Welcome, Guest. Please Login
MCD - Mast Cell Disorders
  Welcome to our forum.
  HomeHelpSearchLogin  
 
Pages: 1 2 
Send Topic Print
Ketotifen and where to get it (Read 41119 times)
mikev
Guiding Light
***
Offline


I Love YaBB 2!
Posts: 188
st louis, mo
Re: Ketotifen and where to get it
Reply #15 - 04/12/11 at 06:13:29
 
Lisa:
Well my ketotifen expirement has ended for now. I know all us have strange & very different masto's but mine is always challanging. I started slowly but upped it very quickly to the 1mg and was going to up to 2mg in the future. I noticed when I first started taking almost instantly my upper body skin discomfort seemed to lessen but my feet sort of tingled more. I just thought it was me being sensitive or something and that the upper body was the real thing. My feet kept slowly getting worst, but the upper body was doing fine so I continued taking it. The weekend before last my feet went crazy. They turned beet red like they used to do before I was diagnosed & I could hardly walk the pain was so bad. The next day my hands did the same thing beet red  and my arms started hurting, so I looked hard to see if it could be anything else that was going on with me and made for me a very, very difficult decision. To stop. It has now been about 10 days &  my hands are back to normal & feet haven't completely returned to where they were but almost. This decision to stop was very, very difficult. from what I read for people with more systemic issues than gastro issues, like me, ketotifen should have been the better medicine. I was not taking the generic, either,  but the actual Zaditan from England. To say it's  depressing is to put it mildly. My wife who does support me once again had the comeback of don't you ever get tired of looking for that magic medicine that will make you better & I know my doctor who I practically had to beg to give me the prescription will although he may not say it will feel the same as my wife. So right now my body is slowly going back to where it was which is the good thing, but I'm in utter disbelief of what happened. I had read of people not being able to take it as it made them too tired or they gained lots of weight but to trigger a major mast cell attack is unbelievable. I hope this note doesn't keep other people from trying it as I know it works for a lot of people. I hope to when things get settled down completely try again just to prove it. Do you or anyone else have any idea of what could have happened?
Thanks
Mike V
Back to top
 
 
IP Logged
 
Josie
Ex Member





Re: Ketotifen and where to get it
Reply #16 - 04/12/11 at 08:17:04
 
Hi Mike ,

I am sorry the ketiofen didn't work . I wanted to tell you something I experience as I wander if it was the corn flour in the medications .

When I have any sulphites inc maize starch , my feet tingle , then hurt , then burn, to the same extent you are describing . I can tolerate a certain level of maize starch , but over a set level the symptoms from it are more than the drug can mop up .

Corn flour and gelatine are treated with sulphites . Corn is softened with it and the flour bleached .
Gelatine , the animal hide i soaked in sulphites to soften it to enable removal of the gelatine .

I can tell I have had sulphite before the exact culprit is identified . Since removing it completely from my diet and meds , my feet have stopped burning and have normal sensation . I am now getting the benifit of my drugs without having to mop up the effects of other ingredients .

I wanted to let you know this , in case it is relevant to you .

I hope you are well aside of this Wink
Josie
Back to top
 
 
IP Logged
 
mikev
Guiding Light
***
Offline


I Love YaBB 2!
Posts: 188
st louis, mo
Re: Ketotifen and where to get it
Reply #17 - 04/12/11 at 14:48:10
 
Josie:
Thanks for your response. It does make sense. I know that I have a serious problem with sulphates, as I believe that my masto was a result of taking glucosamine, chrondrotin & MSM for a period of over 5 years. Looking back at those 5 years. I now can see a gradual skin sensitivty problem until the first major episode which started with the burning feet. At first I & my docs thought it was neuropathy, until it went full systemic and that's when my search finally lead me to a doc who diagnosed me with masto. Thus I'm going to do more research into the area that you pointed me to. You don't know how much I appreciate your caring about my condition.
MikeV
Back to top
 
 
IP Logged
 
Josie
Ex Member





Re: Ketotifen and where to get it
Reply #18 - 04/13/11 at 00:25:37
 
Hi Mike ,

Helping each other is vital for us . I have an exhaustive sulphite list . It took me 18months to discover some . caramel colouring puts me in ED quick . If you could pm your email addy i will send you it Wink

Maybe , with this in mind , liquid ketiofen may be worth a trial Wink

I haven't looked back since I sorted out my medications Wink I thought i had very progressed diabetic neuropathy . My feet itch when my sugar is over 20 ( english measurements - high )

Jose
Back to top
 
 
IP Logged
 
Sandi
Guiding Light
***
Offline


I Love YaBB 2!
Posts: 205

Re: Ketotifen and where to get it
Reply #19 - 04/13/11 at 10:05:25
 
Mike, so sorry to hear about the ketotifen reaction! Arggghhhh so frustrating isn't it! I just got the zaditor eyedrops you told us about. I was thinking that doesn't bother you however it's a tiny amount, again as Josie stated it very well could be an inert ingredient! again so sorry and I understand the medication frustration! Grrrrrrr!
Back to top
 
 
IP Logged
 
Lisa
FORUM MODERATOR/ADVISOR
*******
Offline


I am not a doctor.
Posts: 1499
Volta Redonda, RJ Brazil
Re: Ketotifen and where to get it
Reply #20 - 04/13/11 at 15:45:09
 
Oh, Mike, that is very disappointing!!  Cry   I'm really sorry to hear about it!!   But perhaps it is only Ketotifen which is the problem. I've heard that there is another - ruputadine?  Out of Spain which seems to be even better than Ketotifen that may be worth trying.  


Mike, I'm glad you stopped it when you did!!  I shiver to think of what could have happened!!!  This is the thing about masto that drives everybody nuts - we all react so diferently!!  And I know that you have every rigth to want that magic pill!  What's wrong with your wife in that she doesn't want it for you too?!!  She's not sick, that's what!!  Tell her that she's not helping!!   But don't get upset with her, and be thankful that she doesn't understand for then your burden would be that much heavier!!!

Mike, keep trying other meds!  I've been so impressed as to how much Singulair has helped me regain some stability as well as the feeling of normalcy again!!  It's been really GOOD!  But MC stabilizers are VERY important be whatever form you can take it in.  So, try the Quercitin, Mike and see if this helps for it's also a known MC  stabilizer!!  

Don't give up my friend!!  There may not be a "magic pill" but what's the harm in trying to find it?!  Who knows, perhaps you will!!

Keep fighting Mike!!  You're STRONG and an intelligent fighter, don't give up hope for IMPROVEMENT!!!

Hugs, my friend!!
Kiss

Lisa

Back to top
 

Donīt forget, there is so much more to life than being sick!
 
IP Logged
 
mikev
Guiding Light
***
Offline


I Love YaBB 2!
Posts: 188
st louis, mo
Re: Ketotifen and where to get it
Reply #21 - 04/14/11 at 14:30:07
 
Everbody:
Thanks all of you for the concern. I think Josie maybe on the right track with the ingrediants mixed with ketitofen. I know I have issues with sulphates & I never noticed that corn starch which as Josie says has a high sulphite concentration. Anyway I have never shocked, I guess there could be a first time but the extreme flushing of my feet always means something bad is going on. And Lisa I really don't blame my wife. I would be tired of living with me too. And your advice on singular I'm taking. In looking at the ingrediants in Zyflo and singular it makes no sense to keep the zyflo. On top of it in St Louis the allergy rating is off the chart so not a good time of year for me anyway. Thanks to all my masto friends for their support and again I think Josie is right about the liquid ketotifen, when thinks quiet down I'm going to try to get a script for it, too  many people have good luck with ketotifen and with me being systemic it should work better than gastrocrom.
Thanks
Mike V
Back to top
 
 
IP Logged
 
Lisa
FORUM MODERATOR/ADVISOR
*******
Offline


I am not a doctor.
Posts: 1499
Volta Redonda, RJ Brazil
Re: Ketotifen and where to get it
Reply #22 - 04/15/11 at 12:13:13
 
I've taken the liquid Ketotifen too Mike.  I think it's worth a try!  Yet perhaps there's that lab the others are talking about up in Washington State that might be worth considering in that if they could manage to package it without any fillers.  If they could put it straight into capsuls and then you add that to water!!  

It think it's worth just one more attempt before hanging it up.  Yet, I think you need to look into the rupatadine or Rupafin as it is also known.  This is not just an MC stabilizer but it is also a PAF blocker as well!!   It may not be any more difficult for you to get this medication than Ketotifen!!  And it may provide for you the added benefit of being the PAF blocker - it may end up helping with your pain, Mike!!

It's worth looking into anyway!

Lisa
Back to top
 

Donīt forget, there is so much more to life than being sick!
 
IP Logged
 
mikev
Guiding Light
***
Offline


I Love YaBB 2!
Posts: 188
st louis, mo
Re: Ketotifen and where to get it
Reply #23 - 04/17/11 at 13:09:44
 
Lisa:
Thanks for your thoughts. I'll do some research into both especially the Rupafin. Right now just trying to get back to where I was, such is all of our lives with masto, but without trial, even though error often occurs, sometimes success does happen & the errors although tremendously deflating help us in my opinion better explore our own version of masto  I've started singular & elimanated zyflo, with all it's fillers, so for now no issues there. And with Josie's help trying to eliminate as many hidden sulfites as possible. Right now my skin is fairly well back to normal, but the feet are the issue. Have elimnated using any products with alcohol or menthol in them to cool my feet but still a lot of flushing, which for me is more pain. Also eliminated any cold water to try to cool them down. Had noticed in the past when tried this they would get purple & that's what's  happening now so no cold water on them. And to Heather my thoughts are with you, how sad doing something so wonderful as giving your daughter a great birthday party turns into an episode for you. Hope you get back ok soon. And to Sandi, did the eye drops help you? If not although it is a script & not cheap Pataday really helps my eyes a lot.
Mike V
Back to top
 
 
IP Logged
 
sandyb
Rookie
*
Offline


I Love YaBB 2!
Posts: 13

Re: Ketotifen and where to get it
Reply #24 - 05/19/11 at 14:38:36
 
Mike- just wanted to say that I am thinking about you and I am sorry that it didnt work out with the ketotifen. It stinks that you had to go through this. I have just gotten a skin cream -sodium cromoglycate that Dr. Castells suggested. It comes from a pharmacy called Masters in the UK. It is suppossed to help with the skin symptoms but will not get rid of the lesions- darn. I will let you know if it works. It was 115.50 including shipping. I may still try to ketitofen but havent yet.
Just had shoulder surgery and want to get myself somewhat stable before I introduce anything.
Take care
Sandy
Back to top
 
 
IP Logged
 
Pages: 1 2 
Send Topic Print