New Low Impact Treatments?

[Ekaj]

Does anyone know of any new "low impact" treatments.

By "low impact" I would include drugs / treatments such as LDN, VSL3, fish oils, vitD. Generally treatments considered more benign - i.e. not linked to serious illnesses such as leukemia.

Alternatively drugs / treatments such as Humira, Remicade, other immune suppressants I would categorize as higher risk and less known drugs. No offense to anyone having success with these treatments! All the best.

(Like many of us - I've tried all of the above and then some...)


So anything fresh out there that people are trying out? Any success stories???

 

[Starla86]

Do you know the name of what you are fixing to start taking that is "Remicade like" ??

 

[Dexky]

Hi Ekaj, sorry I can't help you with your question but I noticed you've been dxed with PSC since 02. My son got dxed with that last March 2010. Just wondering how that has progressed over the years? Good luck with your search!! If PSC is not something you want to discuss on the forum, please feel free to PM me. I just like to hear from those who've had it for so long. There was a lady on here at one time who was dxed with it in '92, and though she did have stints at one time to open the bile ducts, she was not troubled with it for nearly 20 years!!

 

[Ekaj]

@Starla86

I chickened out on the "remicade like pill" it was a trial and had some number / letter combination name - but at the end of the day it was just another immunosuppressant - I'm hoping that I might find something else. I'll see my gastro in about a month and I'll get the name again.


@Dexky

PSC has primarily meant lots of blood tests and sensitivity to drugs that would ordinarily never interact with the liver - like LDN and tylenol. There is a drug called ursofalk (in Canada) that is used to treat it - but be aware that everyone that has started an ursofalk regime will eventually require a liver transplant. It may be the case regardless and you may have more health now... etc. So make a decision about the drug based on discussions with your doctor and the current severity of the disease.

The severity in my case has been substantial to negligible primarily depending on how my liver interacted with the treatments / drugs I was taking for the crohn's. My liver enzymes have been out of whack for a while... recently less so and I'm hopeful.

Its important to keep up with the blood tests, I try to. To make sure that drugs are not interfering and that the disease is not rapidly progressing.

 

[Dexky]

My son is on Ursodiol (don't know if it's the same as Ursofalk). We have been led to believe, both by doctors and all the literature, that all PSC patients eventually require transplant. Most literature will say on average within 7-10 years.

Do you have enlarged spleen or any other psc symptoms?

 

[Ekaj]

@Dexky

I don't know if I have an enlarged spleen. As far as symptoms - itchiness, and I think I'm a bit yellow on the worst days...

 

[Dexky]

Hey Ekaj, I feel like I'm hijacking your thread but we were told early on that uncontrollable itchiness would be one of the symptoms down the road. Sounds like you and your docs have it well in hand though!