How does IVIG work for both autoimmune and immune deficiencies?

[boohealth]

Do not, repeat do not, flush with IV saline if using Gamunex. Gamunex is the best, and most physiologically well tolerated, but if you read the insert, it forms precipitates when it comes into contact with saline. If you must hydrate with IV saline you'll have to completely change your line before infusing with Gamunex. I've rarely met a doctor who actually *reads* inserts.

 

[valentinelynx]

@valentinelynx Can I ask what you are receiving the HyQvia for and if you feel it has been helpful? When you say "one two sites like with IVIG" do you mean there are two separate injection sites or an IV in each arm simultaneously?

• I'm receiving the HyQvia for low IgG. My IgG was globally low (in the 400's), with low IgG1 and IgG2 subclasses.

• No IV's, this is subcutaneous. You insert a small needle into your skin, most likely on one side your belly (the infusion goes into the subcutaneous space, which is mostly fat). If the amount of the infusion is uncomfortable all going into one side of your belly you can use two needles connected to a "Y" tube so that you get half of the infusion in one site and half in the other. I find this is more comfortable: to have 150 ml's on each side rather than 300 on one side. You have a kind of a bulge under the skin (it spreads out) for a day or two and it can be sore.

Do you do the HyQvia at home or at a hospital infusion center? I already take Cortef and could probably take more prior to the infusion/shot if recommended by doctor. I have not had a fever in over three years and would almost feel like my immune system was doing something if this happened to me.

• I do the infusions at home. For the first 4 I had a nurse come out and show me how to set it up. One or two visits probably would have been sufficient to learn it, but the first 3 infusions are done as "ramp up" with increasing doses, and so the pump needs to be set differently each time, plus you are getting more each time, so it's nice to have someone there to make sure you are OK.
Actually the first 3 infusions were provided as a "free trial" by the drug manufacturer, while I was getting insurance approval. I think this is pretty common.

There's a lot of info on HyQvia, what it is, what it's like to infuse it, etc. at http://hyqvia.com. I've been impressed with Baxalta (the manufacturer) and the level of patient support they provide.

Good luck with everything.

 

[acer2000]

Do not, repeat do not, flush with IV saline if using Gamunex. Gamunex is the best, and most physiologically well tolerated, but if you read the insert, it forms precipitates when it comes into contact with saline. If you must hydrate with IV saline you'll have to completely change your line before infusing with Gamunex. I've rarely met a doctor who actually *reads* inserts.

So how do you start the line then?

 

[Gingergrrl]

Do not, repeat do not, flush with IV saline if using Gamunex. Gamunex is the best, and most physiologically well tolerated, but if you read the insert, it forms precipitates when it comes into contact with saline. If you must hydrate with IV saline you'll have to completely change your line before infusing with Gamunex. I've rarely met a doctor who actually *reads* inserts.

@boohealth Thanks for that info and if I ever end up trying Gamunex, I will remember to ask the doctor about it and will bookmark your post.

There's a lot of info on HyQvia, what it is, what it's like to infuse it, etc. at http://hyqvia.com. I've been impressed with Baxalta (the manufacturer) and the level of patient support they provide.

@valentinelynx For some reason, most of your message is inside of a yellow quote box and it won't let me respond to it. I will definitely read the hyqvia website if it looks like that is what my doctor will use. Am still in the dark re: if IVIG is the route we will go.

Re: the parts that I cannot quote... it sounds like the infusion leaves a lot of fluid in your belly which can take a day or two to dissipate and I am not sure if this would be good for me since I am prone to third spacing from MCAS and already can have fluid not going where it is supposed to. Although this can also occur with an IV so no idea which is safer in that regard!

 

[valentinelynx]

@boohealth Thanks for that info and if I ever end up trying Gamunex, I will remember to ask the doctor about it and will bookmark your post.



@valentinelynx For some reason, most of your message is inside of a yellow quote box and it won't let me respond to it. I will definitely read the hyqvia website if it looks like that is what my doctor will use. Am still in the dark re: if IVIG is the route we will go.

Re: the parts that I cannot quote... it sounds like the infusion leaves a lot of fluid in your belly which can take a day or two to dissipate and I am not sure if this would be good for me since I am prone to third spacing from MCAS and already can have fluid not going where it is supposed to. Although this can also occur with an IV so no idea which is safer in that regard!

Sorry about the messed up quote. Was too fried to figure out how to get it all orderly.

As for the fluid issues and third spacing, I think I understand. I, too, get edema, most likely from my low serum protein, although I have some degree of MCAS as well. The fluid deposit from the HyQvia is a kind of different thing, though - it is very localized, a kind of pancake like "blob" right under the skin. So, it's not in the abdominal cavity at all, not around the gut or internal organs.

It can be uncomfortable - the "blob" of fluid (for lack of a better term) does hang around for a couple of days as it slowly is absorbed into the bloodstream. This slow absorption is what makes it less likely to cause severe reactions, as it takes a few days for the antibodies to get into the bloodstream, so you don't get a big peak. The trade-off, I think (but I've never had IVIG so I'm not an expert on that by any means...) is that you are stuck with this lump of fluid for a couple of days. At least for me, I find that the infusion site with its mass of fluid feels like a bruise. It hurts when I move around for a couple of days. With IVIG, once the infusion is done, the IV comes out and that's it - unless you get reactions.

The best thing about HyQvia, I think, is that you can do it yourself at home, with no IV required, and you only need to do it once every 3-4 weeks once you get past the ramp-up period (the first two infusions are smaller and a week apart, then the third is 2 weeks after the second.) That's what appealed to me about it. And, in retrospect, given my febrile reaction to HyQvia (before the stress dose hydrocortisone), I think IVIG would have been very hard on me.

I don't think you are stuck with whatever type of IgG you try at first. From my reading, its seems people often try multiple brands and/or delivery methods before settling on what is best for them.

Good luck, and I hope you find a treatment that helps. It's too soon for me to tell if it will help me feel better, although I expect it make me less vulnerable to infections. I'm hoping it will give me more energy, if my body is not under constant onslaught by reactivated viruses. I know this is different than your needs, so I can't comment on how it works for autoimmune issues.

 

[boohealth]

So how do you start the line then?

The nurse primes it.

 

[acer2000]

I wonder if this is part of why I didn't do well on Gammunex. I don't remember how they started the line but I got very weird reactions when I took IVIG. I felt very kind of anxious and irritable. It would subside after a few days and then happen again after each infusion. Benadryl didn't help it.

 

[Gingergrrl]

Good luck, and I hope you find a treatment that helps. It's too soon for me to tell if it will help me feel better, although I expect it make me less vulnerable to infections. I'm hoping it will give me more energy, if my body is not under constant onslaught by reactivated viruses. I know this is different than your needs, so I can't comment on how it works for autoimmune issues.

Thank you for the additional info and I have bookmarked this entire thread for future reference in case I do get IVIG. I wish more was known about it for autoimmune issues and antibodies but it seems to be a mystery even to the doctors how this process works! Thanks again!

 

[Gingergrrl]

I wonder if this is part of why I didn't do well on Gammunex. I don't remember how they started the line but I got very weird reactions when I took IVIG. I felt very kind of anxious and irritable. It would subside after a few days and then happen again after each infusion. Benadryl didn't help it.

Am reviving this thread b/c I have some more questions and nothing has been decided yet for me b/c still have another appt and test to do.

@acer2000, when you tried Gammunex was it "Gamunex C" or is there only one kind? Also, it sounds like you had it with IV saline but in an earlier post, @boohealth said this is dangerous. I am also confused how they flush the line without saline and hoping @boohealth could explain more about this? When you say you felt "anxious and irritable" afterward, did you feel agitated or get akathisia or was it tolerable?

Also, can Gamunex be IV or SubQ so you get to choose the method? I can't quite tell from the website.

 

[acer2000]

Not sure which version. It was IVIG, not sub Q.

 

[boohealth]

Why do they need to flush your line, @Gingergrrl ? Are they piggbacking the IV? Otherwise just prime the line and administer the IV.

 

[Gingergrrl]

Why do they need to flush your line, @Gingergrrl ? Are they piggbacking the IV? Otherwise just prime the line and administer the IV.

@boohealth Sorry I was unclear and I have never had IVIG and still do not know if it will even be offered to me as I have one more test to do next week (EMG and nerve conduction test.) I was just trying to understand, why you said that Gamunex cannot be given with saline b/c others have told me they have it this way.

What does piggbacking mean? Every time I have ever had an IV, in hospital or outpatient infusion center, they flushed the line with saline at the beginning and end. (I've never had IVIG but have had IV Benadryl and a few other things.) Isn't this how they clean the line and if the line stays in, isn't this how they keep it from infiltrating?

What do you mean by "priming the line?" What do they use as an alternative to saline? Am just trying to understand in case I am in this situation in the future.

 

[boohealth]

Well, first off @Gingergrrl, your doctor should know this info and you should be able to ask him/he rather than resort to a forum.

I was not thinking of a Picc line, maybe that's what you meant. I thought you meant an IV where you get a needle/catheter in the vein, and the line is attached to it, coming out of the IVIG which is hung on an IV pole. To prime an IV like that, you simply let the fluid run out to the very tip, and let a few drops fall out (into a wastebasket preferably) to make sure there are no air bubbles left, then screw the cap back on (I think that's the case. Or tighten it). Then you just attach it to the catheter or needle once in. I don't know about picc lines. They may need to be flushed.

Piggybacking means you are running several IV's.

Here is the URL for the package insert:

http://www.gamunex-c.com/documents/...tion.pdf/4b661c9a-1229-422f-989b-5547538124b6

I read the package insert years ago when I first tried it. Here it says you can flush with 5DW (5% dextrose in water) or 0.9% sodium chloride for injection. Do not dilute with saline.

To be super safe, therefore, I'd flush your line with 5DW. If you have to flush it.

 

[Gingergrrl]

Well, first off @Gingergrrl, your doctor should know this info and you should be able to ask him/he rather than resort to a forum.

You mentioned in your original post that doctor's don't always know this info and since you had experience with it, I wanted to hear more about it. If IVIG is chosen for me, I will be reading every word of the package insert and discussing with my doctor! But often hearing other patient's experiences are vital and at times have been life saving for me, not as a substitution for doctor's advice, but an additional piece of info to investigate.

I was not thinking of a Picc line, maybe that's what you meant.

I was not thinking of a PICC line either and am hoping to use a regular peripheral line if I get IVIG.

To prime an IV like that, you simply let the fluid run out to the very tip, and let a few drops fall out (into a wastebasket preferably) to make sure there are no air bubbles left, then screw the cap back on (I think that's the case. Or tighten it). Then you just attach it to the catheter or needle once in. I don't know about picc lines. They may need to be flushed.

Thanks and I have not seen this done before. Now I understand what you meant.

Piggybacking means you are running several IV's.

Thank you and had not heard that term before either.

Here is the URL for the package insert:

http://www.gamunex-c.com/documents/...tion.pdf/4b661c9a-1229-422f-989b-5547538124b6

Thanks!

I read the package insert years ago when I first tried it. Here it says you can flush with 5DW (5% dextrose in water) or 0.9% sodium chloride for injection. Do not dilute with saline.
To be super safe, therefore, I'd flush your line with 5DW. If you have to flush it.

I had not heard of 5DW but in general I tolerate dextrose and assume this would be safe. I am actually trying to figure out how to minimize the total amount of fluid since I had pulmonary edema from one liter of IV saline and magnesium in 2014 and if I do IVIG it will require pre-meds for me to reduce ANA risk.

Don't worry, nothing I am asking is substituting for my doctor's advice, it is just very helpful to hear real anecdotal experiences of patients who have tried these treatments. Am finding IVIG to be easy to find these stories but have not found anyone yet who is doing plasmapheresis.

Thanks again for your answers and your patience with my questions!

 

[boohealth]

@Gingergrrl , are you planning to combine ivig and plasmapheresis? That's brilliant. I wrote Ron Davis (or his wife or whoever manages their fb page) several times suggesting that combo. I think it would be far safer than immunosuppressants in ME. Wiping out your B cells seems a last resort. Read Sarah Manguso's a The Two Kinds of Decay.

I don't like the pulmonary edema. What were you reacting to? Was the IV too fast? Was osmolarity okay? Be cautious. Start w low dose.

 

[Gingergrrl]

@Gingergrrl , are you planning to combine ivig and plasmapheresis? That's brilliant. I wrote Ron Davis (or his wife or whoever manages their fb page) several times suggesting that combo. I think it would be far safer than immunosuppressants in ME. Wiping out your B cells seems a last resort. Read Sarah Manguso's The Two Kinds of Decay.

@boohealth In theory, I would love to opportunity to combine two things but I have no idea yet what will be offered to me by my doctors or what my insurance will authorize. I have one more test on Tues before any decision will be made. What did Janet Dafoe or Ron Davis say re: your idea re: combining PP and IVIG?

I am not really sure how to combine IVIG and PP b/c IVIG (hopefully) add the good antibodies or gamma globulins that I need and then PP would take them out! So I assume the PP would be first and would be a series of treatments over some period of time and then IVIG would be much later.

Immunosupressants are my last resort since I am a cancer risk with this antibody and it can open you up to viruses, TB or all kinds of things I'd like to avoid. I am so hoping that I will get the opportunity to reduce these antibodies and see if it improves my ability to breathe and my lung weakness/muscle strength.

I just Googled your book recommendation and it looks really good. Am almost done reading a book called "The girl on the 6th floor" about a girl with a paraneoplastic syndrome caused by auto-antibodies attacking her NMDA receptors in her brain. After that I am reading Afrin's new book about MCAS and your book will probably be next. I've been so busy trying to solve my own illness that I haven't read a lot of books lately but want to change that.

I don't like the pulmonary edema. What were you reacting to? Was the IV too fast? Was osmolarity okay? Be cautious. Start w low dose.

It was a mystery at the time that no one could solve. My MCAS doc thinks that b/c of my mast cell disease (which was undiagnosed at that time and symptoms did not become florid until four months after that incident) that membranes are more permeable b/c of histamine so fluids do not go where they are supposed to called "Third Spacing." So IV's in someone with MCAS need to be given over 6-10 hours and mine was three hours which was way too fast.

Also the IV saline had a very high dose of magnesium mixed with it (which is a CCB) and we did not know at that time that I already had antibodies attacking the calcium channel. So it was wrong on many levels that I think would not occur this time and I would start with lowest dose possible, lowest infusion speed possible, and MCAS pre-meds. The Neuro will consult with my MCAS doc and not work in isolation (assuming he can reach him!)

 

[Gingergrrl]

I wanted to post an update that I will be able to try IVIG as soon as approved by insurance (which most likely will still be several weeks for reasons I will not bore you guys with!)

My main doc and my MCAS doc are in complete agreement that this is the next step for me. I see a new neuromuscular doc next week (since the initial one fell into the "psychosomatic" camp and was useless).

They found I have some phrenic nerve neuropathy and my MCAS doc thinks it could even be caused by MCAS itself. But even if it is caused by a virus like VZV or by all my newly found crazy autoantibodies, the IVIG can help either way (or at least that is our plan which brings me great hope.)

And the most brilliant amazing part is that I will be doing the IVIG at the cancer center for infusions at the hospital where my MCAS doc works and the nurses are specially trained to work with his MCAS patients for IVIG! They know how to do the pre-meds, the super slow infusion rates and everything needed for an MCAS patient.

I have spent the last month trying to repair damage to my medical record done by the psychosomatic camp only to learn that NONE of my long term doctors bought into it and all thought it was pure nonsense. I lost a newer doc in the process but realized it all happened for a reason and having my main doc and MCAS doc join forces on this is like the dream team and I never needed that Neuro anyway.

The new Neuro (next week) is very close with my cardio who referred me and he is 100% confident she cannot be swayed by nonsense and will look at the facts and will even re-do my EMG if necessary to see the phrenic neuropathy for herself.

My dream is that if the IVIG helps, then I can try RTX. Am certain that autoimmune stuff is now at the core of my positive ANA titer, MCAS, antibodies, and maybe even the POTS, and my worst symptom which is profound dyspnea. I think it started off viral in 2012 & 2013 but is now autoimmune.

My real dream is that I can reach the point of walking around, even if just inside our home, without a motorized wheelchair! I feel so much better when I go out but am so limited by being pushed in regular wheelchair and most places have steps which I cannot climb. Am also incredibly reactive to strong smells but not sure if IVIG could change that.

Will update this thread once insurance approves my IVIG (God willing!) and I actually get ready to start it. If anyone reading has any other thoughts on IVIG, please feel free to share with me public or privately and am hoping as always that my experience can help someone else down the line.

 

[daisybell]

@Gingergrrl thats so exciting! I'm so pleased for you.

 

[Gingergrrl]

@Gingergrrl thats so exciting! I'm so pleased for you.

Thank you and am trying to not get ahead of myself in case this falls through but am hoping it doesn't!

 

[Navid]

Thank you and am trying to not get ahead of myself in case this falls through but am hoping it doesn't!

GOOD LUCK!!!!! You deserve to get any treatment deemed necessary, you have worked so, so hard in trying to figure out your illness and treatment. Hope all things roll out smoothly and this treatment gives some (even a smidgen) of improvement. But of course total recovery would always be the Best!!!!!

Please, please keep us up to date. We could use a good news story around here.

Hugs.