Plasmapharesis before IVIG

[bobbynangie]

Has anyone had plasmapharesis before IVIG?

My 12 year old son had pharesis last June, did well but slowly the OCD is taking over. Doctor says IVIG next after she gets bloodwork back. Also He has been on vitamin D 50,000 units weekly for 8 months now. level was 6 when started now up to 11.5. Anyone else been so low? Also mycoplasma at 493. Any thoughts would be

appreciated. TJ's MOM

[mdmom]

I would recommend talking to your doctor about knocking out the infection(s) before you jump into a costly procedure like plasmapheresis. It's imperative to lighten the load on the immune system if you are going to try to regulate it with something like IVIG. And plasmapheresis may provide temporary relief from symptoms, but it will not address infections permanently.

[PowPow]

My child had ivig 4months after pex. Symptoms improved dramatically post pex. Anorexis began very suddenly 4months later. Ivig helped, but slowly over a few months.

[LNN]

Curious why you're giving a very high dose of D (hopefully D3 and not D2) but only once a week? You might see better results if you did 10,000 IUs daily. Also, vitamin K helps with D3 absorption.

 

My son had Pex and then IVIG 10 months later. Pex helped for a time but then he slid. Like your son, he had a chronic infection (my son had undiagnosed lyme) and IVIG was a negative experience - it likely triggered a severe herxheimer response that took months to recover from. Others have found IVIG to be helpful even with an ongoing infection. I think some of the answer depends on your financial/insurance situation. With an active myco infection (and have you tested for lyme?), one IVIG probably won't be the end of your story. If the cost is going to be out of pocket, there are other ways to consider.

 

If it were me, I'd get those D3 levels up and get those Myco levels down before doing IVIG or you may not see the improvement you'd hope for. If you do proceed with IVIG, make sure you have a post-IVIG plan to manage inflammation and herxing. To boost a weak immune system with HD IVIG could seriously stir the pot for awhile.