Ketotifen - LONG BUT WORTH THE READ!

[Mike Kavo]

This drug seems to help me a great deal at 2mg morning/night. Spoke to Mark he has cleared me to pass this info on with caveats.

However my disease is NOT refractory and has not been so for years now. I do flare up occasionally but Wise-Anderson Protocol always nails it.

I recently had another health issue this drug was prescribed for (a CONFIRMED & ACCEPTED 100% you can see it under a microscope mast cell disease). Yes I know CPPS has shown some good research linking it to mast cell disease in "some" people. IC certainly has mast cell links but they use Elavil which I tried and is of no use for my mast cell disease. However Ketotifen is amazing it REALLY helps me with my mast cell disease! I noted a side effect was it also really stabilised my CPPS. I was shocked how all my health problems improved on one drug! And this is just the tip of the ice berg for mast cell stabilisation protocols. How many of us have ever really tried mast cell stabilisation under an immune system health care team? Not many. Bet I am one of the few to have immune system docs look at my CPPS by default of another disease. I am not saying I feel this is a cure I feel it is a stabiliser to reduce flare.

Note before taking this drug SPEAK to your medical team! Do not pop this pill alone (you can as it is easy to get as it is an old SAFE anti-histamine being re-used like many 20th century drugs for other diseases). However you are warned it has been suggested by some people to have issues within the Lower Urinary Tract - so you MUST be under observation if you have CPPS (especially if you have voiding issues or are old with BPH etc). This is licensed usually for Asthma/Hay Fever/Allergies (which I also have) so it is not usually a big deal in those patients as they don't have CPPS usually. I have some mild numbness of the bladder neck from it but so mild I would not notice it usually. If it causes flares in some this will be why. So yes it is not risk free. I would put those with a history of allergies & asthma (even just child hood) or other inflammatory issues to the top of the pile to try this. Basically people who have allergies and CPPS just like me. Remember not all CPPS is equal most people agree with this!

Ketotifen also makes you very tired and needs worked up on to avoid this. At 1-2mg it does very little at 4mg it kicks in for me (if you are a fatty it will take more so you will need a really good doc to hold your hand if you are over weight). Mast cell disease is renowned for requiring higher doses and being more refractory in fat people. Again research if interested.

This is NOT just an anti-histamine it is an accepted mast cell stabiliser with very good results in trials of many mast cell disease (there is a lot of these and classification is a mess as this is an emerging concept you will need to research these). You will find veterans have discussed CPPS and mast cells many times over. In fact Mark posts some amazing info on mast cells if you search the site!

Why Wise-Anderson Protocol concepts work for my pelvic pain along with a mast cell stabiliser I have no idea, but it is not out with the realms of possibility as mast cells do react to touch and stress (confirmed!). Wise-Anderson Protocol touches and reduces stress, in fact that is how basically Wise-Anderson Protocol works. Again though not all CPPS will be the same. This is more complex than a single post of course.

If your doc is closed minded find another who will at least consider the mast cell concept if you wish to try this. An immune system doc is I feel the way to go - GP's, Neuros & Uros are bloody useless and not trained for the immune system - so they will pooh-pooh this out of hand.

WARNING! I AM NOT A DOCTOR I AM ONLY DROPPING OFF SOMETHING HERE. MY DISEASE IS NOT REFRACTORY SO I AM NOT THE BEST PERSON HERE TO GO BY EVEN. IF YOU ARE REFRACTORY AND HAVE THE WILLINGNESS I WOULD LOVE TO HEAR IF THIS WORKS OR NOT FOR YOU. PLEASE UNDERSTAND YOU MUST USE IT FOR A MONTH OR MORE BEFORE GIVING UP AS IT TAKES WEEKS TO ITERATE UP ON AND TO GET INTO YOUR SYSTEM IN SUFFICIENT QUANTITY AS MANY IMMUNE SYSTEM DRUGS REQUIRE. I WOULD SET ASIDE 8 WEEKS TO TRY IT AS I WAS ADVISED BY MY IMMUNE DOC. THIS DRUG IS GENERALLY SAFE WITH LOW SIDE EFFECTS EVEN AT 4MG A DAY (2MG TWICE DAILY). THE RISK IS LOW EVEN IF IT FAILS. THE DOSE AND TIREDNESS IS THE TRICKY BIT AND WHAT AN IMMUNE SYSTEM DOC IS NEEDED FOR.

If it works you won't notice a click CPPS is gone, symptoms will just drop off and reduce. It stabilises it does not remove CPPS in me! Try to keep a note during the trial how each day feels it may help after a couple of months to see if it does stabilise your CPPS or not.

I dearly hope this helps someone!

[webslave]

Mike, thanks for this update. It gives members yet another avenue to explore!