Would you try Rituximab?

[sillysocks84]

hi @sillysocks84 ....he got it after mono like many of us....
xox

Thank you for letting me know. I spoke to someone who was trying galantamine to stimulate the vn. Her heartrate dropped about 20 beats a minute which was good for her but her other symptoms were there still. I always wonder if it's because it was only tried for 2 months. But again, some may be more like your friend. It's confusing.

 

[sillysocks84]

@sillysocks84 Sorry I missed the above post so am responding separately! Let me know what happens if you try the vagal nerve stimulation although the idea scares me and I have heard stories of it going wrong for people. I have a TENS unit for pinched nerve in my neck but I do not put it on the Vagas nerve itself.

And I couldn't agree more that not knowing when you will react to food is scary. It has been the scariest part of this entire illness for me and I was sick for 2+ years before it started and progressed with a vengeance. I have not heard of vagus neve stim for MCAS but I have not heard of many things!

I will try to find links later I hope you have a good day!

 

[ScottTriGuy]

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3388134/

@ScottTriGuy , I didn't know about that particular one. I'll have to think about it. I think it's good to start with something gentle and build up if no ill effects happen. Thanks for sharing that!

If memory serves, the PoNS will be available for sale in Canada in summer 2016 - not sure if sales will be to public or just health practitioners.

 

[Anne]

they definitely are nowhere close to having full results (as far as i know they have just recently begun). this is just anecdotal from a discussion with my doctor, who is also fielding patients for the Klimas Rituxim study. I think they have just begun, but when I asked her if it was worth it for me to come back to NYC to take part in study, she said 1) she wouldn't want me to uproot and get placebo; and 2) the results are mixed thus far.

I will give you my doc's name if u like (actually i just noticed she is named in my account info), she is an NYC CFS specialist, if u are a longtime patient I'm sure you could guess. But I would not want to disclose our conversation in a public forum, as it was private and personal.

Is there a clinical trial protocol for this study ?

Also, I presume if it is placebo controlled then it is blinded also. Therefore there would be no results available yet.

The mixed results may have been pertaining to the phase 2 Norway trials ?

It sounds very strange, how can she refer to results if the study is just starting? Firstly, as @BurnA says the study should be blinded, so there would be no way of knowing anything about results until the blinding is uncoded, which should happen a long way in - preferably years. Fluge and Mella have reported delayed effects in their two latest studies (altogether around 30 patients, if I'm not mistaken), even more of a delay than is usual in other autoimmune disorders. They have reported to me in an e-mail that effects can be expected to kick in from month 5 all the way up to month 11 (that's the beginning of the effect). A good study should then follow the patients for a long time, in the Norwegian Phase III study it's 2 years.

So I really don't understand what Levine means? Any chance you could ask her some more, @NicholasNYC?

If she was referring to the Norwegian studies which have been published so far, the results have been that around 2/3 of ME patients have responded to Rituximab and seen a positive effect (differing in size and duration, dramatic for some). I hear anecdotal reports that Kogelnik is getting less great results, but I haven't seen that published or verified.

If anyone sees a clinical protocol (on Clinicaltrials or elsewhere), let us know!

 

[NicholasNYC]

i really should not have quoted my doctor out of context without her permission. i think what she was referring to was other previous patients who have tried rituxim. she was not referring to any conclusive, definitive, final "results" of the current study. she has a large amount of longtime patients, a few of whom have tried rituxim previously, separately of this study, all to various effect. i would encourage anyone interested in rituxim to contact drs. levine or klimas personally.