Surgery vs. Clinical trial

[Lindsey13]

Hi,
I'm new to the forum, but I would love to hear your experiences. I have had Crohn's disease since 1998. I have tried Humira, Remicade, Cimzia, and steroids. Nothing is working to get me in remission. I'm currently not on any medication but the dr has agreed to let me get another round of Remicade to get some relief. (It doesn't put me in remission but I've got to get some sort of relief because I'm going downhill fast. The dr was hesitant but finally agreed to it.). He is working to get me an appointment to see someone else because he doesn't have any experience with Methotrexate and he thinks that may be a treatment worth trying. My insurance won't cover Cimphoni so that one is out. My liver enzymes are currently elevated but ultrasound came back with great results. He's concerned about me trying Methotrexate with elevated liver enzymes but he said that will be up to the second dr to determine. I can't get into new dr until March. I asked him if methotrexate wasn't an option due to liver or didn't work where do we go from there and he said that there is no other medication out there for me to try and the next step would be clinical trials. My questions to you guys are: Do you know of any other meds that work for y'all that I haven't tried? He's completely against surgery but everything I read about surgery says that surgery is an option if you're not getting relief from meds. If you guys had surgery, when did you know it was time to have the surgery? Have any of you participated in clinical trials? If so, what were your experiences like? Did insurance cover the costs?

I'm 32 and a wife and mom of a 3 year old. I've got to get back on my feet but I'm not sure what to do. I've lost so much weight and I just feel so fatigued and I can't keep this up. Something has got to give here. Any advice you can give would be greatly appreciated.

Thanks!

 

[rollinstone]

Sorry to hear you're struggling, have you thought of anti-map therapy? Plz take the time to watch this vid.

http://youtu.be/4CELZLY2X9c

 

[DJW]

Hi and welcome,
There is also a large SSI trial going on (I know some people here are in it). I don't know much about it. There is a new drug called Entyvio that has show to be effective where other biologics have failed.

Sending you my support.

 

[Lindsey13]

Thanks. The video was very informative. Is this a therapy that you have tried and if so, did it work for you? I'll bring this therapy up to my dr next time we speak (which is pretty regularly). Thanks again!

 

[Lindsey13]

Thanks, Dave! I'll ask my dr about Entyvio too. And see what he says. I don't know anything about SSI so I'll have to do some research on that one. Thanks so much for your help!

 

[InkyStinky]

Hi Lindsey! I'm so sorry to hear about your struggles! I've been on 6MP long term (when I was a kid I was on and off pred all the time - my mom did a ton of research and got my GI to try the 6MP - it was really done a stellar job keeping my gut-symptoms under control). My current GI says 6MP is a really "old school" med, but is leaving me on it as it's working so well for me. 6MP takes awhile (3 months or so) to take effect, and there are blood tests to do before starting it so it's not a "quick" answer to inflammation.

Do you have complications like strictures, fistulas, abscesses?

My brother (also Crohn's) was on Remi for awhile. Have you previously done "loading doses" every few weeks and then been on like an 8 wk infusion schedule? Don't know a lot about Remi but I remember the timing is a big deal.

Here's a thread on the SSI trial: http://www.crohnsforum.com/showthread.php?t=60661

If I were flaring, this is the first trial I'd try to get into. It's in Vancouver, but there is a travel stipend (based on where you live) and it sounds like it's fully covering most patients' travel expenses.

Direct link to Qu Biologics SSI trial page: http://www.qucrohnstrial.com/
From their site about "Study Cost":

"Qu Biologics will be responsible for the cost of the study drugs and pay for all of the laboratory tests and examinations that are required in this study. To assist participants with travel related costs (flights, accommodation, car rentals, taxis, etc.), Qu Biologics will provide a travel allowance for those living 150 kilometres or farther from the clinical trial site or on an island. Participants will receive the allowance in three equal installments after each of their three clinic visits and the amount of the travel allowance per person will be determined based on geographical distance. Learn more about the clinical trial travel allowance. In addition, Qu Biologics has negotiated a preferential rate at a Downtown Vancouver hotel close to the clinic for clinical trial participants. Please note, it is the participant’s responsibility to arrange their own travel to and from the clinical trial site."

:ghug:

The doctor you are waiting to see - is it a GI who specializes in Crohn's/IBD?

 

[Lindsey13]

Hi Inky Stinky. Thanks for the reply! I tried 6mp a while ago and got pancreatitis, so they took me off of it. But thanks for the suggestion! I'm so glad to hear that works for you though! It was about about 15 years or so ago so it is an 'old school' drug, lol! When I was on Remicadee I did the start up disease where I got an infusion more frequently and then received treatments every 6 weeks. I didn't have to look at a calendar to know that my 6 weeks was ending because at about 5 1/2 weeks I would start the beginning stages of a flare. But during that 5 1/2 week period I felt great! My dr just agreed to do one more Remi infusion to help get my by for a few more weeks and that's on Monday. Yay!!

I've started looking at different trials today to see what I can learn since I basically know nothing about them. I found one for the antiMAP therapy but I don't think I've seen any on SSI. I'll definitely get my research started on SSI tho. Thanks for the suggestion!

The dr that I'm being referred to that I'm currently waiting to get into is a Crohn's specialist. I looked on the CCF website and he was the only one listed for my state (AR) which explains the long wait period.

Another random question... Do you guys experience joint swelling and an all over arthritic feeling while you're in a flare? I think this is Crohn's related but I've never had the joint swelling like this before and just have to ask.

Thanks again for the reply and the help!!

 

[alex_chris]

Do you guys experience joint swelling and an all over arthritic feeling while you're in a flare? I think this is Crohn's related but I've never had the joint swelling like this before and just have to ask.

Not sure what kind of joint swelling you refer to, but for years I had problems with swollen feet, it got so bad that things were swelling up to my knees. Doctors initially said it has nothing to do with Crohn's, until a new GI told me it is related to malnutrition, specifically certain deficiencies such as zinc, magnesium and protein deficiency.

Re your general question, the only thing I can say about Crohn's disease and surgery is that it doesn't mean that after surgery you can keep in remission without meds. You have surgery to remove severe strictures in your small intestine and then have to make sure scarring does not reoccur, so should take meds.

What other things do you do to tackle your Crohn's? Diet, supplements, stress relief, yoga, sport, etc.? Medications such as biologics and immunosuppressives, as you know (because you had Crohn's as long as I had) only get you to a certain point, but if you live without taking care of your Crohn's, then meds won't help much. I had a stretch of 13 years (incl. one surgery) in which I think I never was in real remission. It took me that long to understand how to live and what to do to get to remission (using azathioprine, never been on biologics) and now have been in remission about 3 years.