Sounds like a good doctor and a wonderful appointment!

Singulair has been a HUGE help to me as far as fatigue goes, but I would say (if you're only going to try one drug at a time) try the ketotifen first... mast cell stabilizers are the best for overall relief.  Can you follow that up in a few weeks with Singulair?  How soon until the next appointment?

Heather

I got the call from the pharmacy about the ketotifen. My doc has ordered 2 mg capsules, and to take them 3 times a day, so 6 mg daily. The pharmacist recommended I start out with just half a capsule, and take that once a day at night  till the tiredness from it fades, in 5-7 days.

Is that what people taking it experience? I know my doctor has people on this, but he doesn't know if they have mast cell disorders, he is just looking at lowering overall inflammation. I want to make sure I don't over do it.

Thanks, Lisa! Now I know I have some options. The pharmacist was telling me to take it before meals, as it helps with the reactions to foods. He also said to start taking it at night because of how it makes you tired. So I guess it depends what you are trying to affect. I'm happy to hear how much you are taking. Sometimes my doctor prescribes the highest does, but he always expects me to go slow. We just had so many things to cover at the appointment, he didn't tell me what he planned for ketotifen.

Larken, thank you for that info! My pills are 2 mg, but they are capsules. The pharmacist (who also takes ketotifen) told me that would probably be too much for me, and to start at a lower dose at night. I can just dump some of the med into an empty capsule. He also said to stay at the lower dose till the symptoms (fatigue and increased hunger) subsided, and then I could slowly increase. Sounds like that is the way to go.

My doctor thought I might as well wait until I have the GI biopsy on the 14th, as he doesn't want any testing  thrown off by starting the ketotifen. I figure I've been sick for 18 years, I can wait a few more days. I have the pills, so as soon as I am out from the procedure, I can take them that night. I am interested to see how I respond. I have learned not to expect miracles, so any relief will be gratefully accepted.

Hi Mikev!
Here is a link to Magic Masto Lotion;  
http://www.mastopedia.com/tiki-index.php?page=magic+masto+lotion

There are 3 different recipes, all based on sodium cromolyn in any form.
Hope this helps!
hugs
Ramona

Hi Mike!

Happy to have you butt in! Your symptoms are enough like mine, I am always interested in reading what you are trying.

The ketotifen prescribed is the compounded form from Clark's pharmacy. Not sure if that is what you had. They come in capsules. I don't really know if I react to corn or cornstarch, or even sulfites, but I will watch for reactions.

I was reading the sheet they send on what to watch for, and saw a description of your burning feet as one of the known side effects of ketotifen. So watch out, if you decide to try it again. It may be more than sulfites that caused your symptoms.

I've been holding off on starting, as I have a endoscopy with biopsy on the 14th. I don't want to do anything that would jeopardize a clear result on the biopsy. Anybody know if the ketotifen or the Singular would change possible results? I'm willing to wait if it is important, but if not, want to get started trying this.

Hi Patricia!!

As to singulair, INCREDIBLE MEDICINE is that stuff!!  If I go without it, I will go into anaphylaxis after several days!

As to Ketotifen, it has two properties, that of an antihistamine and that of a MC stabilizer.  It takes approximately 6-8 weeks to fully come up to strength.  It is absorbed, I believe, only partially or it's that the body can only metabolize a certain amount.  This is why it doesn't really matter when you take it as long as you keep taking it.  We don't take it so much for it's antihistamine properties, for for the MC stabilizer properties.  And yet, the antihistamine part of it will make you sleeping - it crosses the blood-brain barrier.    So, the antihistamine action of Ketotifen lasts only 8 hours, which is why some doctors will say take it 2 times a day, but I take it all only at night since I'm sensitive to meds that make me sleepy.  I function better this way.  

I, personally prefer the 8/12 hour antihistamines, Patricia.  I take them at 6:00 am, then again at 6pm.  However, recently my dermatologist decided to break up the party a bit and I began taking my PM dose of allegra at 2pm and we added another antihistamine at 6pm to replace the allegra.

When your husband is doing a lot more reacting, the important thing is to not spend a waking hour without having some kind of an antihistamine every 6 hours, this is best.  If he takes his meds at 7AM, then by 1 or 2PM he's probably needing a boost, then to take his meds again by 7PM.  Then, if you take the meds which make  you drowsy no later than 9 or 10 pm, then they help you with your sleep and they get you through the night.   If you have a 24hr antihistamine, this would be best to put in the middle of the night - midnight perhaps.  This way when it's tapering off, you're at your lowest energy usage time period of the day and it won't end up leaving you in a bad spot were you to have a really tiring day.  It will help you get through your more demanding day hours.

I hope this helps!

Lisa