Any newer oral medications out for CD?

[GutlessWonder86]

Hello CD Forum,

How are we doing today? I'm a Crohnie since the age of 12. Tried Remicade and it only lasted 2 yrs. for me. Humira never worked, 6MP worked for a few yrs. until it lowered my white count down to 1.

Anyway, I'm on Entocort and it's been working but now I'm getting some soreness around the stoma site which will be checked by my GI in a few weeks. I'm praying it's adhesions this time and not the Crohn's side effects--strictures and or inflamed small bowel.

Does anybody know of anything new on the market to treat Crohn's besides steroids, Entocort, immunosuppressants, and biologics. I'm hoping that there are newer oral medications instead of anything that requires a shot because I need my thighs for Sumavil shots for migraines, my abdomen & backside for Arixtra shots, and my arms for B12 shots.

Any insight would be appreciated. Thanks again and enjoy this beautiful weather!!

 

[nogutsnoglory]

There are some novel agents that aren't immunosuppressive or biologic but you would only be able to access them through a clinical trial.

Two that come to mind are whipworm and stem cell therapy. The benefit is they are new and likely aren't as harsh on the body. The bad news is we really don't fully know the impact yet.

I can include the link to FDA trials but not sure you are in the US? Clinicaltrials.gov

 

[GutlessWonder86]

I live in NY state.

 

[nogutsnoglory]

I know they are definitely doing whipworm trials in NY. search the site I listed to see if any of those trials might be of interest.

 

[naturevalley]

They recently put me on Uceris, it is a steriod but one with few to no side effects in my experience. This drug came out in March 2013. I am sure some people see side effects on it but I have not, and it has helped alot. It is typically used for uclerative colitis but I have crohns and it is helping.

 

[nogutsnoglory]

The reason you probably aren't experiencing side effects is because Uceris is not released throughout the entire body. 90% of it is absorbed in the gut thereby eliminating side effects you would see with a drug like prednisone.

"UCERIS is a different kind of steroid for active, mild to moderate ulcerative colitis (UC). It decreases inflammation throughout the colon with a targeted delivery of medicine throughout the full length of the colon, where the disease is located.

Because of the way UCERIS is absorbed and processed in the body, most of it does not enter the bloodstream, and therefore it has a safety profile similar to placebo (sugar pill)"

http://www.uceris.com/patient/uceris-faq.asp

 

[naturevalley]

I thought thats what my doctor tried to explain also. Its fascinating how certain medications work and I am glad they are still working and coming up with new ones. Uceris has helped but since I have crohns I am still experiencing the "extra" stuff that goes along with this humbling disease. I am on Remicade and am getting ready to start imuran also. :{

 

[GutlessWonder86]

i'm not on Uceris. I'm on Entocort

 

[nogutsnoglory]

It's the same drug gut it's just that Uceris is for UC and releases in the colon whereas Entocort is for Crohn's and releases in the small intestine.

 

[Kev]

Have you looked into LDN as an altenative? It is a legitimate drug, just a new approach, and has a fairly high success rate. I think if one looks at the small amount of the drug that one has to take to achieve success, and the resulting low risk of side effects, it has a lot to offer. The big obstacle is finding someone to prescribe it.. but it can be done.

 

[GutlessWonder86]

never heard of it. if it was being used where I live, I know my GI would've told me about it.

 

[nogutsnoglory]

You are in NY, it's available. But if you got a prescription there are good LDN compounding pharmacies that could ship it to you.

 

[GutlessWonder86]

oh, it has to be compounded? didn't know that. is it expensive?

 

[Kev]

OK.. LDN has been 'around' for treating IBD since early 2007.. First report showed up at about this time of year back then. I started on it November, 2007.. and my IBD has literally been history ever since. It does have to be compounded, it isn't covered by insurance (it hasn't been FDA approved yet), but here, in Canada.. I pay less than a dollar a pill ( 90 pills cost $80.25 CDN )... There have been 2 studies using it to treat IBD in adults, and 1 for pediatric IBD. I've used it for over 5 years, the only side effect I ever had was wonderful dreams.. which, sadly, do not last. That is my kind of side effect. This Forum is to thank for my finding LDN, and continues to offer hosts of info about it. Find a doctor to prescribe it, a good pharmacy to compound it, then make sure your supply is fresh... and 9 chances out of 10, your IBD could be history too.