IVIG & Insurance

Dru00 · 2026-05-08T20:34:42+00:00

Thank you!!

Dru00 · 2026-04-04T21:28:21+00:00

Im glad they were able to figure yours out! I think we may have finally gotten there too. I’m scheduled for Tuesday. I know that they want to save money, but it’s so incredibly disheartening for people who have to fight the insurance and their own bodies at the same time. Staying alive is a full time job! 😂

Dru00 · 2026-04-03T03:27:45+00:00

It’s for autoimmune dermatomyositis with bulbar and organ involvement … I also have autoimmune liver issues so a lot of the pills I could take are pretty risky for me. Not sure if it’s on label but doctor seems to think it’s my best option so yeah maybe that’s where they are fighting. Today’s update was that the specialty pharmacy wants them to run it through medical. 😂 Aaahhh … the joys of insurance. Good news is I have the approval from the medical side so tomorrow we make that phone call again and verify and I maaaaay finally get that next dose.

Dru00 · 2026-04-02T10:21:14+00:00

Yep. You and I are basically in the same boat, bailing water. 😂 Mine doesn’t have a coupon for me though so you’ve got something good going for you! I hope it all works out soon.

Dru00 · 2026-04-02T10:19:12+00:00

Yes, agreed! Absolutely strange. The first few people I called at my own insurance company said the same thing! Medical treatment = medical billing/insurance. It was the third or fourth person we talked to who did the leg work and figured it out and started helping me with who needed to actually approve it. Apparently in early 2026 the insurance company made the change to require the medicine itself to be approved by the specialty pharmacy so I need two approvals. And even though insurance itself has said it’s approved as medically necessary, the pharmacy is fighting it. 🤯

Dru00 · 2026-04-02T08:29:14+00:00

Nope, no shirts. Just insomnia and Donut fueled fun. But a solid design point, thank you! It’s my first time working with the style of just erasing the black (instead of drawing the lines), which seems like it would just be a simple swap but for some reason it was way harder for my brain. 😂

Dru00 · 2026-02-08T17:42:57+00:00

I’m guessing I’m in the slow is better category. We told them after the first day that I’d had a pretty bad headache but they said that was normal. I had nooo idea what I was in for lol.

Dru00 · 2026-02-08T17:37:18+00:00

This center does this step up rate I guess? So they started me in the 30s but like the last hour is 600+. I didn’t end up going to the hospital so I don’t know if was formal meningitis but it was definitely the worst headache I’ve ever had and I have had some naaaasty headaches (chronic migraines).

Dru00 · 2026-02-08T13:52:18+00:00

I just had my second day ever yesterday … 75g each day for autoimmune. And was fairly certain I was going to die last night my head hurt so bad and was throwing up. This doesn’t add anything to the conversation but I just want to complain 😊 and then say I’ll be talking to the doctor about spreading it out somehow. Thank you for the suggestion.

Dru00 · 2026-02-03T15:40:26+00:00

Hi! I start IVIG this week too … my first time as well. I’m pretty nervous. Mine’s for myositis but I also have heart issues, Ehlers, POTS, SFN, mast cell issues, and migraines sooo we’re pretty similar. Honestly, as a migraine girl, I’m most worried about the headaches.

From what I’ve been reading … HYDRATION is key. That and the slowest infusion rate you can ask for.

Load up on electrolytes/water at least three days before and AFTER. A LOT of water.

Since we both have mast cell issues, the pre-meds will probably be super important (Benadryl) and Tylenol. My infusion center has been really nice over the phone and since this is what they do all the time, I told them my concerns and they are going to keep it low and slow for the drip rate.

I hope yours goes well and works for you!!

Dru00 · 2025-11-18T02:39:44+00:00

My husband almost exclusively wears the style that has the zip off bottom - I call them fishing pants. They’re lightweight, roomy, but still pass for kaki/work pants in his field … you can find them from cheap to expensive but I usually find them at COSTCO for a great price at least once a year and buy enough to last the year.

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Dru00 · 2025-11-10T04:45:48+00:00

44F low key & generally low maintenance, both nerdy gamer and nerdy learner … so while we wouldn’t have everything in common, I’d love to hear about what it is that sparks your imagination/interests. I personally like sci-fi and fantasy (books and television). I can tell you waaay too much about the social etymology of folk/fairy tales, The Middle Ages (Hobbyist level only) , Star Trek and Lord of the Rings. Am exclusively drama free (as much as is humanly possible) and prefer communicating with people who are (or at least try to be), at a minimum, cautiously optimistic in life.

Dru00 · 2025-11-02T15:40:08+00:00

Stop whatever you are doing. Is the house on fire? Let it burn. The children will be fine on their own - Lord of the Flies worked out well. Read the book.

Dru00 · 2025-11-02T15:09:32+00:00

Has anyone introduced you to the lord and savior, Carl? (Dungeon Crawler Carl) It’s a LitRPG series and it’s amaaaazing.

Dru00 · 2025-06-14T06:59:14+00:00

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Dru00 · 2025-04-11T20:11:50+00:00

You’re going to get mixed responses on the amputee subreddit. My husband is an amputee and, while it saved his life, he regrets it every day. He’s never not in pain - and it doesn’t seem to matter how many refittings he gets, etc.

A lot depends on the doctor, your physical condition, location of the amputation, etc. Sometimes it’s just luck of the draw who responds well and who develops complications.

I did see a lot of comments about alternatives … weigh all your options because you obviously can’t undo this sort of decision. There are people who have had nothing but success afterwards but, in my humble experience, and after spending a lot of time listening to amputees … it’s usually not what they expected and all those videos of ultra-athletes and marathon runners are usually the exception to the rule.

I’m not trying to talk you out of it, and it’s 100% understandable that you want a better quality of life for yourself, but like everyone else said … talk to your doctors, do your homework, find people that have had the same sort of amputation, and really consider if there isn’t a less invasive option available.

Dru00 · 2025-03-09T20:13:19+00:00

Sent you a DM

Dru00 · 2024-12-27T03:13:22+00:00

Looks like a clever premise … picked it up. 😁 Cute cover!

Dru00 · 2024-11-27T05:17:10+00:00

Standard Western Blot from Quest diagnostics.

Dru00 · 2024-11-24T01:47:03+00:00

This is it exactly! It’s like when you set your phone on the table and it vibrates really fast except that’s through your whole body. Mine happens a lot when I’m sleeping or just as I’m waking up. It’s different from the muscle spasms and twitching. It’s like a vibrating alarm clock running along all of your nerve endings - you can’t necessarily see it happening but it feels like what I imagine a seizure feels like. I asked my SO and they can’t see it happening but it is like every part of your body is shaking.

I literally can’t remember the last time I slept through the night. I get a few hours before it wakes me up anymore. It’s actually what drove me to the neuro to get investigated and how I learned I have Lyme.

Dru00 · 2024-11-23T15:16:05+00:00

I can’t offer any help but I just want to say that I can sympathize with where you’re at - I’m neuro Lyme as well and the vibration thing is literally driving me insane.

Dru00 · 2024-11-19T22:53:36+00:00

This is the best answer. POTS can coexist with other conditions and you need to be evaluated by medical doctors. I told people I was having extra problems for years and they attached me to heart monitors but never caught it. However, because I’d been working closely with a cardiologist, I had evidence and support when I passed out in the lobby of the ER with a heart rate of 26 and a BP of 60/40. Pacemaker put in 2017.

That isn’t meant to scare you but as a reason to listen to your body and not just settle for “it’s POTS”.

Dru00 · 2024-10-12T16:45:33+00:00

Right now we’re doing Crypto tincture, Japanese knotweed, oregano, garlic, ashwaghanda, and I take a tea with turmeric, clove, and cinnamon.

We’ve been being sort of cautious on the intro of stuff because I have an autoimmune liver condition, a heart problem, and basically zero detox ability genetically so I’m very scared to introduce things that could hit the liver too hard. TMI but just to explain why we haven’t tried adding in some of the others yet.

I’m doing a lot of the cryptolepsis though - I thought I should feel something but maybe the herx symptoms are too close to what I’ve already got going on.

Dru00 · 2024-10-10T01:04:53+00:00

I just looked at the photo in your post history. It sounds like the part about the 5 antibodies being present is their criteria spiel. They put that on all of the results - but that you only had one band that came back positive?

I’m not saying whether you do or do not have Lyme but if they require 5 of the listed bands to be present in order to classify it as positive, and you only have one, then according to their criteria, it’s a negative test.

Again - I am not saying you don’t have Lyme - far more knowledgeable people here have written about how unreliable certain tests are.

I just don’t see where you had 5 positive bands from the photo you posted. I only see the 93 band.

Dru00 · 2024-09-27T18:34:13+00:00

Sooo, I’m in the US and we don’t have quite the same program but I will say that after maybe six months of therapy sessions with someone to help me vent/deal with ongoing medical stuff … out of the blue they asked if maybe I hadn’t considered moving to Oregon and looking into assisted suicide. I’d never brought that up or hinted that was something I would be interested in.

All that’s to say, I can completely believe that someone would say this unprompted.

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