I'm sure he knows what he is doing, but I would see an immunlogist as well. Normally, I believe most CVID'ers are treated by immunologists. Who knows you could end up receving your infusions somewhere closer to home. Do you drive 2 hours just one way?? Try to find someone closer.

Many patients go the subQ route, but I am perfectly happy with my iv infusions. I get to see my immuno once every 28 days, he fills me in on my blood work and lets me know if he spots anything new, he will do extra testing if I am experiencing new symptoms, and I like him. It is a safe place, I have gotten to know the nurses and we have it down to a science now. I am usually in and out of there in about 4 hours. For me right now, it is the best.

I can't imagine doing the subq with little kids around, but one of the other patients could better advise you on that. I have no experience with it and would not want to steer you away from it unnecessarily.

Good luck, whatever you end up doing. I just know that if I were you I would try to get away from the very long commute if you can and definitely see an immunologist.

Keep us posted.

It takes me 2hrs one way. I either have the option of going to Rochester NY to or Robert Packer Hospital is PA those are the major hospital around here. ( both are about 2hrs each way) My treatment at the moment takes 4hrs but for me right now it's an all day thing with driving time. I do see my doctor while I'm there and any get any needed tests including monthly blood work to make sure i'm not in liver or kidney failure.

I just am trying to find my balance and a routine that would work for my life schedule.. This is so hard..

I have been diagnosed since 1991. I started out with IVIG and it made me so sick it was an all day affair and often I had to stay in the outpt unit overnight. I am from Indiana. We had no immunologists until 2004. I see a hematologist at IU Medical Center. His primary interest is PIDD. I was on a study for Hizentra, the subq gamma globulin. I love it. I am no longer sick during an infusion and have had 3 infections in 6 years.None required hospitalization. I don't have to take all the premeds. It takes me under two hours. It also keeps my IGG levels at a steady state. I used to get sick because the last week before my treatment it would wear off. Now I have none of that. I only take a Benydryl at the end for the itching at the subq sites. Good luck on your treatments. I think you are most likely ok with the hematologist. Especially, if he or she is at a big medical center.

HI there and welcome! I am a single mom dx with CVID in 2008 and had my first IVIG in 1/09. It made me sicker than a dog and bedridden for 3 days. 2 years and 4 Ig products later I found Gamunex. ZERO side effects and only took 3 hrs to infuse vs 6. I was just getting ready to go to home infusions when the new doc switched me to subq. Let me tell you, my levels doubled in one month. It was a little tricky at first. My daughter is 7. I let her come in and flip the instruction book pages, but then she would be in and out, totally distract me and I got uber stressed. Well, once I got the hang of doing the subq, she can come in and blow off a bomb and I wouldn't notice lol! My thing was I was too sick to take care of my daughter on IVIG. Subq takes about 3 hrs total for me, but its in a little fanny pack, the pump, so once the needles are in, I go cook dinner and chill and watch a movie with her. Point is I am with HER. Oh and the no side effects is awesome....no spinal migraine, body feeling like it got hit by a mac truck, nothing! And super easy even for the squeamish :) 4 little tiny needle you put into your tummy or thighs, turn it on and off ya go. I even went to Kohls once with it haha! Good luck, you found a great group...ask us anything :)

I have a mild case compared to what I have read on some of the blogs..

I have reoccurring stomach issues that have similar symptoms as chrons. the instant diarrhea, pain, cramping, not sure what foods are safe from day to day..
breathing issues which doctors thought was asthma but since I have been on ivig has pretty much gone away.. Also have no energy.. I get really bad sinus infections, bronchitis etc.. takes 2-3 reps of antibiotics to get rid of it... my immunoglobulin levels are almost nothing..
the IVIG does a great job.. a week before treatment i can feel the drop and feel yucky... but other wise have been good. I have only had a couple infections since I have started treatment.
My doctor has never mentioned other treatments like sub-q or i have read there may be shots??
Does anyone know what the criteria is for the sub-q treatment?
My closet immuno doc is about 2 1/2 hrs away for Pidd.. I'm gonna make a call and see if i could been seen for a consult and just see what recommendation they have. I just want to make sure i am doing all i can for me and my family.. I think my 2 little girls may also have issues with their levels and my sister and mother are also being tested they all have the same symptoms.. my doctor said it's unlikely to be hereditary but i'm thinking other wise..
Thanks everyone for your input!! I really appreciate it..

I have my IVIG at home. It works really well for me. You may want to see if they can come to your house to do the infusion. It may work out well if you normally have your children in day care since it could be done while they are away. Mine is done while the kids are in school.

Maryiln,
is it a public nurse that come sees you or a nurse that is specialized?
I just am afraid that if something happens (reaction) they are not gonna be able to know what to do locally or at my home town hospital. It probably sounds dumb but i'm in such a rural area.. And my local hospital to the point just really sucks...

There is really nothing that "qualifies" you to receive subq. I would look at it a couple of different ways when trying to decide:

1. Do you have bad side effects from IVIG (I had horrid side effects)
2. What is recovery time from IVIG (mine was 2 full days totally bedridden)
3. Will it save time or give you more time with family? Better quality of life? (My ivig's took 6 hours)
4. Will it affect you financially? (do you have a copay? subq is less expensive).
5. How often do you want to be reminded about your disease? (IVIG is once per month, subq is once per week)

You can have a discussion with your doctor and list the reasons why you want to go to subq. Back in the day (not so long ago) it was reserved for people with bad veins and such. Now, very often on here, we see people out the gate starting on subq. You get higher, more consistent IgG levels on subq and none of that 4th week trough, fatigue, infections that you experience on IVIG. I'ts all really a matter of preference now :)

It is an infusion nurse. She goes from house to house doing different types of infusions. I am not her only patient getting IVIG but she does other infusions also. I will tell you that I don't really like my nurse but I have the right to ask for a different nurse. I just have not done so yet. She does not like to use an infusion pump but can not accurately tell me the rate of infusion without one. I asked for and received a pump that stays at my house that she is required to use. She hates the pump but that is not my problem. Others absolutely love their home nurse. My dh is here with me during the infusion and that helps me feel better. If you are not making any changes in your medication and you are happy with how you react to the IVIG then I would look into the possibility of having it done at home. If you ever need to change your prescription you should have it done at the office the first time or two.

I would also think about how it would effect your child if they are at home during one of your infusions. Some people think their kids would not do well watching an infusion. My kids, 10 and 7, have actually become more comfortable with my disease since seeing the infusion and understanding what is going on. You know your children best.

thanks ladies..
I think i will have a discussion w/ my doc..
my 4year old i think would be fine with the infusion. She is very smart and asks me tons of questions about everything and anything..
I also think it would give her a better understanding..

Hello briggzie.
Just thought I'd add my two cents regarding subq.
My 10 y.o. daughter was dx'd with CVID last Spring. We started with IVIG 1x/month, which she tolerated well. But we also had to travel about 90 minutes into Philadelphia. The whole thing took all day and my daughter hated missing school and camp.
We made the switch to hizentra and it was great. Of course the first couple of times were a bit overwhelming. We had to have the first dose in the hospital day unit (same place as IVIG), and then had a nurse come to the house the first time we did it ourselves, but now it's a breeze. We can do the whole thing in about 75 minutes and it's completely stress-free. And I love that we can do it on our own schedule so she won't have to miss anything fun. That kind of flexibility would be great for you as a mom.
She also has had no fevers since starting subq and when we checked her IgG level, it was great.
I've heard that others have had problems with insurance coverage (some insurances feel it's a 'pharmacy' cost), so I would check with your clinic and make sure that it gets pre-approved before you dive in. We have been fortunate and all the costs have been covered by our insurance company (so far).
Good luck.

kathy,
thanks so much that helps allot..
I go see my doc on the 24th for follow-up and treatment.. I am gonna discuss it with him. with it being winter and also the mom thing I think it would be much easier to do at home..

Thanks everyone for the support and info..

Brigze,
You said, "I just am afraid that if something happens (reaction) they are not gonna be able to know what to do locally or at my home town hospital."

I have been on home therapy for over 25 years, 300+ infusions. My nurse and her company , who just do infusions had done over 5000 infusions. She has never had anyone go into anaphalactic shot, the only conditions that would be an emergency situation.

It is the same condition that someone gets if they are allergic to bee stings and they get one, or if they are allergic to peanuts and eat a peanut butter sandwich. in other words, I'm sure your local hospital and local ambulance service know what to do. Moreover, you will have all of the medications a hospital would use in your personal supplies at home.

I think having my own personal nurse at home would be more on top of my condition that were I in an infusion center where a nurse takes care of 5 or 6 patients at a time.

Finally the literature shows that 90% of major side effects occur in the first few infusions.

I am a great fan of home therapy and would recommend ti to anyone.

Marilyn said, "I would also think about how it would effect your child if they are at home during one of your infusions."

I have a 19 year old daughter and a 22 year old son. My kids both have CVID and have seen me having my infusions at home their entire lives.

I can tell you it definitely effected them. My daughter is in the school of nursing at the University of Pennsylvania and my son is a paramedic. I think it effected them positively.