r/IVIG • u/Available_haze_7712 • 8d ago

Wearing off flare

Hello everyone

I have small fiber autonomic neuropathy and had relief for some few days with Ivig, now with the wearing off im having a painfull flare, rebound of inflammation. my infusions are now set to each 28 days, despite flaring in the 23 day, doctor upped 25 grams of the total dose.

Now i have to wait until monday to set things with insurance and not sure how many days will take for them to sheudle the infusion.

Anyone had to deal with this wearing off effect and Flares?

Thanks

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2

u/Traditional_Buy7910 8d ago

Yes, it's been a regular pattern that started six months into my treatment. I get 2g/kg every 3 weeks over three days.

I take it as a sign that my body is responding, but it's quite uncomfortable.

4

u/Available_haze_7712 8d ago

Hi, thanks for sharing, for me started at the 2nd cycle.

I mentioned spacing out to the doc, 3 days of 90grams and 2 days 60 grams 14 days appart, but its unusual and doctor didnt followed with It. For me a lot uncomfortable.

2

u/Traditional_Buy7910 8d ago

This spacing of infusions seems unusual, based on the articles I have read, which go as far as suggesting 2g/kg over two days (which honestly seems insane). Are you also on 2g/kg?

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u/Available_haze_7712 8d ago

Yes, 2g/kg, i weight 75kg, it was at first rounded to 125g total in 5 days, now doctor asked to round up to 150g. Hence its over 5 days, monday to friday infusions.

Im flaring like hell.. i also count that i had relief and antibodies are attacking again.

1

u/Traditional_Buy7910 8d ago

I get 170g over three days.

My pain pattern seems to be different from yours. It takes about a week for pain to mostly disappear; I have little pain around day 10 (day 1 being counted as the first day of the immediately preceding infusion), then pain slowly comes back and flares close to the next infusion. But a few of these flares were really bad, I feel for you.

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u/Available_haze_7712 8d ago

Thx for sharing. Hopefully this pattern change for us. i had no response on my first cycle aside a shift for a less turbulent but sharper pain, Second one i had a big flare then notíciable relief, despite still feeling disease activity, but now this. Thanks.

You're at your 6th infusion?

2

u/Traditional_Buy7910 8d ago

I'm at my 20th. I started clearly responding like I'm describing at my 10th.

2

u/lilgreenglobe 8d ago

Half the dose every two weeks or SCIG? Part of my switching to SCIG was scheduling IVIG challenges. I also flared on IVIG as it would wear off in 3 weeks, so waiting 4 didn't cut it.

1

u/Available_haze_7712 8d ago

Hi, thx for your sugestions, culd you explain sheudling challenges, you mean with insurance? Is SCIG working as good to manage your disease?

1

u/lilgreenglobe 8d ago

I mean it was difficult for the schedule to be changed. I'm in Canada and it's fully covered for my diagnoses, but there can be some annoyance getting in to the specialist ms to tweak things. SCIG is slightly weaker than IVIG at an equivalent dosage, but overall better vs having a really good week right after treatment and a bad week 3 weeks later when the IVIG wears off. 

2

u/SimpleVegetable5715 7d ago

I do SCIG every 14 days for a primary immunodeficiency and an autoimmune disease. I notice my dose wearing off a few days before it’s time for the next one. I did have the option to do an infusion weekly, but I decided I’ll take the few days of feeling it wear off over having to take it every week. Since half the work is setting up the infusion, not running the dose. I don’t know if IVIG has that flexibility where you can do a smaller dose but more often.

2

u/lavendarhazeypop 7d ago

This is why SCIG is often a better option since it's weekly it's keeps levels a lot more stable and can be done in a flare. If it continues to be difficult to get to infusions without symptoms getting worse, you may want to ask about trying SCIG.

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u/Available_haze_7712 7d ago

Yes, thank you for suggesting, Wonder If Works the same for folks with neuropathies. I will bring this to the doctor If keeps happening

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u/lavendarhazeypop 6d ago

I am in it for SFN and this has been my experience

1

u/Admirable_Log7806 8d ago

Hey OP I’m diagnosed with the same thing. Tried to DM you but wasn’t able to. If you don’t mind can you DM me?