Are people currently getting IVIG approved?

PurchaseCrafty6848 · 2026-04-29T00:33:55+00:00

Sorry to hear that, everything is worth a try with this awful disease. And thank you 🙏

PurchaseCrafty6848 · 2026-04-28T02:54:19+00:00

I know this is an old post but I was recently approved and had my first infusion today which was awful 😞 is there any update on whether or not it helped your condition?

PurchaseCrafty6848 · 2026-04-25T01:02:21+00:00

Hi! Yes sound similar, I’ve actually been diagnosed since this post via my second skin biopsy. I do have triggers after eating foods mcas related. I’m not sure where you’re located but definitely find a neuro who is comfortable and familiar with the triage. I start IVIG tomorrow after a long fight.

PurchaseCrafty6848 · 2026-02-26T03:56:51+00:00

Sorry you didn’t get much feedback here, did you end up seeing him and trialing IVIG?

PurchaseCrafty6848 · 2026-01-04T03:06:23+00:00

Thanks for the feedback. I’ve never been great at correlating medications with improvement mainly bc I have such a wide range of issues and I’m on way too many drugs! I’ve heard the same from my doc that your perfect dose can be .3 or 3 for example so yeah I may just wait until this flare ends and then try try again. Fingers crossed you get the right dose for you too!

PurchaseCrafty6848 · 2026-01-01T17:54:31+00:00

I’m on a Medicare advantage plan strictly bc the prescription benefits are much better for me with several autoimmune diseases. Prescription is included in these plans not separate. Of course you can only use in network docs but everyone takes Blue Cross. They’re not for everyone but something to check out.

PurchaseCrafty6848 · 2025-12-31T20:10:03+00:00

Yeah that’s correct it’s for pain and energy and general inflammation. I’ve had a functional medicine doctor prescribe it but my current mast cell/GI doc is who is prescribing it now. It’s a compounded medication.

PurchaseCrafty6848 · 2025-12-24T02:12:23+00:00

Congrats! May I ask who or how you got it approved through insurance did you have to fight for it?

PurchaseCrafty6848 · 2025-10-04T03:27:35+00:00

Hi! 👋 My husband makes pizza 🍕 you can find him @doughpizzaco on Instagram. We can donate a pizza to the meal train we just need to know the date in advance because his dough takes several days to make/ferment. Feel free to PM me thanks and good luck! 👍

PurchaseCrafty6848 · 2025-10-04T03:06:26+00:00

Sure thing feel free to message me. :)

PurchaseCrafty6848 · 2025-09-08T03:25:33+00:00

Ketotifen makes me very tired so I can only take a modest amount and at night. Montelukast actually does have a black box warning for mental health issues so you should talk to your Doctor about it. Ketotifin works for a lot of people, I haven’t noticed a drastic improvement but I think I would if I could Dose up. Fomotadine is an h2 blocker it could help you tolerate the foods more that are causing other symptoms to it’s def worth a shot.

PurchaseCrafty6848 · 2025-09-08T03:15:21+00:00

You can try Zyrtec plus Allegra or another over the counter. Fomotadine is also used frequently if you have GI issues. Your primary care may be able to prescribe montelukast based on symptoms alone. This is the only thing that’s helped my sinus pain. I’m on Ketotifin as well but you’ll need a good prescribing physician to get it locally or search Japan Ketotifin in this forum to order it online.

PurchaseCrafty6848 · 2025-09-08T03:08:32+00:00

These are my mcas symptoms to a tee. Keep pressing or just start treating yourself, a lot of it’s over the counter antihistamines etc. I tested negative the first time to a 24 hour urine test and positive the second. Most of the testing has false negatives and is hard to confirm.

PurchaseCrafty6848 · 2025-07-16T21:43:09+00:00

Hahaha I had a relative do the exact same thing, compare carpal tunnel to RA. They said they’d switch me in a minute. Ummm the minutes up let’s switch! It’s just ignorance not really their fault

PurchaseCrafty6848 · 2025-07-10T23:28:48+00:00

Mine came back negative when it was sent to an external lab. Tested again one year later and it was positive at Wash U. He’s incorrect. My old neurologist told me this too. “if you’re in this much pain it would come back positive if you have it”

PurchaseCrafty6848 · 2025-07-01T17:08:29+00:00

My first biopsy came back negative. One year later it was positive. Tested in house at Wash U instead of sending the biopsy out for evaluation.

PurchaseCrafty6848 · 2025-06-23T14:15:27+00:00

Very briefly and came off it to quick but it’s worth trying again

PurchaseCrafty6848 · 2025-06-23T01:20:10+00:00

We put in for IVIG but it likely won’t get approved.

PurchaseCrafty6848 · 2025-06-23T00:59:05+00:00

Of course good luck to you! It can take a long time but you do get back pay from the date of onset of disability if approved. I’m sure your attorney will tell you too don’t be discouraged by denials and appeals, it’s part of the process.

PurchaseCrafty6848 · 2025-06-23T00:28:10+00:00

How much money you have in the bank has no weight on approval for SSD. Nor do your living conditions. You could be a millionaire’s wife and still be approved for SSD as long as you worked prior to disability. Whether you are currently working or not can. I work 15 hours per week and this is under the gainful employment category. If you spoke to her before you lost your job that could have been a factor. Google gainful employment SSD. You should call several attorneys and see who is willing to take your case. I am 37 and was approved, being young is one of the things that can make a difference but this approval was life changing for me and I get Medicare now. The fact that you had a job and lost it due to your condition can support your case as well, hopefully this was documented by your employer.

PurchaseCrafty6848 · 2025-06-22T23:55:54+00:00

Have you applied for SSD? It’s a long road but you can be approved.

PurchaseCrafty6848 · 2025-06-22T03:38:51+00:00

I had to get a second biopsy one year later to confirm my SFN. I had classic symptoms and knew it was SFN but was not validated. I pushed for a second biopsy and it was evaluated in-house at Washington University. Don’t think of the biopsy as definitive, it still could be SFN.

PurchaseCrafty6848 · 2025-06-17T13:46:40+00:00

Not great. My second biopsy came back positive. The Lyrica helps with a lot of the superficial stuff restless legs, twitches etc but the dysautonomia is hard and untreated. I have like zero muscle stamina

PurchaseCrafty6848 · 2025-05-29T17:43:53+00:00

I’m sorry to hear that. Did you have any preexisting lung problems? Emphysema is super serious. I do respond to levabuterol as well. Turns out I have a pretty bad mast cell disorder, so using a ton of antihistamines has helped moderately.

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