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3-month IVIG experience

Dmitri

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I finally got IVIG infusions approved earlier this year and began receiving them monthly, starting in June - 3 days in a row, 48g per day for 2g per kilogram of bodyweight. Only pre-med is IV benadryl, refused tylenol since only oral form was available.

The results? I can't tell for sure if there's any benefit. First week after the side effect hangover was over each time, I felt worse than usual. Second and third weeks, felt slightly better than usual, and fourth week was back to baseline. This happened three months in a row and feels too consistent to coincidence. My urinary frequency seems slightly decreased too, and I don't get the onset of muscle tiredness or "lactic acid burn" as rapidly from doing motions like brushing my teeth. On a less positive change, chronic diarrhea has also worsened a bit in the past month. I'm not sure if any of that is from the IVIG.

Side effects were bad after the first round of infusions, pounding headache that started on the first day and unbearable nausea that started on the second day. Zofran had to be added to the IV on the third day.

Second month, side-effects were milder. Severe headache and nausea only started on the third day, but they weren't as bad as in the first month. Third month, side effects were lesser still and began on the day after the last infusion.

Insurance has approved another three months, nothing left to lose so I will keep going until there's another option to try. Finished my fourth round of infusions a few days ago and got over the expected hangover, which struck on the second day after the last infusion this time.
 

Markus83

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You get approximately 150 g IVIG each month which would cost $ 10-15 000 in Germany. How is it possible that you get this covered by your insurance 6 months in a row? I mean, what I've heard, it seems really hard to get IVIG coverd in the US unless you have a special diagnosis like immune defects, which qualifies you for IVIG.
 

Gingergrrl

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I finally got IVIG infusions approved earlier this year and began receiving them monthly, starting in June - 3 days in a row, 48g per day for 2g per kilogram of bodyweight. Only pre-med is IV benadryl, refused tylenol since only oral form was available.
Can I ask why you refused the Tylenol (or did you take your own)? I also did high dose IVIG (for two years) and in case this is helpful, my pre-meds were all oral meds (Atarax, Pepcid, and Tylenol) all of which I took about 30 min prior to starting the infusion. I did a very slow infusion speed and sometimes took a second Atarax half-way though the infusion.

The results? I can't tell for sure if there's any benefit.
I would give it more time and three months is early to tell the long-term benefit. IVIG put my MCAS into remission very quickly but took much longer for improvements in my other medical issues.

unless you have a special diagnosis like immune defects, which qualifies you for IVIG.
It sounds like Dmitri is doing high dose IVIG for autoimmunity (not low dose for immune deficiency). I also did high dose except for me the total dose was 82 grams vs. 150 grams. It was based on body weight, so the dose could have been slightly higher for me, but I was not able to tolerate higher than 82 grams (which for me was 27.3 grams per day given in a 3-day cycle).

Best wishes @Dmitri :hug:
 

Dmitri

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You get approximately 150 g IVIG each month which would cost $ 10-15 000 in Germany. How is it possible that you get this covered by your insurance 6 months in a row? I mean, what I've heard, it seems really hard to get IVIG coverd in the US unless you have a special diagnosis like immune defects, which qualifies you for IVIG.
The indication for it was Sjogren's and small fiber neuropathy, which is an off-label use. It took many months to get it covered. My rheumatologist had to send a written appeal with a supporting note from my neurologist.

$10-15k is approximately how much it costs here per month as well. By US standards, that's not so scary when looking at the cost of many other drugs and procedures. There's cancer drugs that go over 50,000 a month.

Can I ask why you refused the Tylenol (or did you take your own)? I also did high dose IVIG (for two years) and in case this is helpful, my pre-meds were all oral meds (Atarax, Pepcid, and Tylenol) all of which I took about 30 min prior to starting the infusion. I did a very slow infusion speed and sometimes took a second Atarax half-way though the infusion.



I would give it more time and three months is early to tell the long-term benefit. IVIG put my MCAS into remission very quickly but took much longer for improvements in my other medical issues.



It sounds like Dmitri is doing high dose IVIG for autoimmunity (not low dose for immune deficiency). I also did high dose except for me the total dose was 82 grams vs. 150 grams. It was based on body weight, so the dose could have been slightly higher for me, but I was not able to tolerate higher than 82 grams (which for me was 27.3 grams per day given in a 3-day cycle).

Best wishes @Dmitri :hug:
The reason I refuse tylenol is because I can't tolerate any oral meds. For a direct comparison, I can't tolerate oral benadryl. If I take it orally I get increasingly worse irritation in my mouth and GI tract, ulcers in my mouth, stinging on my tongue, etc. The GI irritation causes systemic worsening too, like dizziness, neuropathic pain, headaches, orthostasis, etc. Same thing happened when I tried pure, compounded ketotifen, so it's not just the fillers. The IV benadryl is given at higher doses than I ever took orally without causing those side effects.

The GI tract is dense in nerve endings and immune cells, probably best for anyone with sensitivities to avoid it as a route of drug administration whenever possible.

During the very first day, the infusion rate was raised to almost 300, and that may have contributed to the severity of my first IVIG hangover. Ever since, it has been capped at 180. I never got any side effects during the infusions themselves. They always took hours or days after the procedure finished to hit.

I will have to re-read your (very helpful!) notes on IVIG since it's been so long and getting it approved seemed like a pipe dream at the time, so I didn't keep note of potential long-term roadmaps etc. What do you think is a reasonable trial period to see if it's helpful? I felt a bit discouraged because the impression given by the doctor, as well as patient testimonials, is that significant improvements are supposed to be seen quickly.
 

Gingergrrl

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The indication for it was Sjogren's and small fiber neuropathy, which is an off-label use. It took many months to get it covered.
Mine was also for autoimmunity and took many months to get it covered back when I first started. I did two years of IVIG (July 2016 to July 2018).

The reason I refuse tylenol is because I can't tolerate any oral meds. For a direct comparison, I can't tolerate oral benadryl.
I was about to ask you if you cannot tolerate oral meds b/c of dyes and fillers... but...

Same thing happened when I tried pure, compounded ketotifen, so it's not just the fillers.
You just answered that here if you were not able to tolerate pure compounded Ketotefin. I wonder if your tolerance for meds will improve after your treatments? Have you ever talked to @Blake2e about this?

During the very first day, the infusion rate was raised to almost 300, and that may have contributed to the severity of my first IVIG hangover. Ever since, it has been capped at 180. I never got any side effects during the infusions themselves. They always took hours or days after the procedure finished to hit.
That is an unbelievably high infusion speed for IVIG and would have sent me to the emergency room with aseptic meningitis and/or pulmonary edema from third spacing. My infusion speed for IVIG was 40 maximum (which is why it took me three days to do 82 grams but it was worth it in my case). And the IVIG headache was almost always delayed in my case as well.

I will have to re-read your (very helpful!) notes on IVIG since it's been so long and getting it approved seemed like a pipe dream at the time, so I didn't keep note of potential long-term roadmaps etc.
Please let me know if I can help. There are also two excellent private groups on FB where I posted endless questions back in 2016 and got amazing feedback. I can give you the name of the two groups via PM if you want. I am behind on PM's as usual but I always reply even if slowly :bang-head:

What do you think is a reasonable trial period to see if it's helpful?
It is so hard to say b/c everyone is so incredibly different. I had almost instant improvement in my MCAS/ allergic reactions and never had another episode of anaphylaxis (to this day) once I started IVIG and it somehow re-set my immune system away from the allergic reactions.

But my other symptoms took much longer to improve (muscle weakness), and my worst symptoms did not improve until after I added Rituximab and was on Ritux for about nine months (overlapping with IVIG). Then I stopped IVIG but continued Ritux and now get maintenance infusions of Ritux 2x/ year. It was approx May 2018 that I was able to breathe normally, walk without wheelchair, and drive my car again (after four years of using wheelchair). The most intractable symptoms that took the longest to improve were POTS & Dysautonomia.

I felt a bit discouraged because the impression given by the doctor, as well as patient testimonials, is that significant improvements are supposed to be seen quickly.
My understanding is that the quickest improvement (in autoimmunity) are from Plasmapheresis/ PLEX vs. IVIG and/or Rituximab takes much longer.
 

Dmitri

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That is an unbelievably high infusion speed for IVIG and would have sent me to the emergency room with aseptic meningitis and/or pulmonary edema from third spacing. My infusion speed for IVIG was 40 maximum (which is why it took me three days to do 82 grams but it was worth it in my case). And the IVIG headache was almost always delayed in my case as well.
From what I understand, most of the nasty things begin hours or days after the infusion is over for most patients. My lack of immediate reactions during the infusion itself appeared to signal to the nurses that they can keep raising the infusion rate. After my reaction to the very first infusion, they never raised it higher than 180. I asked if they can go lower, and they told me that's the "cap" and it can't slowed down further for some reason. 40 is the starting rate for me, and it gets raised in several increments until getting to 180.

This was all at a large infusion center where there's lots of patients receiving IVIG every day.

I will definitely try to extend this treatment trial for as long as possible, especially now that the side effects are getting increasingly more tolerable and there's small hints of improvement. If IVIG doesn't turn out to be helpful, rituximab was brought up as a possible option.