New here and IVIg question

[KLW]

Hi, new here. Twelve yo DS recently dx with PANDAS by Dr. Latimer. He fits into two subsets - 1) he has been sick since day one (not a sudden dramatic change after an infection/exposure) and 2) he is immunoglobulin deficient. I've been searching for answers his entire life and finally got them after twelve years. Thankfully, he has been treated somewhat consistently with treatment for PANDAS...we just didn't know what we were treating and it wasn't quite enough. I believe it kept him from being in much worse shape than he is. Now we are on the right track.

 

We've been doing weekly subcutaneous IgG infusions for 40 weeks. I'm juggling two doctors - one in Atlanta that first suggested PANDAS to me but then really isn't up on things enough to know how to aggressively treat it (e.g. she had never heard of a Cunningham panel) and then Dr. Latimer who we began seeing last May. The Atlanta doc began the subQ infusions as a treatment for PANDAS and believes that treating with low dose subQ is equal to treating with IVIg for PANDAS - it just takes longer. (I know that the subQ was for PANDAS treatment as initially she wasn't even going to take baseline Ig sample - I insisted after reading risk of anaphylaxis if IgA was low.) After educating myself on this subject, it appears the two are apples and oranges. His IgG numbers have increased after 40 weeks (baseline was 449 and most recent is 818). But at this rate it will take another year to get his levels where they need to be at around 1300 to 1500. I don't take well to being told to be "patient" anymore...twelve years is long enough to be patient. And besides that, I understand that the higher dose IVIg is what is needed to reset the immune system. I find nothing that says low dose subQ Ig infusions over two years is going to have they same "reset" effect. He responded immediately to prednisone with tics completely resolving with the first dose. His CamKII was 187, anti-Tubulin was 1000.

 

OK, so much more to the story, but here is my current conundrum - I had a Facetime appt with Dr. L last Friday. She wants to switch from the subQ IgG to IVIg and I agree. She wants to do a high dose (2g/kg) first and then monthly 1g/kg after that. Since he has the confirmed immunodeficiency, I don't think it is going to be a problem with our insurance to switch his weekly subQ prescription to a monthly IVIg - but they may balk at the initial 2g/kg.

 

So my question: If insurance balks at 2g/kg but approves the monthly 1g/kg, does the fact that he will get several 1g/kg infusions make up for not getting the initial 2g/kg? Or is the 2g/kg imperative for the "reset". Dr. L thinks it is best just to go through her office, spend $20K out of pocket for the initial 2g/kg and then try to get "some" back through out-of-network claim reimbursement. Because of his immunodeficiency, our insurance will cover and it will only be $35 out of pocket per month with prior approval. I think the math is pretty simple here, but I just don't know if they'll go for a 2g/kg and if the higher dose is the only thing that is coming between him and his road to health, then it will be an easy decision.

 

If any others that are in the immunodeficiency camp have any experience (and hopefully success stories) with multiple, consistent monthly IVIg without an initial 2g/kg infusion, I'd be grateful for your insight.

 

Thank you - K

[Mom23boys]

No specific advice but I have a friend in a similar boat. Her son has been getting low dose IVIG and has worsened. Dr. L wants to do HD IVIG, with same concept - pay out of pocket and try to get some back. Obviously, it would need to be preapproved in all likelihood to get anything back, as IVIG (like surgery) is generally something that requires pre approval. The one thought we had is approaching it as a failure of the first treatment, which was approved, and requiring the high dose. Not sure if that would work in your case, but just a thought. You may need a doctor (either Dr. L. or the immunologist) to sign off on that concept and I don't even know if it makes medical sense but it seemed easier to me to shoehorn it under prior approval if possible.

 

My insurance (Cigna) places specific limits on the max IVIG allowed for particular conditions last time I checked. So this strategy would not work for me (they only do low dose for CVID), but might for you.

[tj21]

We got high dose IViG (1.75g/kg) covered by our PPO (UHC); the hospital ID department handled all the pre-authorizations. Ds15 (now 16) has hypogammaglobulemia too, and I think they used autoimmune encephalitis as secondary dx but not sure. His ID MD, who did the procedure in the day hospital (over 2 days) said the high dose is typical for other autoimmune issues, including Hashimotos.

 

Unfortunately we had to switch insurance, so are going through authorization all over again for a 2nd IVIG, and haven't yet heard if it will be covered or not.

[PowPow]

Unless you are wealthy and $20k does not make you blink & your ins covers the 1g/kg dosing, go for it. My daughter had both 2g/kg singly a few times over a few years. It really did not help that much. She has been recieving(among other things) 1g/kg mo thly for two years and I, in no way, see it as inflammatory or worse for her symptoms. She is much better than before thisivig regimen began. My daughter did have an overnight onset, though.

I hope this helps you.