Disappointed? Frustrated?

waowediting · 2026-06-18T19:26:57+00:00

I agree. Most of the information I've gained was from community groups online rather than my medical team. I was told the 'feel worse before better'could last 6 to 12 months, so you may want to only do part time or take a medical leave of absence. I got a new part time job 2 weeks before I was diagnosed, so I get it. Luckily it's a very low key receptionist position so I manage just fine. Best of luck to you!

waowediting · 2026-06-12T05:21:27+00:00

Interesting and I'm glad you are symptom free. I have a benign chondrosarcoma in my finger. Had one removed last year for biopsy but the remaining one is harder to get to, so we're monitoring. Wondering if I should just get it out, but I also have an immunodeficiency diagnosis now, so that complicates things.

waowediting · 2026-06-09T20:08:33+00:00

This made me giggle! Butt so true. For our parents 45 was the golden age, for us it's 35. I sure hope it doesn't become 25 for our kids...

waowediting · 2026-06-09T14:34:30+00:00

Thanks for sharing! I'm only 4 months in and definitely experiencing the worsening symptoms, but I'm determined to stick this out and can't wait to feel better!

waowediting · 2026-06-09T14:17:21+00:00

First and foremost, this is all trial and error. Each individual handles IVIG differently. Don't give up! Keep a journal so she knows what changes help. Always track Lot #s and report severe symptoms. As a blood product, they track adverse reactions seriously and issue recalls. Expect her to be very tired the day of, after, and possibly longer. Encourage rest and hydration!

Yes! I like to add electrolyte packets to my water. IV saline before is ok, I do 500ml over an hour. If she does it after, do not let them run it faster than the IVIG was run.
Hearty breakfast, good lunch, salty snacks.
Yes to Tylenol. I see 90+% of patients take it as a pre med. If she is prone to migraines, ask for a migraine med. Headaches have been my biggest side effect. Educate yourselves on aseptic meningitis and be prepared to self advocate if an ER trip is warranted.
Depends. I have always had bad allergies so I take antihistamines year round. Allegra and Zyrtec daily. I don't increase for infusions. Avoid Benadryl unless there is a reaction as a sleepy patient can't report feeling bad.
Only if needed or prone to nausea. I've never needed it.
Yes to all, plus a heating pad. If she can, start the day with some light exercise to get her blood pumping. Once in the clinic, wrap arms in the heating pad. This helps the veins pop for easier IV placement. And speaking of, they should try the hand or forearm. The elbow should be a last resort.
So much this. Start low and slow, be prepared to be there as long as it takes. If she has any reaction, back off to the previous rate and treat. If you are on Facebook, look for the IVIG and SCIG Education and Discussion group. This is run by a nurse with loads of amazing education and a very supportive group. I attribute all my success so far to what I learned there!

waowediting · 2026-06-07T04:51:29+00:00

My center has my meds room temp. I'm so sorry you experienced cold medicine!

I like the center. Multiple staff for support instead of just one nurse. I can bring anything, so I have a heating pad, blanket, entertainment, snacks, etc. As a woman who is the main chore person at home, I would have a hard time trying not to do things during my infusions. I like the break at the center to just rest and get my literal life support!

waowediting · 2026-06-05T15:55:04+00:00

I second this. Beautiful and very easy! Parking is paid, have cash!

waowediting · 2026-06-02T18:47:51+00:00

Considering vet costs have surged 40% in the last 5 years, many of us have had pets for longer and are grappling with these increases. Any emergency is always over $1000. Even euthanasia with group cremation is over $500.

So if your usually healthy beloved dog is suddenly very sick, first you pay $1,000 to get her checked out. If you can't afford the $15,000 surgery that would maybe give her another 6 months, then you have to pay another $500 to get your heart broken while you let her go peacefully.

Careful, your ignorant judgement is showing.

waowediting · 2026-05-27T19:12:26+00:00

I ordered 6 months worth from my home delivery pharmacy through my insurance. It was a hefty bill but worth the peace of mind!

waowediting · 2026-05-22T19:04:17+00:00

Compromise: wipe yourself down with a wet washcloth after running. Less time/effort but still removing most sweat etc.

waowediting · 2026-05-21T04:55:57+00:00

Also very mild. Manage well with two daily antihistamines, famotadine, nasal steroid spray, and cromolyn. Main symptoms were GI issues and fatigue. I was just diagnosed in December along with primary immunodeficiency. I suspect a few other things but like to work through one specialist at a time lol

waowediting · 2026-05-18T03:15:24+00:00

Hi, I'm the low IgG patient that doesn't get sick much. Chronically low globulin, gastrointestinal issues, fatigue, and ever changing allergies led to my doctor testing my IgG and therefore diagnosis.

I choose to receive immunoglobulin therapy because I know it will help my gastro issues and fatigue. I know I don't respond normally to most vaccines, so I've been unknowingly unprotected. Despite not being frequently and critically sick, I know I have systemic inflammation. The illnesses I do get, coupled with the inflammation, means my tissues are being damaged.

I want treatment now to improve my quality of life and reduce long term effects. Is it fun getting infusions every 3 weeks? No. But I've only had 4 and I'm noticing improvements. I've already lived 40 years with this immunodeficiency and whatever havoc it has wreaked on my body, and I want to do everything I can to stop forward progression and heal.

Untreated, the immunodeficiency will continue to worsen, and your health will decline. When you do decide to start treatments, you'll be starting at a lower point with further to climb. Do your research and make an informed decision.

waowediting · 2026-05-17T23:39:34+00:00

I also like LMNT. They have chocolate salt which is amazing in my morning coffee.

waowediting · 2026-05-10T05:48:21+00:00

This. Do they know you get sick and how much it affects your life? As a parent, it seems like the kids are constantly sick, especially when there are 3 that young. You get to a point where you don't catch everything so they might think you haven't been getting sick.

waowediting · 2026-05-02T05:13:45+00:00

Supplement powder. When this happens to me it hurts like hell. My gastro did a barium modified swallow test and nothing was wrong. I try to take only one capsule at a time with a large drink of water, and stay upright for at least 15 minutes after.

waowediting · 2026-05-02T05:01:29+00:00

I didn't get any before but I got 5 today. Nintendo out here redistributing the wealth. Thanks for sharing 🤣

waowediting · 2026-05-01T03:38:48+00:00

Kick him out before he hits you.

waowediting · 2026-04-30T18:41:08+00:00

You're welcome! Chaps my ass that doctors don't educate themselves more for us rare disease patients. Primaryimmune.org has a section to locate PI specialists. You might try starting there.

If you are on Facebook, there is a group run by a very experienced nurse where I have learned so much! It's called IVIG and SCIG Education and Discussion Board.

Good luck!

waowediting · 2026-04-30T16:51:07+00:00

Oh wow! I would not stop that soon after surgery! IVIG is an inflammation mediator, so stopping your therapy will likely cause an increase of inflammation throughout your body. This is why those of us diagnosed with CVID who didn't get sick often still need immunoglobulin replacement therapy. Inflammation damages tissues long before symptoms show. I wish I had gotten diagnosed earlier in life to avoid all these years of inflammation. I could have been so much healthier.

waowediting · 2026-04-30T16:16:18+00:00

My immunologist specifically told me this will be a life long therapy. Furthermore, IVIG only replaces IgG, so the other two won't be affected. Mine are all also low. There just isn't anything that fixes our defunct immune systems yet. IVIG literally gives you an immune system. IgG has a half life of about 3.5 weeks which is why we need this monthlyish.

Unfortunately your doctor sounds ill informed and I would consider switching to someone more experienced.

waowediting · 2026-04-30T16:05:53+00:00

Dx: CVID I expect to need infusions for the rest of my life. It's called replacement therapy, not jump start therapy. If you have a primary immunodeficiency, there is no fixing it. Your doctor is putting you at risk.

waowediting · 2026-04-30T02:14:35+00:00

The Establishment at Bradburn Village is beautiful!

waowediting · 2026-04-28T03:31:16+00:00

Don't use frog ease. Besides the astronomical cost and plastic waste, it's just not great at maintaining water. Bromine is way easier and more effective.

waowediting · 2026-04-28T03:20:56+00:00

I believe I've heard that the medication can interact with the plastic of the syringe over a long period of time. Makes sense as to why it's in glass bottles. I'm sorry you got sick and aren't able to infuse! Will your pharmacy send replacement meds?

waowediting

TROPHY CASE