Hi Tammy, and welcome to the group!

We have a post in here somewhere that has a bunch of links for info on CVID. I think it's called "Important Resource Links" or something like that. You can find a ton of information there!

We talk of SubQ pretty casually here, so I'm not sure whether it's been explained. In case it hasn't, it's a form of IgG that you can get in fatty areas of your body. I believe it's usually 2-4 small needles (4 - 12 mm long depending on your body size), and the infusion happens at a set pace (no adjusting pump speed). There are supposed to be fewer side effects from it than regular IVIG, but you have to do it every week rather than every 3-4. CVID is for life, and your antibodies will die off over 3-4 weeks, so you will always have to have your treatments.

Yes, this can all be part of your CVID...Hugs!

I had plantar fasciitis in my foot too ... BOY is that a frustrating condition!! I actually had it prior to my CVID diagnosis, but I feel it HAS to be linked to my condition. In any case, after several treatment attempts - injections in my heel, etc. ... I had my foot put into a cast for a month, and this is what did the trick. But the entire process was LONG and agonizing (about 8 months). So, I can empathize with you. I also have joint pain .... the majority of which is in my feet, ankles, hips and lower back ... and now my shoulders too. Saw the rheumatologist, and nothing has shown up to be a cause. I am very frustrated.

Oh,, by the way ... WELCOME to the group! It really has been most informative to me ... and I hope to you too!!

i have plantar fasciitis also i wear braces daily for it best thing ever! has really helped. the braces are to my ankle and are open toes that fit in my shoes. i lace them up. i can only wear tennis shoes but my ft dont hurt all the time now have had them for 6 yrs now.

sorry...
welcome!

Thanks everyone! MiMidge, those are the same spots that bother me. I used to be a runner, but I can't anymore because of my ankles and I've developed bone spurs at the base of my big toe on both feet. I have to have surgery on my left foot. I kept chalking it up to getting older, but I'm only in my 40's.

Princess B, thanks for explained what Sub Q is. So does it hurt when you put the needles in? How deep does it have to go?

I'll find out this Friday and let you know... :)

Welcome to our family!!!

I did my first subq last friday and it does not hurt. Feels like a little pinch. The needle is itty bitty :) Because they are so small you can only stick them in so far. Then you tape them down throw the pump in your little bag and go cook dinner lol. Or chill and watch a movie. It itched a tiny bit but it was really easy!

There are lots of things that happen with CVID. I've found lots of people that had ITP way back when. I actually had to get my spleen removed as they didn't know then that I had CVID. IVIG was a life saver for me. I'm very lucky as I rarely ever get sick anymore and I didn't get the tummy troubles either, just the arthritis. Ask away. Everyone here is amazing and all have stories and what works for them :)

I'm only in my forties too ... but most days I feel like I'm in my eighties!

Yup...I'm in my 40's too, some days I feel 100, others I feel 17...I usually don't feel like 40's though. :P

46 going on 90 most days!!!

I'm 62 years old and been in IVIG for over 25 years.

Regarding your 8 week IviG schedule, The American Academy of Allergy Asthma & Immunology (AAAAI) says, Frequencies of IVIG infusions of greater than every 4 weeks have not been adequately studied

Using infusion intervals longer than every 4 weeks is not recommended in any of the FDA approved licensing materials and would be consistent with medical malpractice."

I'd ask you physician to back on a 4 week interval. If you are not having a lot of infections, I'd recommend reducing your dose rather than infusing every 8 weeks.

My other recommendation might be for you to consider adding see an expert clinical immunologist who sees a large population of PIDD patients to your medical "team".. Ours is a complicated condition and I believe the physicians who see a lot of PIDD patients are more equipped to treat us. The IDF can recommend one. You might have to travel to see one, but I believe it is worth it.

OMG!! I can't believe that the plantar fascitis could be part of the CVID. What a revelation. I have just recently been struggling with this. It is horrible. Just within the last month or so it has mysteriously appeared with a vengance. I also have a bad knee now and with the heel pain I can barely walk. I figured the knee issue is part of the CVID, but never made the connection with the heel pain.

I love this Board and all you guys. What a great source of information and comfort to share our experiences. At my last infusion my immunologist told me to see a rhuemotologist as soon as I could. He is not typically very dramatic about things, but this stood out. He has always asked me 'how are your joints?'.. which in the beginning I thought was silly. Little did I know what I was in for. Just in the last year I have come to understand why.

btw, Tammy I have always had all of the gastro issues. In fact, before I got diagnosed, thank God, I had every possible test and treatment for IBS, ulcers, food allergies, and on and on. I had 5 colonoscopies and endoscopies galore. Once in awhile something would show up positive on a test, but usually not. I even had my gallbladder removed in hopes of solving my problems. I felt completely hopeless that anything would ever get better. Then I finally got my diagnosis and finally started to understand what was happening.

I am glad you found this site too. It is so reassuring to know that you are not crazy, and there are some answers and some help for all of these wild things happening to your body. CVID is truly a systemic disorder.

Welcome to the group!