Ketotifen

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Oh, so you have IgG deficiency (in the US we call it CVID)?? Horrendous GI inflammation is actually a side effect of the immune deficiency (I have an igG subclass deficiency for which I get IVIG).

I had really bad diffuse GI tract inflammation that wasn't responding to meds. My GI docs had referred me for surgery, but I happened to mention it to my Immunologist who said it is guidelines to increase my IVIG dose until my GI issues resolve. Well, he did and now I'm off all GI meds and I didnt need surgery.

Regarding side effects of IVIG, they are typically related to the rate of infusion, so if you can't tolerate premedications (typically some NSAID or tylenol vs. a corticosteroid & an antihistamine), they would just have to run yours very very slowly, maybe even split the dose into smaller amounts and infuse every day or two and titration up as tolerated.

_________________

As to why the Vagas nerve stim probably didn't work - it causes it's effects through the very receptor you have antibodies against (a7 nAChR). So if the antibodes are blocking the receptor strongly, Vagas nerve stim won't work.

You would have to use the things I listed that lower TNF-a without using the a7 nAChR: tumeric, Charlotte's Web oil, ecchinacea, MJ, etc.
 

hixxy

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Does anyone know how comparable SCIg is to IVIg? Seems much less risky to start off on for someone who doesn't tolerate treatment well.
 
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Awesome! Best of luck! :)

And just interesting info - looks like just cannabinoids stabilize mast cells too! Maybe Charlotte's Web oil & MJ could be alternatives to Ketotifen that are absorbed orally, transdermally or via inhalation. Cool!

(Credit to @psychodelic on the ME/CFS Gen discussion forum.)
Anti-inflammatory potential of CB1-mediated cAMP elevation in mast cells
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1138953/
 
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Depends on what version of subcutaneous IG you do. Standard subcutaneous (Hizentra or Gammagard, etc.) might be a good way to start.

Different Subcutaneous Igs:

1. HiQvia- you inject an enzyme to allow the infusion of a months worth of IVIG under the skin in a few hours. You end up with a bubble of fluid that absorbs completely in 2-3 days. You get the same absorbtion as IVIG over 2-3 days. You start with a ramp up protocol, infusing small amounts frequently until you end up infusing once a month.

2. Standard subcu: use Hizentra (it's more concentrated, thus less fluid volume) if you don't have much subcutaneous fat on your hips or tummy. You infuse smaller doses once per week. Easy to do yourself. You get steadier trough levels of IgGs but lower peak numbers. Annecdotally, not as helpful for lung infections.

3. IV is an infusion once every 3-4 weeks (can do lower doses more often if better tolerated). You get higher peak levels right away, but the levels drop over the 3-4 weeks.

I started with subcutaneous and switched to IV. IV worked better for my lung infections, subcutaneous didn't help much with them - others have said the same. I've had side effects from both subcutaneous and IV, but for me, I only got side effects when I used Tylenol instead of Aleve/motrin as premedication.

My friend is on HiQvia and had worse side effects on it than on IV or subcutaneous Hizentra (she only used Tylenol and benadryl), but they have gotten better with more infusions.

Side effects seem to vary by person and infusion rate. It might not be a bad idea to try standard subcutaneous (perhaps not HiQvia, because it's basically like IV) first.

Hope that helps a bit!
 

Gingergrrl

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@hixxy I am doing my IVIG as I type this and do a very slow infusion speed, in a three day split dose, with pre-meds and have no problems. So it definitely can be done (in people who don't tolerate meds well) and feel free to PM me if I can help.
 
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Oh, so you have IgG deficiency (in the US we call it CVID)?? Horrendous GI inflammation is actually a side effect of the immune deficiency (I have an igG subclass deficiency for which I get IVIG).

I had really bad diffuse GI tract inflammation that wasn't responding to meds. My GI docs had referred me for surgery, but I happened to mention it to my Immunologist who said it is guidelines to increase my IVIG dose until my GI issues resolve. Well, he did and now I'm off all GI meds and I didnt need surgery.

Regarding side effects of IVIG, they are typically related to the rate of infusion, so if you can't tolerate premedications (typically some NSAID or tylenol vs. a corticosteroid & an antihistamine), they would just have to run yours very very slowly, maybe even split the dose into smaller amounts and infuse every day or two and titration up as tolerated.

_________________

As to why the Vagas nerve stim probably didn't work - it causes it's effects through the very receptor you have antibodies against (a7 nAChR). So if the antibodes are blocking the receptor strongly, Vagas nerve stim won't work.

You would have to use the things I listed that lower TNF-a without using the a7 nAChR: tumeric, Charlotte's Web oil, ecchinacea, MJ, etc.

I was just (finally) diagnosed with CVID - I have low IGG and my GI inflammation is so bad right now - waiting for insurance to approve the ivig (they said will take at least another 3 weeks). Everything I eat kicks off a (loud) volcano in my stomach and all that follows. Did anything help your digestion before the ivig? Now I understand why all of the treatments I have had for lyme and infections only work for a short while while I am being treated- what a rollercoaster. And why when someone comes near me who is sick I have been doomed. How long did it take the ivig to start helping if you don't mind sharing. Did you have infections that still needed other treatments? I am guessing that there might be more to my immune system treatments than just ivig as the doc did a ton of other tests for things like B-cells and T-cells - 20 tubes - to understand exactly what is happening with my immune function. I had a lot of blood work results when I got there but other than igg, subclasses and infections this is all new to me. I am thankful to have finally figured out that there is clearly a big immune system piece.
 

kangaSue

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I was just (finally) diagnosed with CVID - I have low IGG and my GI inflammation is so bad right now - waiting for insurance to approve the ivig (they said will take at least another 3 weeks). Everything I eat kicks off a (loud) volcano in my stomach and all that follows. Did anything help your digestion before the ivig? Now I understand why all of the treatments I have had for lyme and infections only work for a short while while I am being treated- what a rollercoaster. And why when someone comes near me who is sick I have been doomed. How long did it take the ivig to start helping if you don't mind sharing. Did you have infections that still needed other treatments? I am guessing that there might be more to my immune system treatments than just ivig as the doc did a ton of other tests for things like B-cells and T-cells - 20 tubes - to understand exactly what is happening with my immune function. I had a lot of blood work results when I got there but other than igg, subclasses and infections this is all new to me. I am thankful to have finally figured out that there is clearly a big immune system piece.
Common variable immunodeficiency (CVID) is characterized by a host of gastrointestinal lesions that can mimic a variety of other conditions.
https://www.ncbi.nlm.nih.gov/pubmed/18043034
 
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Back to the topic of the thread, Ketotifen is crucial for me in staving off horrible stomach ache attacks that were labeled IBS-D forever but recently OMI said it's likely MCAS.

There is also evidence it heals leaky gut. @Hip has the source for that.
Ketotifen is a great drug.
 
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Awesome! Best of luck! :)

And just interesting info - looks like just cannabinoids stabilize mast cells too! Maybe Charlotte's Web oil & MJ could be alternatives to Ketotifen that are absorbed orally, transdermally or via inhalation. Cool!

(Credit to @psychodelic on the ME/CFS Gen discussion forum.)
Anti-inflammatory potential of CB1-mediated cAMP elevation in mast cells
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1138953/
Anecdotally the only things that have ever helped my MCAS caused stomach cramp attacks were pot and other mast cell stabilizers. But pot was especially useful because of its very quick onset. No medical use though says my backwards ass state
 

keenly

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I wish I could get dye free, compounded meds. As it is in the UK mast cell patients have to play around with brands etc until they find one they can tolerate, then just pray your pharmacist can still get it for you. I can only tolerate one brand of Loratidine and one brand of Ranitidine - but sometimes the pharmacist cant get that one and the other ones make me itch like mad - we cant work out what the fillers are that are doing this.

Recently there was a shortage of Ketotifen in the UK and it has been very difficult - I had a few very stressful days calling all the pharmacies in a 60 mile radius to see who had some that I could go and get. I have heard you shouldn't stop taking it abruptly as people can have rebound reactions...compounding pharmacies would be amazing - wish we had them here.
:thumbsup::):bang-head::bang-head::bang-head:

Yep!!

I am sure I have Mast Cell issues. I want to try some of the meds, but the European versions have fillers, lactose, Titanium dioxide, Maize starch etc. Real shame.
 

kangaSue

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Back to the topic of the thread, Ketotifen is crucial for me in staving off horrible stomach ache attacks that were labeled IBS-D forever but recently OMI said it's likely MCAS.
I can give you another plausible explanation for it if food gives you pain shortly after eating, intestinal ischemia (chronic mesenteric ischemia, insufficient blood flow getting to the bowel for the digestion process).

The episodes of ischemia/reperfusion injury from this stimulates GI mast cell activation and ketotifen is said to help with this, both for curbing pain and settling diarrhea, but does it doesn't work for me.
 

hixxy

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I'll be trying Xolair at my next appointment (not for 2 months). I'm a bit apprehensive given that every other mast cell stabiliser has made me sicker. I also still have no definitive answer on if I can get access to SCIG or IVIG. My allergist/immunologist is going to speak with another of his colleagues about it before my next appointment.

So the saga continues ...
 

Gingergrrl

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@hixxy Good luck with the Xolair and keep us posted. The infusion center where I do my IVIG also has patients who come in for Xolair injections. I have never done it myself, and ended up not needing it, but if my MCAS had not gone into remission and I stayed as acutely allergic as I was in 2015, I would have considered it for sure.
 
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Good luck!! Has anyone tried PEA (palmitoylethanolamide)? I read it is a mast cell stabilizer that also stabilizes glial cells. I just ordered some, but I'm curious if anyone has already tried it
 

hixxy

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Good luck!! Has anyone tried PEA (palmitoylethanolamide)? I read it is a mast cell stabilizer that also stabilizes glial cells. I just ordered some, but I'm curious if anyone has already tried it
Gave me weird brain side effects but I can remember the specifics as it was a about 3 years ago now. I didn't take it long enough to see if it would help in other ways.
 

debored13

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Am glad you realized that and I do not tolerate preservatives in food but for whatever reason, I have no problems with the eye drops and they make it easier for me to wear contacts (less eye itching and inflammation).



It is a huge dose unless it was a very large rat LOL.



This is so strange to me and where I live we have compounding pharmacies on practically every corner and they all do great business. We even have them for veterinary meds for pets. I remember you mentioned this before but can't remember why they are banned in the UK?



Everything has so many names but the first one is like Cromolyn or Gastrochrom, Montelukast is the generic for Singulair, Rupatadine is not available in the US but may be in Australia (I have no idea), and Xolair is the brand name for Omalizumab. Not sure if any of this helps anyone but hoping it might!

Best wishes to @hixxy and keep us posted.
I am trying cromolyn sodium but so far has not helped my response to mold at all. Considering just switching to ketotifen or rupatadine, but rupatadine seems pretty expensive
 

Gingergrrl

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I am trying cromolyn sodium but so far has not helped my response to mold at all. Considering just switching to ketotifen or rupatadine, but rupatadine seems pretty expensive
@debored13 From my experience, there was no medication that helped my MCAS until I removed myself from the rental with the toxic black mold. I do not know if you are actually living with toxic black mold (stachybotrys) but if we were to assume that you were, I am not sure if any of these meds would work until you are away from that environment (what we were discussing via PM).

In our case, we had to move and get rid of our belongings and then I did a long mold detox with nebulized glutathione (from a reputable compounding pharmacy w/my former mold doctor's supervision) and also took mold binders. I don't believe that any of the MCAS meds would have helped me without doing that step first.

But as a separate issue, I did not tolerate any form of Cromolyn/ Gastrochrom and Ketotifen was a miracle drug for me (in 2015). I have never tried Rupatadine which is not available in the US (but I'd assume you could get it from a Canadian or other overseas pharmacy). I used Zyrtec as my H1 blocker and Atarax as my rescue med (at that time). Hope this helps!
 

debored13

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@debored13 From my experience, there was no medication that helped my MCAS until I removed myself from the rental with the toxic black mold. I do not know if you are actually living with toxic black mold (stachybotrys) but if we were to assume that you were, I am not sure if any of these meds would work until you are away from that environment (what we were discussing via PM).

In our case, we had to move and get rid of our belongings and then I did a long mold detox with nebulized glutathione (from a reputable compounding pharmacy w/my former mold doctor's supervision) and also took mold binders. I don't believe that any of the MCAS meds would have helped me without doing that step first.

But as a separate issue, I did not tolerate any form of Cromolyn/ Gastrochrom and Ketotifen was a miracle drug for me (in 2015). I have never tried Rupatadine which is not available in the US (but I'd assume you could get it from a Canadian or other overseas pharmacy). I used Zyrtec as my H1 blocker and Atarax as my rescue med (at that time). Hope this helps!
This is not what I wanted to hear, but what I needed to hear I think... Yeah I think it may be fruitless to use mcas meds to deal wtih mold while living in it