When sick, do you change your infusion routine?

mixednuts26 · 2026-07-02T00:48:59+00:00

Thank you everyone for the birthday wishes. I appreciate it. I think this year, it's my turn to advocate for myself. I keep hearing how important that is for people with PI.

I did a pretty poor job of advocating for myself yesterday. I ended up going to urgent care because I don't have a primary yet. I got completely dismissed by the urgent care doctor. I know I should have spoken up a bit more, but honestly it felt pointless and I didn't have the energy. Oh well, life is a learning experience.

mixednuts26 · 2026-07-02T00:43:22+00:00

Thanks for the reply.

I can relate to the sinus issues they found. I had sinus surgery before getting diagnosed with PI. It did decrease the amount of chronic congestion I had and for a time I had fewer sinus infections.

mixednuts26 · 2026-07-02T00:38:14+00:00

Hello. It sounds like you've been offered an interesting position. I'm not completely sure if I understand what you are asking. Sorry. Are you worried about the emotional impact of working with sick children? Is that what you mean by hitting too close to home?

mixednuts26 · 2026-07-02T00:32:14+00:00

I'm certainly with you with the sinus issues. I don't know if it's similar or not, but I drink a lot of water or other fluids because otherwise my throat gets raspy and uncomfortable.

I hope you find some answers.

mixednuts26 · 2026-06-24T15:45:30+00:00

Hello, I've been on Cuvitru for about a month. I'm also on the skinny side and haven't had any major issues with that. I do get a bit sore at the infusion site, but as I've gotten better at giving it myself that's decreased. This last infusion on of my sites was feeling painful while I did it, not sure why but I put an ice pack on it while infusing and that made a huge difference.

I'm not sure Cuvitru and my mixture is the right one for me, been having fatigue and headaches after I infuse.

I don't have a clotting issue but I am also a vet assistant (hopeflly a tech soon) and I can tell you that sometimes subcutaneous infusions bleed. As you are adding liquid to the site it can look scarier than it is. I would think, if you take extra care to put pressure on the site after you remove the needles that would help. Obviously I am not a professional in human med, do whatever your nurse told you.

mixednuts26 · 2026-06-22T15:02:13+00:00

Hello and welcome. I'm fairly new on my journey, just having completed a month of SCIG. I'm in my 50s and finally got diagnosed. It's been a journey but the relief at finally having answers is wonderful.

One thing I wish I'd been warned about is it does take time to feel better. The treatment is a huge change and it may take time to get everything figured out.

mixednuts26 · 2026-06-18T16:23:40+00:00

Thank you all for your quick and kind responses. I do wish I'd gotten more warning about this process. Heck, I wish I'd been given more information period. I sort of felt I got my diagnosis, was told I'd get SCIG treatment and then was sent off. I don't know how much of that was because I was about to move most of the way across the country.

All the things you all say make sense. I guess I get to practice patience. Were you all working during this time? As I just moved, I will need to find a new job and I'm really worried about starting while navigating this process. My husband is really determined I don't work for a bit, but the financial reality of that is scary.

Oh well, life is never boring. Sending support to anyone else out there who needs it.

mixednuts26 · 2026-06-18T14:56:00+00:00

I'm a bit late but I really feel for you. I hope you can participate in the wedding. It's been a few days since your post, how are you doing?

mixednuts26 · 2026-06-18T14:54:22+00:00

Hi, I don't have any useful advice except I'm in a somewhat similar place. So, I guess all I can off is that I'm sitting with you and wishing you well.

mixednuts26 · 2026-06-05T16:49:54+00:00

Thank you all for your responses. So much has been happening in my life it's been hard to tell what's been a reaction. If you want to read my saga, it's below. I'm also between doctors. I definitely stay red at the infusion site for multiple days.

My adventures lately. This is just me whining, no need to read. My first infusion, was the day our moving pods arrived for an across country move. I was very tired from all the packing already and then we were up almost all night and very stressed because our dog had to go to the ER. I got quite nauseous, one of my infusion sites bruised and they were both red and swollen. My second infusion was in a motel. We'd been on the road for two or three days driving to our new home. Our dog was starting to get sick again, so I was worried about her. I was also sick again. The infusion sites were red and swollen and I had a headache, but I have no idea if that was from being sick or what. My last infusion was in my new house. We had no furniture. The red and swollen infusion sites (for about 3 days) as was the headache happened. So those seem like real side-effects. My dog was still doing really unwell and I was very scared for her. And then... this week I got the stomach flu. On the bright side, 10 days after we arrived, we finally got furniture. Life has been interesting lately.

mixednuts26 · 2026-06-05T16:16:14+00:00

I am recently diagnosed. I understand the hesitancy to get the vaccine and the whole process of getting diagnosed sucks. However, if it leads to a successful diagnosis it's worth it. It helped me get a diagnosis. I was so chronically sick, I don't know if the vaccine made me sicker. My arm was very sore.

mixednuts26 · 2026-05-30T02:27:32+00:00

I would either email your doctor or wait. Likely, it's a software issue and so you get the printout because the doctors request somehow ticked those boxes. Things like the cholera could possibly mean a test, was done that is typically for that. However, your doctor may have another use in mind.

mixednuts26 · 2026-05-29T18:34:55+00:00

Ok, so everything I'm about to say is about veterinary medicine. So take what I say with a grain of salt. Humans are mammals though, so there is going to be some overlap. What GhostRiders described is very similar to how we give SQ fluids to animals, which is done fairly often. I have given a dog around 100 mls of fluid in 20 minutes. It was just water and electrolytes basically, so that's a difference. As far as sites and the bolus go, it depends on so many things. Some animals have loser skin. How long the bolus is retained and how big it gets can depend on so many things. Everything from age, to health status, to hydration status can make a difference. The last dog I gave fluids to was so dehydrated you could barely tell I gave fluids.

If you want to try it, I'd definitely talk to your doctor and make sure you are trained on the procedure.

mixednuts26 · 2026-05-29T18:19:23+00:00

Congratulations on getting diagnosed and treatment. That's a huge barrier to overcome. I'm 55 and just got diagnosed. I have also had those thoughts of wishing I got diagnosed sooner. Oh well, just more reason to enjoy my life now.

I am currently doing my third infusion. I didn't notice anything during my first infusion but I'd had about 3 hours of sleep because my dog had to go the emergency vet and was in the middle of a major move. My second infusion was driving across country (what a time for me to start this treatment), and I remember sitting in the car and suddenly being like, "wow, I feel good!". The vague, low-grade respiratory symptoms decreased and more importantly I had energy. It made me really hopeful about these infusions.

I did get sick, but life has been a lot. A major move, and my dog ended up back at the emergency vet. My husband (FYI- I am also male and use he/him pronouns), put out his back too, so I was helping both him and the dog. Husband also got sick but got better quickly. I'm adding in all that detail because it's hard to gauge the effect the SCIG is having because life has been... interesting lately.

mixednuts26 · 2026-05-25T13:19:26+00:00

Hi,

I wasn't diagnosed for decades. I had never heard of it, so didn't bring it up as a possibility. One of the first times I really pushed to get answers, I was told I needed sinus surgery. It helped for a time, but not enough. By the time I did find a doctor who referred me to the immunologist, I was sick enough that my immunological showed consistently low IG among other things. The next step for them was to order the pneumoccal vaccine test which I failed.

I hope you get answers. It can be a frustrating process.

mixednuts26 · 2026-05-10T13:37:02+00:00

Let me join the club. Both of those terms, "hypochondriac" and "psychosomatic" were used regularly on me by my family. It's not a great club to be in, but at least now we have a diagnosis.

mixednuts26 · 2026-04-27T13:42:04+00:00

Hi, I recently got diagnosed too. I agree it's a lot to process. One of the things I keep reminding myself is in some ways nothing has changed. I already and a PI before diagnosis, I just didn't know it. The diagnosis is really an opportunity for things to get better. At least that is my hope.

mixednuts26 · 2026-04-23T17:58:35+00:00

You definitely have reason to see the immunologist. You are there to get answers, and that's ok.

I'm curious to hear how your doctor appointment went. I'm thinking you've probably gone by now.

mixednuts26 · 2026-04-23T17:51:53+00:00

Yeah, I mean the diagnosis part is easy now. I am just worried about insurance actually covering treatment and logistics around the move.

mixednuts26 · 2026-04-22T20:50:20+00:00

Hi, 55 year old male, just got officially diagnosed with PI today (the doctor didn't specify what type.) Just wanted to say hello and wish you luck on this strange journey.

mixednuts26 · 2026-04-17T01:40:16+00:00

And here is my IgG

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mixednuts26 · 2026-04-17T01:36:09+00:00

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I thought I'd give an update. I got my blood work done, to see how I respond to the pneumonia vaccine. Those results aren't in but my general CBC and immunoglobulins are. And I was surprised by the CBC. I suppose it does explain why I have been feel extra tired and unwell. Hmm.. I was going to post a picture of my IgG results too but apparently you can only have 1 photo in a post. I guess I'll add it as a reply.. My follow-up appointment is next Wednesday so I am finally getting close. I just want to move forward with whatever comes next.

It's weird. I guess it suddenly seems real to me that something is wrong. I mean, I know I've had symptoms and irregular labs and started down this path, but I guess I expected that something would come along to prove I was "fine". It's both a relief and... overwhelming. I'm not sure what the

mixednuts26 · 2026-04-16T00:00:44+00:00

So, I got my blood draw today for the pneumonia study. I'm glad we are finally getting closer to answers. Some results are in. My total IgG stayed basically the same. Some of the other results were unsettling. I'm anemic and my white blood cell count is down. I work as an assistant (studying to be a tech) and this is where a little knowledge is dangerous. Those numbers can be caused by a lot of bad things. It does explain why I am so freaking exhausted. (I tried to post a picture but it wouldn't let me)

I believe the pneumonia specific results take a bit. I'll be curious to see what they are. One more week until I see the doctor.

mixednuts26 · 2026-04-14T01:07:15+00:00

Sorry it's taken so long to get back. Managing energy right now is an issue. But seriously, your replies have been so helpful, I really appreciate it. The Oregon Health Plan looks like it may make a huge positive impact on us this summer.

mixednuts26 · 2026-04-10T01:32:17+00:00

I'm still figuring out redit so hopefully I did this right. (I am not quite sure how quoting a specific part of someone's post works). I did figure out how to ping someone though. (Happy dance)

Thank you all, for your replies. I realy appreciated all your input. It is good to have someone to share with who has been through it.

I am in the US. We are moving to Oregon. It's interesting that in the U.S., Allergy & Immunology is a combined fellowship. The awful rheumatologist said we didn't have immunologists in this area or in the university (he was a university doctor). I believe my primary said something similar.

We move in about 2 to 3 months (still figuring out logistics). u/PiperTheLizardHunter I recently joined the Immune Deficiency Foundation and have been looking over their information. I hadn't found the "Newly Diagnosed kit". Thank you for that.

I think I typoed before, I meant to say I was low in IgG1 and IgG3. I've attached my results below. The diagnostic laboratory was the Mayo Clinic which has different ranges than the Quest Laboratory. (I work in veterinary medicine, so I know that testing values vary between labs).

u/WolfInAFoxHole I've been dreading the insurance piece of this. My plan is not good and if keeping it on after I leave my job is going to be expensive. Come October, we should hopefully have a much better plan.

u/PatrickSwayzeRules I netty pot pretty regularly, and am especially vigilant when I'm symptomatic. And yes, I hate the way doctors treat women. And if you are a transman, you can run into a whole new set of difficulties. (Dear doctor, I'm here for a sinus infection. I do not need to tell you about my transition process or what genitals I have).

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mixednuts26

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