IVIg dose, frequency, trough levels vs OCD response

[jan251]

I have read many old threads. It seems that this forum isn't as active as it was a few years ago, hopefully because posters were successful in getting treatment for their kids. There have to be people out there in the world who might offer comments on the following from more recent experiences, though perhaps they don't read this forum.

 

I am interested in comments on medium dose (around 1 g/kg) on a more frequent basis (21 days) compared to high dose (1.5 to 2 g/kg) on any frequency basis with regard to OCD symptoms.

 

I'm especially interested in the rationale behind the 8 week regimen at 1.5, where the 8 week timing comes from. (I know where the 21 days comes from.) 1.5 every 8 wks was the protocol used in the study that came out in June, PANDAS: Baseline Immunoglobulin Levels Predict Achievement of Remission at One Year Following IVIg Therapy, but alas, these are not our doctors so I cannot ask.

 

I have a very vague understanding about how low-dose (say, 0.5 g/kg) works for immune deficiency replacement purposes and high-dose (1.5 to 2 g/kg) has been used historically for autoimmune purposes though the mechanism there may be multifactorial and is not well understood. What I don't get is whether the frequent medium-dose (1 g/kg) mechanism is a little bit of both - replacement and autoimmune - or whether it turns out that it may be insufficient for autoimmune purposes, at least for some individuals.

 

For those with experience at 1 g every 21 days or at 1.5 every 8 wks, did you have worse-before-better, turning back the pages, and when exactly? If you saw improvement, when did it begin and can you describe the course (abrupt, gradual etc.)? Did you have an immune deficiency? lyme&co ? If you remember anything about trough levels, was there a particular level when you saw OCD improvement, did improvement occur after a certain period of time above a certain trough level?

 

I'd love to hear any comments anyone has. Feel free to private message if you'd rather not post publicly. Thank you from the bottom of my heart for any thoughts on the dose/frequency comparison; you know how lonely it can get... (not to mention how my head is ready to explode)

Edited October 14, 2016 by jan251

[LNN]

I hadn't seen this article before - thanks for posting. I don't have solid answers to your good questions - only personal experience with one 1.5 g/kg infusion for my son, who had Lyme, which was undiagnosed at the time of his infusion. It was his severely negative, and prolonged, reaction to IVIG that led us to find Lyme, so a silver lining in an otherwise horrible experience. So thru my response, realize that I am biased and not a fan of IVIG as a treatment option unless the child has been thoroughly tested for triggers and just about every other treatment option has been exhausted.

 

To my knowledge, the rationale for every 8 weeks doesn't come from research. Rather, it started back in '09-'10 when Pandas families were contacting Dr Leckman at Yale and looking for ways to get IVIG. He knew that Dr B had an immunology practice close by and did IVIG, so he referred the families to Dr B and Dr B started learning about Pandas. At the time, there were only a few doctors known to our community that we could turn to for help. So families started banging down his door. Somewhere in this early period, he started recommending that the procedure be done every 8 weeks. I can't say why he advocated this. I can only say from personal experience that it wasn't based on waiting to see how the child responded to the first infusion. It was something he felt should be done every 8 weeks regardless of response. In contrast, Dr K, Dr L and Swedo were all recommending only one infusion and then monitoring for at least 3-6 months before deciding if another infusion was warranted. Was either position rooted in research? Probably not. There was very little research on Pandas and only one study on Pandas and IVIG. It was an educated guess as far as I can tell, for each position.

 

For other autoimmune diseases where 1.5g/kg IVIG is used (e.g. Hashimoto's), only one infusion is generally done. Supporters of Dr B feel that his approach is right and has helped their children a great deal. Skeptics point to disappointing results from IVIG studies and a potential profit motive for such frequent treatments. There still doesn't seem to be enough research to support one approach over the other, or even to support IVIG at all. It surely helps some kids, and in some cases, dramatically. In other cases, it seems to do nothing or make things worse.

 

Maybe this was the thing that prompted the study you posted. But I have two, non-scientific, biased quibbles with this paper. First, the paper cites 100% improvement. What does improvement mean? I know it says it's based on clinician assessment. But this obviously lends itself to bias - not only is it impossible to assess a Pandas child in a 20 minute visit, there is also inherent bias in a parent's reports. When I spent $$$ on plasmapheresis for my son (prior to IVIG), I wanted so badly for it to work. I minimized the negatives and hyper-focused on any little thing that gave me hope. So I'm not sure how much stock I can put into 100% improvement.

 

Second, the paper suggests that IG levels are a good predictor of outcome. I would also wonder whether specific triggers/infections influenced the outcome. Do kids with Lyme or mycoplasma react more poorly than those with a strep trigger? Does it matter whether the child has an infection that's resolved or if it's still active? What other treatments were being given during the 12 months? If antibiotics or steroids or CBT were being used, did these influence outcome? In other words, would the kids who got better have gotten better regardless of IVIG?

 

As I started out saying, I don't personally support IVIG as a therapy but I do recognize that it's been very helpful for some kids. I just don't know that this paper, or the NIMH study, make the picture clear as to what dose and what frequency might be helpful, and for which subset of kids.

 

So to your question - I don't think anyone knows if 1 g/kg would be better, worse or the same as 1.5 g/kg. But if you do proceed, my personal recommendation would be to do one treatment and then listen to the body before deciding whether a second or third infusion is needed. It's a very personal - and lonely - journey.

[jan251]

Thanks LLM! I agree with your thoughts about the study and your ideas for further study, especially the part about the status of infections going in and what other treatments the patients were receiving. I imagine it's difficult to design a study where there are so many individual variables.

 

I did a little more reading and found a few older threads that I'd like to collect here for future reference, adding more as I find them. However, they're definitely old, and I'm still interested in learning the more recent thinking on IVIg dose and hearing about more current experiences - perhaps the study above is the most I'll find. I really want to understand the differences of opinion between certain docs on dose and frequency (we need ivig regardless for an immune deficiency).

 

IVIg dosage and how often

High Dose IVIG 2gr per kilogram

IVIG numer two

Repetitive IVIG

Edited October 15, 2016 by jan251

[Gpookie]

My kids did great on .5g/kg per month after the HD didn't hold. That together with the right abx combo solved it....