UVA said my insurance would cover it but so far they haven’t. I won’t get another dose if it’s not covered
Great, thanks. I haven’t felt this well in months and insurance covered most of the bill. I was really worried that I wasn’t going to be able to afford more treatments. Next treatment Jan 25.
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I’m really happy to hear that your insurance is covering it. 
and that it is working its fabulous blood magic!!
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Gosh, y’all have cheap infusions! My IVIG was $100k+ per month pre-insurance when I was having it done at the cancer center. When Covid hit, my insurance deemed it not medically necessary to have it on site and switched me to at-home. Now I believe the pre-insurance total is around $70k. 
SO thankful for insurance. I only pay my deductible in January and then the rest of the year it is on them thank goodness.
WOW. That’s unreal
Hi All, long time lurker first time posting. Does anyone do twice a month ivig infusions? I’m finding it difficult to cope with only having 11 good days at a time and still trying to ride and compete. I do infusions at home with a nurse and it knocks me out for at least 2-3 days at a time. I constantly feel like I am my disease and can’t live a “normal” life. I’ve had to stop working as they can’t accommodate varying time off for what will be lifelong treatments. Just frustrated and hoping someone else has found a good way to Deal. Thanks All
ETA has anyone done ivig while traveling for horse shows and how did that go/work?
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Mine are every 4 weeks At the cancer centre and I tolerate them well.
But I totally understand not being able to live a normal life. My lungs are in bad shape and I don’t know if they will get any better.
It sucks. I have CLL.
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Have you talked to your doc about switching to SCIG (subcutaneous)? IVIG is typically once a month, though I have friends who do every other week or every three weeks. Most of the IVIG meds have a SCIG equivalent…so when I did IVIG I was on Gammagard…I’ve done SCIG >10 years and have also used Gammagard. Some products you can switch to a 20% solution, so the volume you infuse is less (for example, I do 8g Gammagard - spread over 4 days a week)…which it 80ml. If I used Hizentra 8g is 40 ml.
With SCIG, most people do 1x week…there is one bran Hyquvia which is a once a month option. But 1x a week minimizes side effects (because you are doing a lower dose and can also run it at a slower rate)…most side effect are volume and rate dependent. I actually did daily SCIG for nearly 10 years because I had side effects…my body has finally adapted and I do 4 days a week now. The side effects with SCIG are MUCH less than IVIG…mostly redness/itching at the infusion site. Depends on the volume you do per month…some people on IVIG for neuromuscular conditions have too much of a volume to make SCIG worth it.
The bonus - you do it all yourself…at home…travel (I’ve infused in multiple countries!). You may also want to look into FMLA for infusions…they have to give you time off for medical treatments so you get some job protection without using all of your sick time.
There is a really good website…primaryimmune.org It is geared towards people with PI conditions, but since our main treatment is IVIG/SCIG there is a lot of information on those treatments. Some people also need a brand switch. I am very allergic to Hizentra and Privigen…but do fine with Gammagard. While switching a lot is not recommended (as that can trigger reactions), sometimes a switch is necessary.
Thank you, yes I have tried sub Q which for me was horrific. Tried it for over 9 months even reducing the volume to 2 grams x5 days and it was still awful, areas stay very swollen, red and itchy for days with as little as 1 gram.UGH Tried to do ivig once a month but even going slowly I couldn’t tolerate it, so that’s why twice a month, yay me ! I use pre and post meds of Claritin, Tylenol and prednisone. I’m currently on gamma guard but I have tried 3 or 4 other brands and this seems to be the best fit, The drs think my numbers look good although still having to use occasional antibiotics, they see I’ve fed and watered myself and have a decent turnout so that’s a good enough quality of life for them.
Primary immune and the other PI groups are good for some information but I guess I think I get viewed as whining when I say treatment interferes with horse riding, they don’t understand what physicality it takes and how difficult it is when you lose the ability to participate.
I’m just frustrated annoyed and feeling incapable which for a chestnut mare is Unacceptable
So the swelling for a few days with SCIG is normal…it takes time for the fluid to absorb. I tend to get some itching (even after 10+ years) while infusing, but generally don’t get to red. I actually never infuse into the stomach due to the discomfort with the fluid there…I use my hips and thighs and arms and those areas seem to be less sensitive. Did you do Gammagard for SCIG or a different brand? When I went from GG IVIG to Hizentra SCIG, I immediately broke into hives and had to stop. So, make sure they are using the same or matched brand.
For me, the swelling/itching was a much better side effect to manage than being stuck on the couch after IVIG…I kept getting aseptic meningitis, each time worse than the time before. So my option was SCIG or nothing!
Yeah my swelling was really really bad, couldn’t wear pants or put on a seatbelt for days, even a t-shirt touching the area was awful and sneezing sent a paralyzing thunderbolt of lightning throughout my body, it was so bad I can’t imagine I would ever try it again. I have tried different brands & different premeds all trying to get sub Q to work. The only sites they say I should use are stomach or my backside and considering side effects neither are acceptable. Their best guess to swelling and reactions is that I have an inconsistent fat layer that doesn’t allow for proper absorption and it just sits under the skin. I really wish sub Q had worked for me as I do better when I’m in control of my medicating. Gets really frustrating when it’s hard for nurses to keep a regular consistent schedule, like this week it was always supposed to be Monday then he moved it to Tuesday, ok I can be flexible with holiday and all but Now it looks like Friday. I just don’t feel like I have any control and it’s frustrating.
I am surprised they suggested only stomach and backside as sites…unless you have other medical issues that eliminate other locations. Some docs/home infusion nurses are not well versed in SCIG options and so they put unnecessary restrictions in place that don’t make any sense at all. Needle length can also have a major influence…they initially had me doing 8mm needles…ouch. It hurt and burned all the time. I’m athletic build and from riding I figured maybe I didn’t have as much subq fat in the infusion locations (though I have some fat in other areas I would like to shed! LOL). So I went to 6mm needles and what a difference! Most docs only use 6mm for kids…so had I not asked to try them, I would still be dealing with the burn of infusing in the muscle layer. It takes a lot of trial an error.
For your IVIG, how many grams and how fast do you infuse? That could play a role in the side effects you are getting. When I was on IVIG, I did 30g…and we had to dilute it to a 5% solution and run it over 8+ hours…plus a bag of saline and a dose of IV solumedrol before. But I had pretty poor tolerance for IVIG!
And, maybe time to change infusion companies if you are having a lot of scheduling issues with the current one?
I have withered away to nearly nothing so stomach and backside were only sites with any fat, thighs and arms have nothing extra. The dr is very highly regarded and also treats children so I have tried different needles etc. Right now I’m using gamma guard 20g every 2 weeks, start at 5ml/hr and increase slowly to 40. So each IV infusion is about 5+ hours, any faster makes things much more intense during and after infusion. I use Claritin Tylenol and prednisone before and after. I have been through so many nursing companies especially during covid……but even when I used to go to drs infusion center there were last minute changes, like I’d show up ready and prepared and they would have to reschedule. The reason I’m on this is I don’t really respond to vaccines, a sub class deficiency with absolutely no pneumonia protection and the biggie for me is no tetanus protection, I wound up in the ICU for 5 days and another week in the hospital with full blown tetanus, less than a 20% chance of survival, medivacced from one hospital ICU to another because of seriousness. That was a doozy and probably the only reason I keep trying to make this treatment work. Please anybody reading this stay current on your tetanus vaccine, it is a horrible horrible thing to deal with. I had been vaccinated 3 times for tetanus in the preceding 5 years and it didn’t help me when I got punctured by a hook at the barn. Thank you for sharing your experience and tips, it helps to know there are other horse people who have struggled with treatments and found a way to have and enjoy life.
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Sounds like you’ve tried most every option. I have CVID - no IgA, nearly no IgM and low IgG…also low memory t cells. I will say part of having to deal with a PI is feeling pretty crappy most of the time. Fatigue and pain come with the territory, and sometimes the medical field does a crummy job addressing those issues.
Please don’t take this the wrong way, but maybe talking to a counselor who has experience with chronic disease? I only say that because I know when I was first diagnosed, I definitely went through anger/denial/depression about dealing with the diagnosis, lifelong treatments, etc. Sometimes, being able to talk to someone about the issues that come with chronic medical issues can be a help…even if it doesn’t fix the main issue. I have a close friend with the same condition and we talk/problem solve often…just to help each other sometimes keep perspective.
Maybe it’s working to give yourself a bit of a break…some days I just do easy rides, because I know I don’t feel good enough to do a training session. Sometimes they get a day off because that’s okay too. And my one gelding is FEI level so we stay in a pretty intense training program (until his ultrasound yesterday showed a small tear in the branch of the suspensory so guess we are both getting some time off). Sometimes it is about finding other ways to control the situation however you can!
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So sorry to hear about your gelding, hope he heals fully and quickly. Spent all day at Moffitt with my cancer drs and they have recommended looking at palliative care for chronic illness to maybe help better coordinate with all my drs about all my various treatments and side effects. The hope is with somebody overseeing the big picture maybe I can achieve a better quality of life. Fingers and toes crossed for getting more control and balance.
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That sounds like a good plan! You need someone who can see the whole picture and help advocate for you. And keep advocating for yourself…if you are not happy with your current quality of life, keep asking questions and pushing for your docs to brainstorm a better plan. I know I did that just recently and am now headed back to the NIH for a new clinical trial. But had I not gotten fed up with my symptoms and continued to just accept them…then my quality of life definitely won’t get better. Glad you will be getting some more help! Fingers crossed for you:)
