I keep meaning to post about this, so here it is...

Back in November I started taking Ketotifen.  I had it compounded at Clark's Pharmacy in WA as many here have done.  The process of them getting the prescription from my doctor's office was a horrible comedy of errors, but it eventually happened.  Mark Clark was super nice about explaining that it will be heavily sedating at first, and then again each time I increase dosage.  He also said it can take months for any improvement, and as much as six months or even a year to get the full effect.

I started with 1mg once a day and I was completely wiped out for nearly a week by it.  The next week I went to twice a day.  This time it only took maybe four days to get back to somewhat normal.  The third week I went up to three times a day, which I then stayed at.  It still made me sleepy a few hours after I took each dose, but now after over six months, I just get groggy a few hours after the doses, not to the point I can't stay awake (the more reactive I am at the time, I think, the worse this is).

The important issue: Has it helped?  I think it has, but it is so hard to tell.  I haven't had nearly as many BIG flares while on it, and when I have, they have lasted a few days rather than a few weeks.  The thing is, during this same time I realized that I was reacting to even more food triggers, so I also restricted my diet to super-safe foods only.  This may have contributed to the reduction in flares and the length of flares.  I'm definitely not finding myself able to expand my diet, which is a real issue for me.  I thought it might have helped with my wheezing, but now that the weather has warmed up, that is back if I exert myself at all or am exposed to any triggers.

Here's what I would like to ask other Ketotifen users about:  It seems to my husband and I, though we can't be sure, that my emotional state has changed some.  We don't know if that is due to the illness itself, my limited diet, the exhaustion of 10 years of this crap, or the medication, but it seems to be worse while on Ketotifen.  The main changes are that I am vastly less patient with people than I used to be, and snap at them when they're just being idiots.  The other change is that I feel rather emotionally detached.  I can feel sad and I can laugh and enjoy something, but I just don't feel emotionally engaged.  Have any of you experienced this from Ketotifen, or from any of your other meds?  I had a similar, but far worse, effect when I tried Singulair, such that I had to stop it immediately.

My bottom line:  I'm not sure it has helped enough to justify the side effects, cost, and aggravation of ordering it.

Hi Kat,

It has been a long time since I have been on here.

I started Ketotifen a year ago.  I also take 6 vials of cromolyn a day and 40 mg of Pepcid 2x a day.  I take alprazolam as needed as I do not tolerate Benedryl.

I find it interesting that you get tired on the Keto (most do) and you  feel more irritable.  I actually get hyper from it and feel calmer than I even have in my life.

For some reason I have not been able to tolerate any other H1, and believe me, I have tried them all.  I have compounded them with every safe thing I know and yet no results.  Because the Keto has a strong H1 in it, it has helped me with itching, burning sensations, stabbing pain and my brain fog!  But when I flare even a little, I get super dizzy on it and have to premed with my cromolyn and alprazolam before I can take it.  

I have found that if I back off of it when I start to flare, it seems to help.  I increase some of my other meds to 'balance' things out.  At first Pepcid seemed to be mostly for my stomach pain, but now it will shut down a reaction as well.  

This is such a complex disease!!  I too seem to have more trouble with foods while being on this.  I have tried to add to my 6-8 safe foods and I can tolerate about a teaspoon of some new things and that is it.  But after the second day, I start to react when I eat them.  It's almost as if they build up in my system and are just to much for my body to handle.

Dr. Afrin recommended that I take up to 4 mg 3x a day if I needed to.  I would be crawling out of my skin, but it is good to know I can increase my dose if I am in trouble.

The one thing I have noticed the most since being on it, is that my instant recall (memory) has improved a lot!  Also a lot of vocabulary that I lost is coming back.  But there again, when I add a new food or do too much in a day, the fog comes right back.

I don't know if my response is helpful or not.  I worked outside all day and the 'fog' is kind of bad tonight.

I hope this finds you doing well.  Take care.  Lynda
ohhh   Have you emailed your order in?  Clark's will send you a list of questions, (I keep it in my medical file).  I just list my name, address, dosage, etc and receive it a few days later.