I have Mastocytic Enterocolitis (confirmed several years ago in colonoscopy via staining test). Despite strict diet and daily H1 and H2 blockers I still have massive D daily. Tried Gastrocrom and that made it worse. My doc recommends trying Ketotifen now. Ketotifen is not FDA approved. So I know most people end up buying it from Canada or UK or India. I have read where people have had success getting this compounded here in the U.S. Is anyone familiar with a compounding pharmacy that they have used that does this and will mail nationwide? If so what was your cost for such?
Thanks,
Marcie
Ketotifen Compounding Pharmacy
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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marciejones10
- Posts: 9
- Joined: Thu Sep 06, 2012 12:21 pm
- Location: MISSISSIPPI
Hi Marcie,
I apologize for not being able to offer any suggestions regarding a suitable compounding pharmacy for ketotifen, but I have no experience with that item. Hopefully someone else here who does have some experience may see your post and share some of their insight.
In difficult cases such as yours however, I have a hunch that methylation issues may play a significant role for some of us. Have you investigated the possibility that you might have methylation problems due to genetic mutations associated with the production of methylenetetrahydrofolate reductase (MTHFR) enzyme? MTHFR gene mutations are very common, and some of them appear to have significant affects on our ability to metabolize certain vitamins and minerals, resulting in compromised performance of certain chemical and hormonal processes in the body. This appears to have the potential to derail our recovery from MC in some cases.
Please bear in mind that this is mostly speculation at this point, because no medical research has been done to investigate this issue, let alone confirm it or rule it out. IOW, until some dedicated research is done, this is just a theory about possible effects of methylation issues on MC cases that are refractive to other treatment methods.
This thread highlights the issues:
Why I Believe Methylation Issues Are Associated With MC
And you might be able to find some useful information in some of the other discussions about Methylation Issues.
I hope that some of this may be helpful.
Tex
I apologize for not being able to offer any suggestions regarding a suitable compounding pharmacy for ketotifen, but I have no experience with that item. Hopefully someone else here who does have some experience may see your post and share some of their insight.
In difficult cases such as yours however, I have a hunch that methylation issues may play a significant role for some of us. Have you investigated the possibility that you might have methylation problems due to genetic mutations associated with the production of methylenetetrahydrofolate reductase (MTHFR) enzyme? MTHFR gene mutations are very common, and some of them appear to have significant affects on our ability to metabolize certain vitamins and minerals, resulting in compromised performance of certain chemical and hormonal processes in the body. This appears to have the potential to derail our recovery from MC in some cases.
Please bear in mind that this is mostly speculation at this point, because no medical research has been done to investigate this issue, let alone confirm it or rule it out. IOW, until some dedicated research is done, this is just a theory about possible effects of methylation issues on MC cases that are refractive to other treatment methods.
This thread highlights the issues:
Why I Believe Methylation Issues Are Associated With MC
And you might be able to find some useful information in some of the other discussions about Methylation Issues.
I hope that some of this may be helpful.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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marciejones10
- Posts: 9
- Joined: Thu Sep 06, 2012 12:21 pm
- Location: MISSISSIPPI
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Marcie,
Agree with Tex, I would recommend doing some reading/research about methylation issues and mast cells.
There are loads of articles on the net about this topic.
There are affordable and readily accessible supplements that fix methylation cycle, and go a long way to fixing mast cell issues
We have a seperate section with various article etc. if you have any questions don't hesitate to contact me direct by email.
Agree with Tex, I would recommend doing some reading/research about methylation issues and mast cells.
There are loads of articles on the net about this topic.
There are affordable and readily accessible supplements that fix methylation cycle, and go a long way to fixing mast cell issues
We have a seperate section with various article etc. if you have any questions don't hesitate to contact me direct by email.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi Marcie,
I'm a "long lost veteran" of this board and I just happened to check in and saw your post re: compounding of Ketotifen. I think I might be able to help. I too was diagnosed with ME about 6 years ago, when not much was understood about the role of mast cells in GI disease. Tex and some other veterans of this board helped me get through that time, which was not an easy journey. I am forever in their gratitude.
Fast forward to today and I've been diagnosed with a Systemic Mast Cell Disorder that goes far beyond my gut. I've learned a great deal about meds since my original diagnosis as I've tried many combinations to try and get symptom relief. The first thing I would mention to you is that some patients with a mast cell disorder will require much higher doses of anti-histamines, than is generally accepted by the medical community. The amount of anti-histamines I take is prescribed by physicians who have understanding/expertise in mast cell disease. When I finally got on a more appropriate dosage for someone with a mast cell disorder, I found that my D and C both got better. (Along with MAJOR dietary changes.) I haven't eliminated gut issues altogether by a long shot, but they are much improved and I think getting on the right amount/combo of anti-histamines for a mast cell patient was key.
As you probably know, ketotifen is both an anti-histamine and a mast cell stabilizer. I have had contact with other mast cell patients who have done well on it, to the point that it was life changing and others who did not tolerate the medication well at all. Having said that perhaps you would be one of the lucky ones who would do really well on Ketotifen. Fingers crossed for you!
Here is the info you asked about for a compounding pharmacy for Ketotifen. Full disclosure, I didn't receive Ketotifen from this pharmacy but other mast cell patients have used it and rave about the great service. I'm sure a quick call to them would answer most of your questions about their ranges of services, price, shipping, etc.
Clark's Pharmacy
15615 Bel Red Rd
Bellevue, WA 98008
(425) 881-0222
Hope it works out for you!
Best,
Julie
I'm a "long lost veteran" of this board and I just happened to check in and saw your post re: compounding of Ketotifen. I think I might be able to help. I too was diagnosed with ME about 6 years ago, when not much was understood about the role of mast cells in GI disease. Tex and some other veterans of this board helped me get through that time, which was not an easy journey. I am forever in their gratitude.
Fast forward to today and I've been diagnosed with a Systemic Mast Cell Disorder that goes far beyond my gut. I've learned a great deal about meds since my original diagnosis as I've tried many combinations to try and get symptom relief. The first thing I would mention to you is that some patients with a mast cell disorder will require much higher doses of anti-histamines, than is generally accepted by the medical community. The amount of anti-histamines I take is prescribed by physicians who have understanding/expertise in mast cell disease. When I finally got on a more appropriate dosage for someone with a mast cell disorder, I found that my D and C both got better. (Along with MAJOR dietary changes.) I haven't eliminated gut issues altogether by a long shot, but they are much improved and I think getting on the right amount/combo of anti-histamines for a mast cell patient was key.
As you probably know, ketotifen is both an anti-histamine and a mast cell stabilizer. I have had contact with other mast cell patients who have done well on it, to the point that it was life changing and others who did not tolerate the medication well at all. Having said that perhaps you would be one of the lucky ones who would do really well on Ketotifen. Fingers crossed for you!
Here is the info you asked about for a compounding pharmacy for Ketotifen. Full disclosure, I didn't receive Ketotifen from this pharmacy but other mast cell patients have used it and rave about the great service. I'm sure a quick call to them would answer most of your questions about their ranges of services, price, shipping, etc.
Clark's Pharmacy
15615 Bel Red Rd
Bellevue, WA 98008
(425) 881-0222
Hope it works out for you!
Best,
Julie
Hi Julie,
Thank you for checking in and posting that information. There is such a wide range of issues associated with the MC family of syndromes, and some of the conditions that can be associated with this disease are so complex that none of us are able to understand all of them, so it's extremely gratifying whenever someone who does have that knowledge is able to share that information with us.
And it's nice to see an update from you. I hope that you continue to improve as you and your doctors continue to learn more about mast cell issues.
Thank you for sharing,
Tex
Thank you for checking in and posting that information. There is such a wide range of issues associated with the MC family of syndromes, and some of the conditions that can be associated with this disease are so complex that none of us are able to understand all of them, so it's extremely gratifying whenever someone who does have that knowledge is able to share that information with us.
And it's nice to see an update from you. I hope that you continue to improve as you and your doctors continue to learn more about mast cell issues.
Thank you for sharing,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.