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Mast cell stabilisers are used in patients with systemic mast cell diseases and for eye .nose and ear allergies . This page gives details of ordering help for these medictions and sources of financial help in paying for them .
In the UK these meds are availble on the NHS . Gastrocrom is nalcrom in the UK
Ketitofen is availbe in the UK and Canada and Italy
Quercitin is a supplement which is known to stabilise mast cells .It is a food not a drug . Please apply all the rules
Some medications are only available on prescription .I have highlighted these in black .Others are availble over the counter .
Commencing any new drug or supplement should be done with caution ,observing a few basic safety rules .
1) Discuss it with a pharmacist who will check for any bad mixes-interactions with other drugs you are taking
2) Only start one new thing at a time . This includes foods , products
3) Commence in the day as 2am is high histamine time so you may get symptoms which aren't the drug but you think they are .
4) If your very sensitive to new things begin with very low doses and build up gardually
5) Check all ingredients inc the inert ingredients for known triggers in you and paotentially connected triggers -like gelatine and sulphites .
6) If a med causes symptoms - wether known side effects or not -put it on your naughty list and don't be tempted to try again .
H1 antihstamines -the drowsy ones cause drowsiness in some mast cell patients .In those it effects - it typically wears off after 2 weeks . So be patient if this side effect occurs . Drowsy = sleepy but rousable .
If the person is unrousable, put them in the recovery position and call 911/ 999 for assitance . This isnt drowsy -its unconcious .
Ketitofen is availble on the NHS in the UK
There have been supply issues in the UK which I understand are now resolved . Please contact me if you have any issues .
In the United States, is hasn't been fda'd . This is due to it being a drug for an orphan disease and wouldnt make the drug company enough money ..
This is an excerpt, read the entire article at;
Orphan Drug Act
CONGRESSIONAL FINDINGS FOR THE ORPHAN DRUG ACT
The Congress finds that---
(1) there are many diseases and conditions, such as Huntington's disease, myoclonus, ALS (Lou Gehrig's disease), Tourette syndrome, and muscular dystrophy which affect such small numbers of individuals residing in the United States that the diseases and conditions are considered rare in the United States;
(2) adequate drugs for many of such diseases and conditions have not been developed;
(3) drugs for these diseases and conditions are commonly referred to as "orphan drugs";
(4) because so few individuals are affected by any one rare disease or condition, a pharmaceutical company which develops an orphan drug may reasonably expect the drug to generate relatively small sales in comparison to the cost of developing the drug and consequently to incur a financial loss;
(5) there is reason to believe that some promising orphan drugs will not be developed unless changes are made in the applicable Federal laws to reduce the costs of developing such drugs and to provide financial incentives to develop such drugs; and
(6) it is in the public interest to provide such changes and incentives for the development of orphan drugs.
In recent months arrangements have been made to improve ease of ordering and importing . This is the current situation .Please read the announcement below about the drug Zaditen® (Ketotifen).
With much anticipation we are happy to announce that with the diligence of Kelli Foster our FDA/NORD representative patients with mast cell disorders can now order Ketotifen directly from the manufacturer, please read highlights below and ways to order!!!
For the last nine+ months, I have been tirelessly working to identify a safe, reliable and consistent source of Zaditen® (Ketotifen) for my daughter and myself. We have found that Zaditen® helps manage our Mastocytosis and Mast Cell Activation Disorder (MCAD) symptoms. Zaditen® is not available in the US. The only alternative we found was to have it compounded at a pharmacy. Due to personal preferences and concerns, I continued my investigation into procuring the brand name Zaditen® medication and expanded my search internationally. After a number of phone calls and emails between Novartis, Food and Drug Administration (FDA), and various international pharmaceutical companies, I was finally able to trace who "owned" Zaditen® (Ketotifen).
Novartis transferred the license for Zaditen® (Ketotifen) Tablets 1mg and Elixir 1 mg/5 ml to Defiante Farmacêutica, S.A. (Defiante) in 2010.
Since 2010 Defiante Farmacêutica, S.A. holds the authorization to commercialize Zaditen® (Ketotifen) Tablets 1mg and Elixir 1 mg/5 ml in the United Kingdom (UK).
For commercial and logistic issues, Defiante Farmacêutica, S.A. signed a distribution agreement with Swedish Orphan Biovitrum Ltd. (SOBI).
In general, the distribution agreement states that Defiante supplies SOBI with Zaditen® and SOBI handles medication storage, supply, marketing and distribution activities within the UK.
Zaditen® (Ketotifen) 1mg tablets are manufactured with exactly the same quality, safety and efficacy profile as the Novartis supplied product. Defiante maintained the same composition, manufacturing method and specifications as Novartis.
The FDA has been very supportive and has guided me through the procedures that should be followed regarding the Personal Use Importation Policy of unavailable medications for patients under the care of a physician. Please keep in mind that the FDA does not promote the use of these products for off-label use but do understand that there are circumstances when a physician may believe under the practice of medicine that the products could be of benefit in certain patients. Nor does the FDA promote the use of a medication unapproved in the U.S. as this would be.
After many conversations with the FDA and because of the newly formed relationships between Defiante, SOBI and Masters Pharmaceuticals Ltd (a global specialty healthcare company with a heritage of over 25 years working with Manufacturers, Hospitals, Pharmacists, Governments and individual patients with the singular objective of 'Improving lives through patient access') brand name Zaditen® (Ketotifen) is available for Mastocytosis and Mast Cell Activation Disorder patients with a valid prescription through Personal Use Importation.
HOW TO ORDER
Secure a signed prescription for brand name Zaditen® (Ketotifen) from your physician.
Contact Julie at Masters Pharmaceuticals Ltd (1-800-969-1152) for product and shipping costs.
Fax the signed prescription for Zaditen® 1mg tablets to Masters Pharmaceuticals Ltd (1-800-969-1153 - Attention: Julie).
Provide appropriate payment (i.e. credit card, etc…) for prescription order.
WHAT TO EXPECT
Once Masters Pharmaceuticals Ltd has received your prescription and payment, they will prepare your prescription for International shipping.
NOTE: All international medication shipments are subject to the FDA Personal Use Importation Policy (see attachment) and US Customs Inspections. You should receive your three (3) month supply of brand name Zaditen® within approximately 10 business days.
The brand name Zaditen® (medication manufactured by Defiante Farmacêutica, S.A. distributed by Swedish Orphan Biovitrum Ltd. (SOBI))
As always, please keep checking in on the website for updates. We will continue to keep you as up-to-date as possible. A special thank you to all who have signed up for TMS Announcements. Please keep the feedback coming in! We use it to help provide you with the best web experience possible!
There is a pharmacy which will compound it for you with safe ingredients . Clark's Pharmacy in Washington state. Here it is again. 1-800/480-3432 An alternate number is 1-425/881-0222
Some pts have found this preperation less effective .
UK Info - If you are currently paying prescription charges and are on esa or jsa , then follow the link , fill in the form and send it back .Its scheme for those on low incomes . Its not well publicised .
If your working , buying a 3 month, 6 month or year prescription card will seriously reduce the costs os regular medications