PEX vs IVIG

[norcalmom]

Has anyone researched the risk / benefits of PEX vs IVIG? I recently saw a post that said Swedo considers PEX to be a superior treatment. Does anyone know if there was a study that shows this?

 

I am wondering if PEX has more risks thatn IVIG? More cost? Seems that most opt for IVIG.

 

For those of you that went the PEX route - how did you decide? AND is it really pex we are talking about or plasmapherisis? Seems the terms are interchanged, but I find different defintitions for these two terms.

 

Thanks!

[peglem]

Originally, our plan was to do PEX and follow up w/ IVIG, but could not get a doctor to rx PEX, so we went with IVIG only, because that was all we could get.

[tpotter]

We went IVIG. It didn't work as well for the son who had it, so we went with PEX. It was a huge difference...worked so quickly for him. We should have followed up with IVIG, but insurance initially refused it, and we didn't fight (we would now.) We were going to do PEX again (through Dr. L....as far as I know she's the only one doing it), but things fell apart at the last minute (nothing to do with him...just affected him.) We are finally getting IVIG for our kids, because PEX is not available at this time.

 

Personally, we found PEX better...worked much quicker and more complete, and honestly it scares me less, because there are no human blood products (they use a "plasma" created in the lab.) But, I do believe it needs to be followed up by IVIG. Just my opinion. But, it's kind of a moot point, unless you have found someone to do the PEX.

[norcalmom]

Wait...you had one son that did one round of IVIG and another one that did PEX?

 

And now you can't get anymore pex so you are trying to get two more rounds of IVIG? How old are/were they?

Thanks!

[norcalmom]

And why doesn't anyone prescribe pex anymore?

[LNN]

And why doesn't anyone prescribe pex anymore?

 

Pex (and we are all talking about plasmapheresis, not plasma exchange, as that is the only thing offered) is considered higher risk than IVIG because 1) there is anesthesia (propofil) used to insert a 10" catheter line into the femoral vein in the groin 2) there is risk of blood clots while you're doing the pheresis and 3) there's risk of infection during the 3 days you're in the ICU for the procedure.

 

The majority of risk with IVIG are considered "self-limiting", in that the nausea, the headaches, will resolve with time and medication. They aren't things that will lead to more serious complications. However, there is a risk, however small, that because IVIG plasma is a human product, it could contain a virus or antigen that isn't currently screened. Because it is so widely used without long term adverse effects, it is considered safer than pex.

 

It isn't that pex isn't prescribed anymore. It is used for the treatment of several diseases - it's a kind of blood dialysis. But only one Pandas doctor and one hospital use it for Pandas and that doctor is out of the office for personal reasons. So TPotter's plans were altered by circumstances, not by a decision that pex wasn't what she wanted for her boys (if I understand her situation correctly).

 

As for how do you decide which to try - pex is considered for extreme cases and for kids who need immediate relief. It anecdotally is more effective for tics. As TPotter said, many of those of us who went that route struggled with the risks inherent with the human blood aspect of IVIG. As intrusive as the procedure is, it's still just your own kid's blood.

 

However, pex is about 2 - 2.5 times more expensive than IVIG. $18K-$23K Pex vs. $8-10K IVIG. So depending on your insurance, that alone can make the decision for you.

 

Pex removes the offending auto-antibodies and Pandas junk. But it doesn't do anything to put good stuff in. IVIG doesn't remove the bad stuff. But it does flood the body with good antibodies and in ways not yet understood, seems to bind to the bad stuff, dilute it, disarm it, and possibly boost and reset the immune system to teach it better behaviors. But it is still a black box as to what exactly happens and why it works in such varying degrees for different kids.

 

There is no easy answer. Dr T suggested that pex would be good for kids with hyperactive immune systems and IVIG would be good for kids with immunodeficient ones. But I don't know that many of us know which we're dealing with. Some of it depends on your feelings about the risks of donor blood product. Some depends on insurance. A lot depends on where you live and what doctor you see. Only one doctor uses pex, so most likely, IVIG is your only option.

 

What I would love to see is true pex - pheresis to take the bad stuff out, and instead of pumping albumin back in to replace the plasma they're throwing out, would love to see them pump in donor immunoglobulin, which is true plasma exchange. But no one does that.

 

I was in the camp that opted for phereis first - partly due to my hyper-cautious aversion to the human blood product issue and partly due to insurance coverage. Pheresis last August did get rid of the tics. And daily antibiotics have kept my son strep-free for a year. But neither kept him from having "canary" episodes where he'd go into a Pandas exacerbation from being exposed to friends or family who had GABHS infections. After 2 significant episodes this past winter and one mild one in the spring, we decided we couldn't ask my 7 yo son to keep riding this roller coaster anymore without trying our other option. We did IVIG this past week (will post on a separate thread). I don't regret pheresis. It helped a lot, and the episodes this past year were, at their worst, only 50% as severe as pre-pex episodes. I don't know how I'll feel about IVIG until many months have passed. I do know that my son thought pex was a breeze (except for the last 30 min when we had to remove adhesive tape stuck to his scrotum - which he recalls vividly). But he hated IVIG and said he hopes he never has to do it again (I'm with him on that one). I don't know if there are any easy answers. You can only trust your gut and make decisions that will leave you with the least regrets.

[EAMom]

Wow... great synopsis LLM!!

 

I should add that my dd thought IVIG was no big deal (she's never had plasmapheresis to compare). She's had IVIG twice (high dose 2gm/kg each time over 2 days) in the past year. The first time there was more in terms of "turning back the pages" for the first week or two afterwards. Both times there were some flu like symptoms (headache, fever) for 1-2 days afterwards. These symptoms were well controlled with Advil/tylenol. The procedure/infusions weren't a problem at all for her. She slept for part of it...I think she was tired, plus they gave her benedryl.

[norcalmom]

LLM - Thank you for taking the time to answer all my questions it was very helpful .I hope your son is responding well to the recent IVIG - I just read your post on it. Please keep us updated.

[dcmom]

I wanted to reply last night, as this subject is near and dear to my heart.

 

I have two daughters who both had plasma pheresis for pandas in the last year. We chose this procedure over IVIG for several reasons (same as LLM), but mostly the luck of the draw, to be frank.

 

I am always hesitant to post good news (the jinx factor), but I am planning a detailed update soon. But, the girls are doing really well, and we have been really lucky.

 

I am an adamant believer that plasma pheresis is the way to go for pandas kids. Whether it needs to be followed with IVIG- I don't know. The way that Georgetown has set up the protocol, they have reduced much of the risk from the original method. It was extremely tolerable to my kids. And the biggest factor, is that in ideal circumstances, recovery can be almost immediate. PANDAS is so cruel, and, our kids have to wait so long for diagnosis- then they have to wait while trying antibiotics and steroids. I like PEX because I can't stand the thought of waiting another 3 months for recovery.

 

The problem, though, is- no one is doing pex for pandas. This has to change. We need to be able to get our kids into the hospital when they are in crisis, and get immediate relief. If, then, they need further help with IVIG, fine. I am not saying I think PEX is a forever cure (I wish i did, but I don't)- but it is quick relief, and in terms of pandas that is EVERYTHING!

 

I will be posting an update in a couple weeks (dd is sick now, want to see where this goes first)....

[tpotter]

I couldn't have said it any better than LLM and DCmom (and I know LLM, because our kids got PEX at the same time last year, and have PM'd with DCmom.) As they both said, PEX did work much faster. Actually, one of my kids got IVIG and then PEX 2 months later. The IVIG for him worked for about 1 month, and then we were back almost to square one. We had the option to go for PEX, and did, as well as doing it for my second son.

 

Both my children have had PANDAS for a very long time, and both are older (14 and 17). The 14 year old's came on suddenly at 8 years old with a sinus infection, while the 17 year old we don't know when it started (he had strep constantly as a child...we only found out it was PANDAS, because my 14 year old was more "classic", and we saw a description of PANDAS in adolescents and adults written by Dr. K (we thought he had something else.) Although it came on suddenly, and we went from dr. to dr., we didn't get a diagnosis until the beginning of 2008 (4 years later), and the doctor treating him (Dr. T.) only did it sporadically. So, we are dealing with long term, older children, and this may be different than others. Truth is, nobody knows for sure, which works better.

 

Now, back to the beginning. My 14 year old had IVIG. Said it was horrible (headache, felt awful,) and honestly, it didn't help him as fast or as completely at that time as the PEX. But, like LLM's son, he did have the "canary" effect after the PEX, and everytime he catches something, he gets increased symptoms. He can't go on this way, and although I would much prefer doing another round of PEX (to clean out the toxins quickly) and then IVIG (to help his body fight everything off) on him, it's not an option at this point, because the one PANDAS expert doing it isn't available, and it is not available to all children at this point. He was begging me not to have IVIG again, unless it was necessary, but he understands it has now become necessary. That being said, his symptoms are only about 80% as bad as they were prior to IVIG last year, and about 50% as before the PEX. But, I want him to be 90% - 100%, and I have to at least try.

 

My 17 year old has only had PEX. The year before his PEX treatment, he missed 32 days of school due to illness. I didn't know he had OCD and Anxiety until that year, and now I can look back, and say that: "yes, he had it, but it was nowhere near as bad." Rages came out of nowhere, and trust me, they were so bad, the rest of the family had to go to a hotel for the night, and leave him at home to cool down. We had his psychiatrist even call him. He had more episodes, and couldn't continue this way. PEX was an option, and we jumped at it (insurance even paid!) Everything got better almost instantly, except the OCD, which didn't go away at all for him. He got H1N1 in October, and was out of school for 1 week, but only ended up missing about 13 or 14 days of school total last year (vs. 32 the year before.) I am hoping that the IVIG will help him where PEX didn't. We would have done IVIG on him last year after the PEX, but insurance didn't approve it, and I didn't know to fight it (plus I was just wiped out, because we had serious school issues, as well to fight.) Again, I was all prepared to get him PEX and then IVIG this year again, but it is now now not an option, and we have to do something. I had his blood retested months ago with Dr. C, because of his age, symptoms (could have been something else), and how long he has had it. His CamK is up where it was before, but Dopamine 2 is somewhat down (still elevated), and all other levels are down to normal. Tells me that the PEX definitely helped. Because of his age, I want to throw everything at him, because I don't want him to have this his whole life if I can do anything about it.

 

Both my boys are on Augmentin XR 1000 mg twice daily, and Dr. L. says they will probably be on it until at least early adulthood. I accept that (she is treating as aggressively as RF, and that's fine with me.) BTW, when my 17 year old started on abx last year thanks to Dr. K, who we saw just before we saw Dr. L, who is much closer to us), his symptoms (which were horrendous, but I can't post them publicly) went away overnight (happened 3 separate times.) Even he said it was a miracle.

 

So, that's the deal. I don't know the answer to getting other docs to use PEX. I thought I had found one here, and he said he would talk with Dr. Swedo to see what she thought about PEX, but as far as I know it hasn't happened, and I can't wait any longer. Maybe he'll come through in the end. I'll keep you all posted if it happens. But, for now, we are getting the IVIG from Dr. K. Hopefully it will help my 17 year old get rid of the OCD, and my 14 year old improve him immune system so he's not always getting sick, and then having PANDAS symptoms again.

 

I'll keep you all informed.

[mom md]

We have done both. We origionally did PEX because my son had significant chorea and Dr. Latimer felt the PEX cure would be immediate and IVIG might take 6-9 months to achieve the same results. Frankly we could not loose another year. PEX was immediate for us. After 4 days, the first day home my child could sit calmly in a chair. (He could not do that before). We had 4 months of our son back to perfectly normal. Frankly I did not realize he could be as good as he was because I had not seen it for years. I do not regret it at all. It was both theraputic and diagnostic for me. It proved it was an autoimmune issue for him at that point, not an infectious one. He did relapse though 4 months later the first time his system was challenged. He relapsed though not as bad as he was pre-PEX. Chorea was his big issue before and after PEX his relapse was more anxiety/OCD. Much like a lot of PANDAS kids. I think it pushed us back down the spectrum. The procedure + ICU costs etc was $40,000. BCBS paid but Georgetown wrote a lot of it off.

We have since then dome two IVIG's. The first in Jan brought us back to our new baseline. Not as good as PEX but close. The second IVIG did not seem to do as much. We are now going gluten/casein free to see if we can get the last 5%. My immunologist wants him to do IVIG every 3-6 months and thinks we will do it again in August. She hopes he will need maybe two treatments a year plus prophalactic anitbiotics to keep him stable. She said we can do the IVIG at home from now on.

Since we know what works, I want to sit back now and wait and see. I want to see what the brain can do to heal on it's own. We had a strep exposure/infection last week so we will see how "good" his immune system behaves. The neurologist here thinks this whole thing will be chronic like any other autoimmune disease. The immunologist here thinks puberty will reset the system. I hope she is right. I may be the only parent I know looking forward to puberty!

[bmom]

Just wondering if anyone's insurance had denied coverage for IVIG, but okay'd for PEX? Our insurance denied IVIG a year and a half ago due to "experimental" for PANDAS. Do you think it would be the same for PEX?

[matis_mom]

Just wondering if anyone's insurance had denied coverage for IVIG, but okay'd for PEX? Our insurance denied IVIG a year and a half ago due to "experimental" for PANDAS. Do you think it would be the same for PEX?

I understand CIGNA covers plasmapheresis but not IVIG, so you never know. May be worth another try with your insurance to see if they'll cover plasmapheresis.

[LNN]

Just wondering if anyone's insurance had denied coverage for IVIG, but okay'd for PEX? Our insurance denied IVIG a year and a half ago due to "experimental" for PANDAS. Do you think it would be the same for PEX?

I understand CIGNA covers plasmapheresis but not IVIG, so you never know. May be worth another try with your insurance to see if they'll cover plasmapheresis.

 

You can also try this link if you feel up to arguing your case...

http://www.advocacyforpatients.org/ivig.php

 

IVIg PATIENT RESOURCE CENTER

 

 

Advocacy for Patients is creating this IVIg Patient Resource Center to assist patients whose physicians prescribe intravenous immune globulin (IVIg) to treat a wide range of illnesses, for which insurance companies may deny coverage. Our goal is to empower you by teaching you how to file a winning appeal to convince your insurer to cover IVIg for your medical needs.

 

Most often, when an insurance company denies coverage of IVIg, it is on the ground that the treatment is "experimental or investigational." Insurers may take this position when IVIg - indeed, any treatment - is prescribed for what's called an "off-label use." An "off-label use" is a use that is not listed in the labeling approved by the Food and Drug Administration (FDA).

 

As a general rule, when an insurer denies coverage of an off-label use, it is very hard to convince them to make an exception. However, we have had good success with getting coverage for off-label uses of IVIg largely because there is a wealth of medical literature supporting these uses.

 

Indeed, in a 1982 policy guidance, the FDA itself explained that:

 

Once a product has been approved for marketing, a physician may prescribe it for uses or in treatment regimens or patient populations that are not included in approved labeling. Such "unapproved" or, more precisely, "unlabeled" uses may be appropriate and rational in certain circumstances, and may, in fact, reflect approaches to drug therapy that have been extensively reported in medical literature.

 

have not used them, but have had this link pop up several times in my googling adventures.

[Phasmid]

THANK YOU FOR POSTING THIS!!!!!