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What to expect with IVIG?

crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
I'm tagging @Gingergrrl @Learner1 and @Jesse2233 because you guys are the ones I know of who have done IVIG for autoimmunity.

I'm starting IVIG for various autoimmune issues (Sjogrens, LEMS & likely seronegative Autoimmune Encephalitis) probably sometime this month.

I will be doing a high dose once a month, and I am really nervous about what I should expect. Will I feel improvement after the first treatment if I have only been sick for 7 months or will it take some time?

Also, how can I reduce my chances of getting asceptic meningitis? I really don't want to deal with an even more inflamed brain lol

I would appreciate any suggestions that you guys may have, thanks!
 

Gingergrrl

Senior Member
Messages
16,171
I'm starting IVIG for various autoimmune issues (Sjogrens, LEMS & likely seronegative Autoimmune Encephalitis) probably sometime this month.

That is great news!

Will I feel improvement after the first treatment if I have only been sick for 7 months or will it take some time?

There is no way that I can predict what you will feel b/c we are all so different but I can tell you my personal experience. In the immediate days following IVIG, I have a headache, neck stiffness, and sometimes an immune reaction with low-grade fever, chills, muscle pain, etc. This is normal and will pass within a few days post-IVIG.

After that immune reaction passes, I always felt better. The very first thing that improved for me with IVIG was that it put my MCAS/ anaphylaxis/ allergic reactions to food & smells, etc, into complete remission and it has not returned in two years. With more treatments it began to improve my other symptoms (muscle weakness, breathing weakness, completely eliminated my very exaggerated startle reflex, etc).

The final problem to go into remission was POTS, but I was already getting Rituximab for many months by that point, so there is no way to separate the two. The combination of IVIG & Ritux is what returned my muscle/breathing strength to normal and allowed me to stand and walk without wheelchair and drive my car again. But to reach this current state (which is very recent), took me almost two years of IVIG and almost one year of Rituximab. But the remission of my MCAS/ allergic reactions was very quick and happened with IVIG alone (prior to Rituximab).

So while it was life-changing, and has exceeded my wildest expectations, it was not a "quick fix" and was not an easy road to travel.

Also, how can I reduce my chances of getting asceptic meningitis? I really don't want to deal with an even more inflamed brain lol

There are many things to reduce aseptic meningitis and also the risk of blood clots:

First, I would be tested for the anti-phospholipid/ Hughes Syndrome Panel to make sure that you are not a blood clot risk.

Second: I would do the slowest infusion speed possible, even if this takes 7-8 hours. Slowing down the infusion rate is the #1 thing to reduce aseptic meningitis risk. Even if you feel okay during the infusion and a nurse pressures you to ramp up the speed, I would not do it. My doctor wrote on the order that my infusion cannot be faster than 8 hrs per day.

Third: if your dose is high, I would split it into several days. When I was doing 82 grams, I did it in a 3-day split dose and when we tapered me down to 55 grams, I did it in a 2-day split dose.

Fourth: I would make sure that you get adequate pre-meds for your own situation. For me, they are Tylenol, Pepcid, and Atarax (but they vary for each person's situation). Many people require steroids for IVIG but I do not do well with steroids and react better without them.

Last: I would (at minimum) do the first few infusions at an infusion center vs. at home. I've done all infusions (for 2 yrs) at an infusion center that is connected to a hospital b/c I am too high risk allergically to do them at home (even though I've never had a problem in 2-years). But, if you are doing them at home, I would have an EpiPen available.

Edit: I just did my last IVIG infusion yesterday and am now done! (but will still be getting additional Rituximab infusions).
 
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crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
Thanks for all the information! I will be going to a hospital to have it done because I dont feel safe doing it at home.

Am I allowed to choose my premeds (steroids, benadryl, zantac) or do they choose for me? I would love to try it with steroids because I have been wanting to try steroids anyways
 

Sidny

Senior Member
Messages
176
Thanks for being persistent and keeping us updated on your journey. Sending well wishes your way! Not sure about the steroids but from my understanding one main reasons to forgo them would be their immunosuppressive action. Not sure how much or if that even matters, just a thought though.
 
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Gingergrrl

Senior Member
Messages
16,171
Am I allowed to choose my premeds (steroids, benadryl, zantac) or do they choose for me?

You would discuss with the doctor who is writing your IVIG order for the infusion center. The order should include the pre-meds in addition to the IVIG order (brand, dose, infusion speed, etc, of IVIG).

My case was a bit unique b/c my MCAS doctor was the prescriber (and the infusion center is part of the hospital where he works) so the infusion nurses know about MCAS and when he wrote that I was to take my own pre-meds, they did not question it. I bring (dye-free) Tylenol, Pepcid, and Atarax from home which I take 30 min prior to the infusion.

I'd guess that even though many infusion centers would not allow the patient to bring their own pre-meds from home they would always follow whatever is written on the order. So if your doctor writes a specific steroid, Benadryl and Zantac, then this is what you would be given. When I do Rituximab (vs. IVIG), I do get IV Benadryl and this is administered by the infusion nurse.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
My experience has been different. I have autoimmune POTS and MCAS and immunodeficiency, and have only done IVIG, and only for 11 months. Rituximab might be a future posdi policy, but we are trying to see if IVIG can solve my issues first. I also had several chronic infections so gerting them dealt with first is necessary before wiping out B cells.
I will be doing a high dose once a month, and I am really nervous about what I should expect.
How many grams of IVIG per kg of you? Doses range from .4g/kg to 2g/kg. I'm currently on 1.5g/kg a month, but was on less for the first 9 months.

Overall, the treatment has helped me, but going through it is a bit of a roller coaster as @Gingergrrl has described.

I sleep most of the day of the treatment, which takes 10 hours, then manage side effects for the next 3-4 days. Over time, my side effects have been much better, but they are still there.

Side effects have been nausea and intestinal, but ondansetron, cromolyn sodium, Zantac, and ketotifen helped. I dint get nausea anymore, so only take the other three daily, and have no more intestinal symptoms.

I get Solumedrol, a steroid, the day of, and dexamethasone, a very strong steroid for the next 3 days, tapering down to my usual replacement hydrocortisone dose. The dexamethasone, along with boswellia, curcumin, and a little naproxen (which I try not to take as NSAIDs can cause damage).

And I take 25-50mg of Benadryl 3-4 tines a day for 3 days. It gets injected into my IV, and then I inject it after that as all of the OTC products contain corn which I'm allergic to. At first, the Benadryl would knock me out (plan ahead!) but I seem to have developed a tolerance, so its not so bad.
Will I feel improvement after the first treatment if I have only been sick for 7 months or will it take some time?
This treatment is a shock to your immune system and it's a process. It'll take awhile.
Also, how can I reduce my chances of getting asceptic meningitis? I really don't want to deal with an even more inflamed brain lol
I got it after my second infusion and went to the ER at the hospital.

IVIG products are not interchangeable, they must be matched to the patient. Most of the people around here get Gammunex C, ehich I am on now, but the infusion service started me on Gammaked, which, on paper, is exactly the same, but was much harder on my body.

I woke up at 2am with a screaming headache and stiff neck. The doctor at the ER eas very nice, and they gave me IV Benadryl, dexamethasone, and toradol, an NSAID. I was there for 6 hours... I learned the best thing to do is to take the drugs at home and skip the ER...so now, if I sense the headache and neck stiffness starting up, I start with 2g boswellia and 2g curcumin (which reduce inflammation), take Quicksilver CBD oil (makes the headache go away) and dexamethasone.

There is no way that I can predict what you will feel b/c we are all so different but I can tell you my personal experience. In the immediate days following IVIG, I have a headache, neck stiffness, and sometimes an immune reaction with low-grade fever, chills, muscle pain, etc. This is normal and will pass within a few days post-IVIG.
I've had the same symptoms, plus the intestinal ones.

So while it was life-changing, and has exceeded my wildest expectations, it was not a "quick fix" and was not an easy road to travel.
Agreed.

Second: I would do the slowest infusion speed possible, even if this takes 7-8 hours.
Slowing down the infusion rate is the #1 thing to reduce aseptic meningitis risk. Even if you feel okay during the infusion and a nurse pressures you to ramp up the speed, I would not do it. My doctor wrote on the order that my infusion cannot be faster than 8 hrs per day.
My infusion is slow for the first hour, then faster for the rest of the time. Not as fast as for immunodeficient patients. But because its a bioligic product from different donors, different batches can affect you differently, so they watch you for a reaction before speeding it up. And they keep an anaphylaxis kit on hand.
Third: if your dose is high, I would split it into several days. When I was doing 82 grams, I did it in a 3-day split dose and when we tapered me down to 55 grams, I did it in a 2-day split dose.
I have no trouble with 55g done in one day. If I were to double it, my doctor was going to have me do it in two.
Fourth: I would make sure that you get adequate pre-meds for your own situation. For me, they are Tylenol, Pepcid, and Atarax (but they vary for each person's situation). Many people require steroids for IVIG but I do not do well with steroids and react better without them.
I need the steroids and couldn't do it without them. They give me the Solumedrol first thing, then 50mg Benadryl and start the IVIG..i usually sleep for the first hour. I did take naproxen, but don't anymore. And I take the cromolyn, ketotifen and Zantac every day, including the day of IVIG.
Last: I would (at minimum) do the first few infusions at an infusion center vs. at home. I've done all infusions (for 2 yrs) at an infusion center that is connected to a hospital b/c I am too high risk allergically to do them at home (even though I've never had a problem in 2-years). But, if you are doing them at home, I would have an EpiPen available.
I have MCAS, but I was not as sensitive. And, having had cancer first, I'm tired of sitting around infusuon centers in a recliner chair. I love doing it at home, where I can take a shower, sleep in my own bed if I want to, make meals, and go outside in my garden.

The infusion service sends a nurse to my house who is dedicated to me all day. I even had to take the nurse to my office for an emergency and to a doctor's appointment (I didn't drive.)

There's an anaphylaxis kit with epinephrine and the hospital is 5 minutes away, but I have felt 100% safe the entire time.
Am I allowed to choose my premeds (steroids, benadryl, zantac) or do they choose for me? I would love to try it with steroids because I have been wanting to try steroids anyways
Be careful what you wish for! Steroids have a strong effect on your body, can affect bone health, and make you gain weight. I've gained 10 lbs in the past year due to the dexamethasone. My adrenals didnt function well to start with, and I take replacement dise hydrocortisone to function, and it's tricky switching on and off the stronger steroids all the time.

Your doctor should take your situation into consideration and come up with a plan thst works for you.

Taking Thorne Boswellia, Thorne Meriva curcumin, and Quicksilver CBD oil is pretty effective and not so hard on the bodt, so you might consider them.
I'd guess that even though many infusion centers would not allow the patient to bring their own pre-meds from home they would always follow whatever is written on the order. So if your doctor writes a specific steroid, Benadryl and Zantac, then this is what you would be given. When I do Rituximab (vs. IVIG), I do get IV Benadryl and this is administered by the infusion nurse.
Agreed. You need to be able to give your doctor feedback and be able to ask questions and he/she will instruct the nurses. Instructions can be written with leeway to adapt to your changing needs. However, IVIG is a major intervention and something to be dealt with thoughtfully.

Best wishes as you go through this process...
 

Gingergrrl

Senior Member
Messages
16,171
My experience has been different. I have autoimmune POTS and MCAS and immunodeficiency,

We've definitely had some differences in our experiences with IVIG, but some similarities, too. We both have Autoimmune POTS and MCAS but I also have an atypical form of LEMS and I do not have immunodeficiency. What I explained re: my own protocol was for high dose IVIG for autoimmunity (having to split the dose into several days, etc).

I sleep most of the day of the treatment, which takes 10 hours, then manage side effects for the next 3-4 days.

I also sleep for several hours during my infusion and then manage the headache and side effects for 3-4 days.

I got it after my second infusion and went to the ER at the hospital.

I ended up at the ER ten days after my very first IVIG infusion in July 2016. I had an excruciating headache and after the 10th day, I was ready to bang my head against the wall to stop the pressure. The ER said that I did not have aseptic meningitis but I still wonder if I did. The infusion speed was way too fast for me, and once they lowered it (for all future infusions), this never happened to me again.

IVIG products are not interchangeable, they must be matched to the patient. Most of the people around here get Gammunex C, ehich I am on now, but the infusion service started me on Gammaked, which, on paper, is exactly the same, but was much harder on my body.

I agree and am glad you mentioned this in your reply. My MCAS doctor felt that Gamunex is the best tolerated by his patients and it is the only brand that I have ever tried.

different batches can affect you differently

This is very true as well. I've had horrible reactions to some batches and almost no reactions to others (beyond the IVIG headache). When I had a batch that I really reacted to, I was able to contact the infusion center pharmacists and they made sure that I did not receive that particular batch or lot # again.

I have no trouble with 55g done in one day

That is amazing, and I know many people can do that, but it would probably kill me! I split 55 grams into two days and do 27.3 grams each day. For me, the other risk that I did not mention if the infusion speed is too fast is third spacing of fluid (but I know this does not pertain to many others).

I need the steroids and couldn't do it without them. They give me the Solumedrol first thing, then 50mg Benadryl and start the IVIG..i usually sleep for the first hour. I did take naproxen, but don't anymore. And I take the cromolyn, ketotifen and Zantac every day, including the day of IVIG.

I do not do well with steroids (beyond my daily Cortef) and am allergic to NSAIDS and did horrible with Cromolyn (in the past). I take Ketotefin as a daily maintenance med but not as a pre-med for IVIG. The most effective one for me is Atarax (but I also seem to be unusual in this regard, too)!

The infusion service sends a nurse to my house who is dedicated to me all day. I even had to take the nurse to my office for an emergency and to a doctor's appointment (I didn't drive.)

Aren't you hooked to an IV pole which is plugged into a wall?!! How did you get it into a car? I am so confused! :jaw-drop:

Best wishes as you go through this process...

Agreed and best wishes to all embarking on this journey with IVIG. There are two excellent private IVIG groups on FB if anyone is interested. I have not posted there in a very long time but in the beginning, I bombarded them with all my questions!
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Aren't you hooked to an IV pole which is plugged into a wall?!! How did you get it into a car?
No, I am not!!

The IVIG hours into a special pack I can sling over my shoulder and carry around with me. :D The pump has a special pocket inside the pack, with a window flap that opens up so I can peek through it. Not the exact one, but a little like this:

https://www.chinookmed.com/01341/intravenous-intraosseous-bag-tmk-ivio.html

When I was doing IV antibiotics 3 days a week, I was even able to go grocery shopping with it, though I'd never do it during IVIG.
 

Gingergrrl

Senior Member
Messages
16,171
The pump has a special pocket inside the pack, with a window flap that opens up so I can peek through it. Not the exact one, but a little like this:

https://www.chinookmed.com/01341/intravenous-intraosseous-bag-tmk-ivio.html

Wow, I've never seen anything like that! It looks like it would be too heavy for me to carry (but I could be wrong). You are a true multi-tasker to go to the grocery store while getting an infusion! I am not quite as advanced LOL. At my infusion center, I am hooked to an IV pole that is plugged into a wall. We can unplug it when I go to the restroom but then we have to plug it back in.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Alas, I am quite experienced with IV poles and recliner chairs... It's nice to have another option, and it's great to just be able to go upstairs to bed when I want to and sleep on my stomach if I feel like it without dragging the IV pole with me!:sleep:
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
So how do I start the process for getting IVIG treatment?
The best thing would be to familiarize yourself with your insurance policy on what conditions and labs qualify one for IVIG. If one has immunodeficiency, it's a bit easier than autoimmunity, but there are certain autoimmune conditions that are known to benefit and they are listed on insurance company policies.

Then, if you qualify, your information would have to be submitted for pre-approval to your insurance, who will likely approve treatment for a certain period of time at certain intervals at a certain dose.

It is possible to get IVIG at home from a home infusion service, or one can get it at a hospital infusion center. My home infusion service took the doctor's order and got it approved by my insurance, submitting my labs and diagnosis. Hey then deliver the drugs to my house in advance of my treatment date, and then a nurse comes to my house to provide the treatment according to the doctor's orders. If you go to hospital route, they would be sending your information to your insurance for approval, scheduling your treatment caring for you.