I have talked to probably 1000 people and I have to say infusion speed is the trickiest thing. Although 3.5 hours is a standard starting dose, the majority of people have to stretch it out because it causes side effects such as migraines. Please discuss with your doc trying it at least once, slowing down the infusion to a much slower speed. Out of all the people I talked to and know, I only know 1 person who can do it that fast. You're hydration sounds like you are doing good. Keep it up after the infusion too. You can go through years of posts on here regarding infusion speeds.

Thanks Kelli I have an appt to see Immuno prior to next appt. I wrote down all meds/hydration for the days post infusion so I will share that with him. I will suggest slowing it down because I am basically doing everything else on the post infusion checklist including oral steroids. I felt good yesterday but I do to much activity and wiped myself out. So went to bed early and will take it easy today. I did not have a headache yesterday just felt some pressure in my head and neck so was surprised I didn't have a headache. I will search through old posts about hydration, thanks!

Visit with Dr. Went well. I am going to switch to SQ!! So excited to have more control over my infusions. I go to same infusion center for first time to learn how to do it. He said I would start out at 20-30g sq. I think maybe he reduced it because my description of post infusion headache sounds like aseptic meningitis. I have taken notes on Kelli's posts about flow rate tubing and will take it to the infusion center. They also mentioned hizentra as a possibility if sq gammunex c doesn't work. So feeling very good about this. Thanks for all your support.

That's awesome. I've done about 3 or 4 brands of subq. I remember being super overwhelmed on my own at first...fast forward, my kid sets them all up for me HAHA. I actually recently switched to HyQvia as I was simply just too dang busy to be doing them every week. Compared to how sick I was on IVIG, subq was a game changer for me. Good luck!

Had my first sq infusion today. I'm sticking with the gammunex. Put the needles in myself and received 30g. Belly a little swollen but not bad. Used the f900 rate tubing. I requested slower rate tubing for next time. Go back in 2 weeks to see dr. Again. Then I will be doing sub q at home every two weeks.

Wow that was a fast tubing lol we all tolerate different speeds so if you don't get any side effects stick with what works! So glad to hear it went well. I love the freedom of subq!

I asked for slower tubing for next time, when I do it at home. F600 is what I should be getting when I pick up supplies next week. Yeah they don't seem to get that not everyone wants to slam it in there body! I did ok no headache was tired and took a nap . With IV wasn't able to nap felt so weird afterwards. My belly is bloated and a little sore but hopefully with going slower body will adjust.

there are little tricks you learn along the way, slower tubing, ummm heating pads (helps absorb faster so reduces the swelling), benadryl for site irritation...lots of tricks out there. YOU are doing FANTASTIC! Seriously. Great advocate for yourself. Coming right along :) I expect you'll be off this board in no time :)

Had another follow up appt with my Immuno. Asked lots of questions that I had written down,so I wouldn't forget. Started some new meds for headaches because get them at least 3-4 days a week and he said new research has shown uncontrolled headaches in women can lead to dementia/Alzheimer's, basically brain damage. So I don't need that on top of everything. Started that yesterday....so far so good. Got supplies for next 2 infusions at home F180, f600, f900 tubing. Think I will do f180 for this next infusion and see how it goes. Used f900 for the first subq infusion and was pretty bloated and headache the next day.

I had another follow up appt with immunologist. He has asked me the last few visits about when I plan to go back to work. I have been staying home since daughter was 3-4 months old. This time I responded that I had applied for a part time job. Basically he offered me a job working for him. I am excited for the opportunity and hope I can be a good advocate for my fellow zebras.

Fantastic news!!

JenBeth81,

Welcome. So sorry you had to join under these circumstances. I am new to this group, but not to CVID & AI.

I have Sjogren's (Sho-grins) Syndrome and some over-lap symptoms of RA. The gold standard for Sjogren's, and some other AI issues, is Plaquenil. Some say Plaquenil is a mild immunosuppresant, while others say it is not. In any event , it is prescribed for many AI patients. It can take up to 6 months to work, work immediately or not at all. Everyone is different. And of course IVIG replacement. I give myself Sub-Q infusions every other week.

My Immunologist thinks that my CVID caused my AI issues. I think the statistic is something like 20 ~ 30% of immune deficient patients get an autoimmune condition or more. If you are a nurse, you probably know that it is not uncommon to have more than one AI condition.

Please know that depression can be an organic symptom of AI diseases, as well as situational from the day to day stress of dealing with chronic illness. I have been on a Sjogren's Syndrome Forum for a long time, and would say that the majority of members on that site, all have anti-depressants prescribed.

Try to stay positive. Things that have helped me: I started a Sjogren's Syndrome Support where I live in Pittsburgh. I volunteer for the Sjogren's Syndrome Foundation as an Ambassador & local contact to speak with patients about Sjogren's.

I also discovered writing. I was tasked with writing a blog at my business and didn't even know what a blog was? I didn't want to embarrass myself within my industry, so I decided to write about my journey with Sjogren's. I fell in love with writing & find it very therapeutic. I also just created another blog for my general writing,.I have found that helping others (with my writing, etc.) helps me to step outside of my whiny self and focus on others.

Be kind to yourself. I think that there is a tendency for chronically ill patients to beat themselves up or feel guilty for what they are unable to do. The reality is..that it is what it is. We have a limited amount of energy... (google Spoon Theory). We didn't choose to be ill, but it is now part of our journey.

One thing that has also helped me a great deal is that I decide and declare each day...that I will not let my chronic illness define me. Illness is not my new identity and I will not let it win. Do I have my pity parties? Absolutely..you can read about them on my blog.

The message is that you can have a perfectly nice life in spite of CVID & any other diagnoses that come along for your ride. Just research and experiment with treatment approaches that may help (such as diet, supplements & the right meds).

I wish you luck in the process of nailing down the entire picture & establishing docs that you like & they treat you well. I have had to dissect my fair share of docs until putting together my dream team.

One day at a time. It is overwhelming at first...but you will come to a place of acceptance and symptom management that works for you.

Take Care.
SjoDry

Aghhh...just realized the date on your initial post. My goodness, you are way beyond just being diagnosed.

Hope all is well.

SjoDry

Thank you so much for your post SjoDry. Your post made me tear up and was very helpful. My Immuno said that many are diagnosed with autoimmune issues before the cvid diagnosis. I started plaquenil prior to dx in November. My dr seems pretty aggressive In treating things. He also told me I wasn't crazy ( I may be a little bit) I do feel like it helps a bit. I mostly haven't had many symptoms of autoimmune disease. Some joint pain that seems to come and go, some muscle weakness, etc. I am also on an antidepressant that we tried for my headaches and I haven't stopped taking. I think it helps some. I also think part of it is me in that I am a private person and dont like to clue anyone in to how I am struggling. But I am working on that.

Definetely trying to be positive. I have gone to Idf meetings for support. I have heard of the spoon theory and have posted it my Facebook. I even have used it to explain to my husband and some family members. It's hard because I think they still don't get it sometimes.

I have thought of starting a blog but have no clue how to go about it.

I was diagnosed June 2015 with CVID. Been getting IVIG 7 months but recently switched to Hyquvia. Severe fatigue and still getting infections. I read from a member here that perhaps it is possible to ask for greater amount of medicine to increase ig levels. Mine stays at 900 since I began treatment. Was 560 before. Is it possible my dose increase may help with fatigue? I just signed up here on this support group in hopes of getting feedback. I like how everyone listens and offers help on this site. Thank you.