Ketotifen

[Gingergrrl]

Am late to reply but for me, Ketotefin was the first med that improved my MCAS back in June 2015. I started with 2 mg and it was initially sedating but after a few days, the sedation wore off and never came back. I quickly increased to 2 mg 2x/day (4 mg total) and it was the miracle med that allowed me to slowly start eating food again. I've taken as high as 6 mg/day but only on rare occasions like when I was staying at a hotel and very reactive to everything (after a flood in our prior apt last summer).

Since starting IVIG, my MCAS has been in remission but Ketotefin is one of the few meds that I still take 2-4 mg per day and am afraid to mess with something that works so well. I used to take seven meds for MCAS, and now only taking four, and Ketotefin is one of them. It's possible I no longer need it but like I said, am too afraid to mess with something that is working! Hope this helps.

And @hixxy best wishes with the Xolair or whatever you decide to try next. Am sending positive vibes your way as a fellow dachshund lover...

 

[justy]

I started with 2 mg and it was initially sedating but after a few days, the sedation wore off and never came back. I quickly increased to 2 mg 2x/day (4 mg total) and it was the miracle med that allowed me to slowly start eating food again

wow it is amazing that you can take so much! I am completely knocked unconscious by my 3/4 mg a day, even after over a year on it! wish I could take more...but then I react like that to all sedating drugs so far. when I need to take a benzo I can only take 1/4 of one 2 mg diazepam otherwise my eyes don't stay open!

Great it has helped you so much. @Thinktank mentions most PWME cant take these kinds of high doses and I wonder what this is - I thought it was my MCAS, but obviously not because as Thinktank says most MCAS alone people can.

@hixxy - good luck with the retrial and the xolair. reactions CAN be controlled, but as you know it is trial and error finding the right drug. I didn't believe people at first that it could take months on a drug for it to make you feel a bit better, but that has been my experience.

 

[Gingergrrl]

@justy I've also had meds that I could not tolerate at any dose and when I tried Valcyte, I could not even tolerate 1/64th of a pill!

But I've done great w/Ketotefin and the MCAS meds (with the exception of a few that I tried mid 2015 before finding my MCAS doc). I wish I knew why we are all so different! All my meds remain dye free and Ketotefin is from the compounding pharmacy b/c it's the only way to get it in the U.S.

 

[justy]

All my meds remain dye free and Ketotefin is from the compounding pharmacy b/c it's the only way to get it in the U.S.

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.

 

[hixxy]

You can get Zaditen online at https://goldpharma.com/

Also can't you just use your prescriptions to buy compounded medications at a pharmacy in continental Europe?

 

[Dufresne]

I also found ketotifen to be extremely sedating. I stopped taking it after a couple days of not seeing it affect my sensitivities at all. Of course I don't think this was a reasonable trial, but I was somewhat spooked by the itching that persisted for a couple days. I thought maybe there was a rebound effect and that I might somehow be creating a much bigger problem for myself. I don't know if anybody has experienced a worsening of their sensitivities from ketotifen. Perhaps my fear is completely unwarranted.

The two things that really scare me with this disease are a serious worsening of my sensitivities and a serious worsening of my PEM. Both of which seem to be threatening as I make progress with my Lyme treatment.

 

[Gingergrrl]

@justy I hope you are able to find the Ketotefin soon and sorry to hear how difficult it has been. For me it was the first med that drastically and immediately improved my MCAS but I seem to be unique in that except for one other friend.

 

[justy]

can't you just use your prescriptions to buy compounded medications at a pharmacy in continental Europe?

Don't know why I didn't think of that - i'll look into it.

I was somewhat spooked by the itching that persisted for a couple days. I thought maybe there was a rebound effect and that I might somehow be creating a much bigger problem for myself. I don't know if anybody has experienced a worsening of their sensitivities from ketotifen. Perhaps my fear is completely unwarranted.

I also got increased itching from it at first so took tiny amounts until I slowly worked it up - the sedation though, has never worn off. You could be sensitive to some of the fillers in the Ketotifen - I know lots of people with MCAS who cant tolerate it.

For me it was the first med that drastically and immediately improved my MCAS but I seem to be unique in that except for one other friend

Ive seen quite a lot of people with just MCAS do ok with it, but less of us with M.E as well seem to.

 

[Paralee]

I'm so sorry about this. I was wondering just what/how mcas is/does and basically how bad and read this thread. And I think I have problems!
Your dystonia symptoms made me think of low calcium so I looked up dystonia calcium but all I found so far were calcium channel blocker reactions. I was really surprised I found that.

Went back again and found this, but I'm sure you all are much further ahead of me.

http://www.spasmodictorticollis.org/what-is-st/

I should have looked on down the threads, I see someone has already mentioned verapamil.

 

[kangaSue]

There's a new paper out covering a whole range of different drug options for people with MCAD;
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4903110/

It includes a helpful table of drugs to avoid too;
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4903110/table/Tab12/

 

[hixxy]

@kangaSue When you were trialling different enteral formulas did you try both Vivonex and Nutricia Elemental 028? Curious if the Elemental 028 has the really strong free amino acid odour like Vivonex? Also, how well does it dissolve? I found Vivonex horrible in this regard.

 

[kangaSue]

@kangaSue When you were trialling different enteral formulas did you try both Vivonex and Nutricia Elemental 028? Curious if the Elemental 028 has the really strong free amino acid odour like Vivonex? Also, how well does it dissolve? I found Vivonex horrible in this regard.

Yes, I've tried them both. There are both similar in their odour I think although I tube fed both and didn't really got a good whiff of either but I recall being glad that I didn't have to drink them. Not entirely sure now but I think Elemental 028 was only marginally better at dissolving than Vivonex and I had to occasionally give the bottle a shake to remix it over the two hour course of running it through the tube.

 

[hixxy]

Sadly, I still taste and smell formula when I burp, even feeding into the jejunum and my eosinophilic esophagitis absolutely hates it. I can also taste the formula circulating in my saliva. I started trialling Elecare LCP the other day (baby formula).

 

[kangaSue]

Sadly, I still taste and smell formula when I burp, even feeding into the jejunum and my eosinophilic esophagitis absolutely hates it. I can also taste the formula circulating in my saliva. I started trialling Elecare LCP the other day (baby formula).

Not something that I have had happen before with tube feeding, then again I rarely burp though.

 

[Tiger_Eyze]

Hi Hixxy,

I'm so sorry you are enduring so much!

I came across your post looking for info linking mastocytosis, EoE, myalgic encephalomyelitis, and cfs to see if they are all different permutations of over-active TNF-alpha & NF-kB pathways.

The alpha7 subunit of nAChR that you have antibodies to is the subunit responsible for the anti-inflammatory effects of acetylcholine (and nicotine) on macrophages. When activated, the receptor halts the macrophages from releasing TNF-alpha (and possibly some other cytokines), resulting in reduced downstream inflammatory signaling. [1]


I can't help but wonder if the antibody IS causing major issues for you, if it is blocking the receptor from being activated.

Could your insurance approve a therapeutic trial of IVIG for you (in the US they will do a 3 month supply with doctor letter and supporting documentation) to supress your antibody production, or better yet plasma exchange?

If your levels of the antibody are not super high, perhaps increasing the activators of nACHR could help a bit - any meds that increase acetylcholine, IV phosChol, nicotine (transdermal) perhaps.

Another option that increases acetyl choline is Vagas nerve stimulation - there is a device approved in Australia called Gammacore that isn't available in the US yet that does this through the skin. No surgery or drugs needed. It may even be approved for GI issues.

Other meds/supps that supress TNF-alpha through other means than the a7 nAChR (which may be blocked in you):
-Cucurmin from tumeric [2]
-Humira, Enbrel, Infliximab [2]
-Agonists of CB1 and CB2 receptors [3]-- (i.e. Ecchinacea, MJ, Charlotte's Web oil) Charlotte's Web is a hemp extract that comes in a topical form you can absorb through the skin that contains high levels of cannabinoids, but very low levels of THC (the chemical in Marijuana that makes you 'high')

Hopefully something from this helps you in some way!

Paper links:
1. http://www.nature.com/nature/journal/v421/n6921/full/nature01339.html

2.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3753829/

3.http://m.jbc.org/content/281/20/14192

 

[hixxy]

@kangaSue How did you go about using Individual Patient Approval to access different formula?

 

[hixxy]

Could your insurance approve a therapeutic trial of IVIG for you (in the US they will do a 3 month supply with doctor letter and supporting documentation) to supress your antibody production, or better yet plasma exchange?

IVIG *might* be accessible via my immunologist. Definitely not plasma exchange though.

If your levels of the antibody are not super high, perhaps increasing the activators of nACHR could help a bit - any meds that increase acetylcholine, IV phosChol, nicotine (transdermal) perhaps.

At this point I don't even know if/what autoantibodies I have.

Another option that increases acetyl choline is Vagas nerve stimulation - there is a device approved in Australia called Gammacore that isn't available in the US yet that does this through the skin. No surgery or drugs needed. It may even be approved for GI issues.

I've tried some vagus nerve stimulation, not Gammacore, but using TENS with ear clips and it was pretty nasty. Even non-electrical vagus nerve stimulation exercises seem to affect me adversely. Not entirely sure why as it's pretty obvious I'm in major SNS overdrive.

Thanks for the info, much appreciated.

 

[kangaSue]

@kangaSue How did you go about using Individual Patient Approval to access different formula?

Once approval was granted through the hospital Nutrition and Dietetics Dept, it was just a case of asking my Dietitian there to organise a sample or short trial of anything I thought might be o.k. as long as it was a product already available in Oz.

IVIG *might* be accessible via my immunologist. Definitely not plasma exchange though.

It's my understanding that if you can qualify for IVIG here, you can also access plasmapheresis or even rituximab.

there is a device approved in Australia called Gammacore that isn't available in the US yet that does this through the skin. No surgery or drugs needed. It may even be approved for GI issues.

The Gammacore device was or is in clinical trials for gastroparesis too. I know 2 people who have tried it but didn't have any improvement with using it.

I've tried some vagus nerve stimulation, not Gammacore, but using TENS with ear clips and it was pretty nasty.

Interferential current therapy is another option. See the entry about an external pacemaker in the blog archives from 2015 on this site http://happytummydeliciouslife.blogspot.com.au/

 

[hixxy]

It's my understanding that if you can qualify for IVIG here, you can also access plasmapheresis or even rituximab.

I'd say getting access to plasmapheresis or rituximab if you can get IVIG would only be for those having it to suppress autoantibodies. Yes?

I originally thought it would be impossible to get it for IgG deficiency but I spoke with my immunologist on the 10th and his main concern was that I wouldn't tolerate it or I'd get a lot sicker. This was also my GP's concern.

He didn't seem to have concern possibly prescribing it if my IgG subsets results come back low again. So I guess he thinks he can get it approved?

I also spoke to him about Xolair and the government basically approved Xolair on PBS at end of 2015 but they put it on hold to save a few $ and it's still on hold. I can have it when it gets taken off hold, but when that happens no one knows. The manufacturer might be doing a special deal for patients in Australia soon so they can access it cheaper but still pay for it off-PBS. Supposedly it would be a two for one deal, so effectively half price. Still expensive but I could probably manage it.

 

[kangaSue]

I'd say getting access to plasmapheresis or rituximab if you can get IVIG would only be for those having it to suppress autoantibodies. Yes?

Yes, it would only be for treating something with an antibody cause.