Has anyone tried the biologics, e.g. Enbrel, Kineret, etc?

[momto2pandas]

I've had two burning questions since I joined this forum. The first is whether anyone has experience with biologics for treating PANDAS, e.g. anti-IL-1 drugs (Kineret), anti-TNF-alpha drugs (e.g. Enbrel, Remicade, etc.)? I have never seen anything about trials of these drugs for PANDAS, but I'm not sure why not. Granted these drugs are nothing to mess around with lightly, but they are taken by children with other autoimmune diseases (e.g. RA), and PEX/IVIG are nothing to mess around with lightly either. IL-1 and TNF have been implicated in disruption of the BBB (example: http://www.neuropsychiatryreviews.com/08de...lood-Brain.html - you can find many others - the example of trying celecoxib at the bottom is, I think, not a good one - that is not the drug I would have tried; http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1892817/) and are potent inflammatory mediators, so from my point of view it would stand to reason that drugs inhibiting these cytokines could be extremely helpful. I worked on the development of these anti-inflammatory biologics for RA for many years and have never fully understood why they would not be applicable to PANDAS as well, when they work for such an incredibly broad spectrum of other autoimmune diseases. Has anyone ever had this discussion with their doctors, or tried it? I am no expert in the pathogenesis of PANDAS so I may be missing something obvious. Some of you seem to have much more expertise on this then I do, so I would be curious if others have thought of this possibility and rejected it for a rational reason.

 

My other burning question has been: Am I really Patient 0? I am surprised that I seem to be the only PANDAS parent on this forum who had PANDAS herself. Am I right about that? Granted in my generation there was no term to apply to it, but I can't be the only 40-something out there whose pattern eventually got noticed, investigated, and "diagnosed", even if the diagnosis didn't have a name. There must be someone else out there...?

[MichaelTampa]

Don't know anything about the drugs, new to the PANDAS discussion myself, but, I am 42, no kids, but it is looking a lot like I have PANDAS. Still awaiting the CamK blood results which might give a little more evidence. I had some issues as a child, but none that resulted in any fancy diagnosis. I did just get diagnosed with Tourette's about a year ago, as problems have gotten worse for a variety of reasons.

 

You were diagnosed with "something" as a child? Did the PANDAS go away? How? When? Or you still have it?

 

Michael

[momto2pandas]

Here is a study of Enbrel in anxiety/depression in psoriasis patients. This is the kind of result I've been aware of anecdotally.

 

http://pharmalicensing.com/public/news/vie...Quality_of_Life

 

Here is another interesting bit. When this boy's infliximab stopped working, he developed PANDAS (looks like to me anyway), which then resolved after a spell on adalimumab.

 

http://psy.psychiatryonline.org/cgi/content/full/50/4/425

 

 

 

 

 

I've had two burning questions since I joined this forum. The first is whether anyone has experience with biologics for treating PANDAS, e.g. anti-IL-1 drugs (Kineret), anti-TNF-alpha drugs (e.g. Enbrel, Remicade, etc.)? I have never seen anything about trials of these drugs for PANDAS, but I'm not sure why not. Granted these drugs are nothing to mess around with lightly, but they are taken by children with other autoimmune diseases (e.g. RA), and PEX/IVIG are nothing to mess around with lightly either. IL-1 and TNF have been implicated in disruption of the BBB (example: http://www.neuropsychiatryreviews.com/08de...lood-Brain.html - you can find many others - the example of trying celecoxib at the bottom is, I think, not a good one - that is not the drug I would have tried; http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1892817/) and are potent inflammatory mediators, so from my point of view it would stand to reason that drugs inhibiting these cytokines could be extremely helpful. I worked on the development of these anti-inflammatory biologics for RA for many years and have never fully understood why they would not be applicable to PANDAS as well, when they work for such an incredibly broad spectrum of other autoimmune diseases. Has anyone ever had this discussion with their doctors, or tried it? I am no expert in the pathogenesis of PANDAS so I may be missing something obvious. Some of you seem to have much more expertise on this then I do, so I would be curious if others have thought of this possibility and rejected it for a rational reason.

 

My other burning question has been: Am I really Patient 0? I am surprised that I seem to be the only PANDAS parent on this forum who had PANDAS herself. Am I right about that? Granted in my generation there was no term to apply to it, but I can't be the only 40-something out there whose pattern eventually got noticed, investigated, and "diagnosed", even if the diagnosis didn't have a name. There must be someone else out there...?

[EAMom]

I think Bronxmom2 had PANDAS...there are others who have posted too, I just can't remember the names!

[momto2pandas]

Another interesting bit - a patent.

 

http://www.patentstorm.us/patents/6982089/description.html

[britneymag]

I think that I had Pandas as a child. Nothing was ever diagnosed, but I had several tics that would come and go and I am remembering more and more each day little things that i did that I would now classify as OCD. I had strep a lot as a child and now remember having infentigo for months on my upper lip when I was young. I also had rheumatic fever when I was 17 so I had a bit of everything. I have tics now but mostly when dd is not doing well. I think it is just stress now.

 

Melanie