Xolair

[perovyscus]

I think this is the safest next route. There are some good roles for IgE, but it's not really a primary immune responder. Very small part of the immune system.

Have no idea why this would work, except that I have high IgE, and allergies cause fatigue. Have allergies to dust mites.

One or two anecdotal reports of it working for CFS.

Elevated IgG
Elevated IgE
Low Plasma Dopamine
High DHEA/Low FSH
Obviously, elevated EBNA EA IgG to EBV.

That's my profile. I've had over 50 blood tests for the common culprits of CFS, just assume they are negative, CMV, HHV (interesting), CPN, Lyme etc.

 

[Dr. Yes]

Hey perovyscus

Did you ever try the Xolair?
My allergist recently suggested it as a possibility and gave me all the info, forms, etc... I also have high IgE and allergies to all kinds of things, esp. molds (and pollens, dust mites, etc) which have grown worse and more numerous since CFS.. Plus a weird allergic asthma that doesn't respond to asthma medications... Allergies definitely trigger severe CFS symptoms in me; I can usually tell the mold and pollen counts for the day by my level and type of cog.symptoms and "fatigue"! So she suggested Xolair, but cautioned that it costs so much insurance probably won't cover it, and there is an increased risk of cancer and anaphylactic reactions, infections, etc...
I don't like messing with the immune system in this manner but the allergy-CFS connection is driving me nuts; don't know what to do..

Do you have any more info on these matters? How high is your IgE, btw? Mine is around 2000 by the standard test. Did you find out about it from a doctor too?

As for how it might help, I would assume it would only help if CFS in general, or a specific case of it, has a strong autoimmune component that is related to allergies... Lots of people talk about the relationship between food and maybe mold allergies and CFS, so I suppose the utility of Xolair would be there, since it would block the IgE binding to allergens and (supposedly) nip the allergic response in the bud... Although I'm not clear on what people theorize about mold..generally they talk about mold toxicity, not mold allergies. Anyway, the way I feel just from pollens adds a lot to my overall CFS symptoms, so reducing that effect would probably help...

But it still seems a bit risky to treat a disease that has unknown immunological mechanisms with a basically experimental immunological treatment, doesn't it?

 

[Sammy]

Yeh I would like to know also as I also have high IgE levels an allergies a specialist said it would deffinatly help my CFS, but yeah very expensive drug.

Cheers!

 

[Lauren Ide]

Hi there,

Have any of you decided to try Xolair? I was recently Dx with autoimmune urticaria after 11 years of symptoms, in addition to my ME. I haven't had the IgE blood test yet because I don't have insurance. My new allergist/immunologist believes Xolair is the right treatment for me but he was a little dismissive about ME in general. He didn't *not* believe me, but also didn't seem to know much about it.

I've traditionally had severe allergies, MCS, molds, airborne, pets, fragrances, tons of foods on and off over the years, but it was the autoimmune hives that kicked my butt and made my ME flare-ups worse. (although the ME symptoms happen independently of the autoimmune flare-ups) Oh, and positive for EBV too.

I'm concerned about taking Xolair without more information about how it treats ME/CFS folks, but I guess I could be waiting a long time for a study to show it's safety or efficacy for ME. ;-) Yes, IgE is only a small part of the immune system, and I can see how it can help if cytokine activity is reduced....but I'm still wary.

Thanks for any thoughts,
Lauren

 

[searcher]

I haven't tried xolair but a good friend of mine with ME and autoimmune urticaria has. I know it helped her urticaria out a lot but don't think it helped or hurt her general ME symptoms. I believe you can get it free from the manufacturer if you don't have insurance.

 

[perovyscus]

Xolair lowered my cortisol dramatically, an effect that was unexpected, but certainly buried in the literature. This reaction is extremely atypical, but I had such adverse effects I have been unemployed since this post.

I hesitate to even mention it, but that's what happened. I had good success with rush immunotherapy for my allergies, I've reduced allergic symptoms by I'd say over 90% in conjunction with having my tonsils removed.

 

[maryb]

perovyscus
so sorry to hear you've been unemployed since the last post.
was it the Xolair that caused the adverse affects?

 

[Lala]

IgE goes up when parasites are in the body too, so it is not necessary sign of allergy.

 

[perovyscus]

I'd say Xolair did cause problems directly with lowering my cortisol, which I was unprepared to treat. I've had paradoxical reactions to almost every drug, so this event was not surprising. That being said, I had mild asthma, not moderate-severe asthma. It could improve those patients lives dramatically.

I did my trial based on one anecdotal result of CFS improvement on the entire internet, so now there's two trials!