Official Mayo diagnosis

It's good to hear you have a solid diagnosis. about the price of Imuran, when I was on it, it wasn't too bad. I want to say around $40/month for 4.5 tablets per day (very high dosage).

I'd personally wait on the biologicals, Remicade etc. unless the joint pain affects your quality of life so bad you have to try something. I waited as long as I could, when I couldn't grip things anymore I started remicade and it worked wonders but after about 16 months has been less effective but still much better than without. So I'm of course worried it will continue to become less and less effective. 3 years now and still getting relief though.

 

My son has had a similar experience to CrohnieToo. Was put on azathioprine(immuran)  entecort and pentasa. Weaned of the entecort and then told to drop the pentasa, within a couple of weeks was back on the pentasa(along with azathioprine) and this appears to be what is working for him. 

I saw Dr. Samuels and Dr. Loftus...

I admit I was surprised when he told me his feelings on Pentasa..especially after hearing all the good things that all of you have to say about asacol and pentasa...and I am concerned about what I do for the next three months as I wait for this to work. I have been on prednisone and I am finishing that up now..

but having a definite diagnosis has been a relief..I hate that its crohn's but being in limbo was terrible.. having drs second guess themselves left me in the dark.. but now.. I have crohn's.. and I have decisions to make..but I feel like I am moving forward.. does that make sense?

I'm not familiar w/Dr Samuels but I have heard lots of good things about Dr Loftus. My Mayo gastro is Dr Tremaine.

We are all so different. I know the leading gastros don't have much respect for mesalamine anymore, but let me tell you, I'm one of the fortunates it DOES work for. If I cut my dose from 16 of the 250 mg capsules of Pentasa a day to 8 a day (along w/maintaining my Imuran dose) w/in 2-3 months maximum I'm in trouble. If I get back on the full dose of Pentasa fast enough I can avoid having to add Entocort to get things under control again.

Hey june,
My GI wanted me to start imuran, I asked him if I could start on a 5ASA first. He agreed and I have recently started pentasa. Yet to see if it will work or not, I am having another scope on the 24 June. All of these long term meds are supposed to take some months to really work. However he is keen for me to graduate to imuran should things not look to be settling in the next couple of months. I'm not sure of the price of imuran where you are, but "down under" the price of pentasa is about $300 for 100 sachets. Fortunatley I can have a rebate and this brings the price down to $30 for the same amount. My GI said that the pentasa targets the small bowel and terminal ileum in particular. It does have some effect on the large colon. I am not sure why your doc says 5asa doesnt work, but I think every doc. has had there own experiences in dealing with patients and probably go with the majority rules type of thing. My doc says he wasnt a fan of imuran for years, now has changed his mind because he saw many children thrive and grow well who had CD. The only concern he has with it, is the increase in cancer chances. Although he says that badly treated CD can still be fatal, however taking something like imuran should get on top of it and that cancer can be detected early with us, especially if you keep having regular scopes. Anyway, this is jus what he said to me. I hope you find some success.
Good luck to you.
Charlee

The thing is, Pentasa wasn't quite cutting the mustard, it NEEDED the "help" of the Imuran. Conversely, it has also become apparent that the Imuran alone wasn't quite cutting the mustard w/o the help of the Pentasa. At least in my personal situation. We all vary.

The leading gastro researchers are "high" on the biologics since they see some dramatic results very quickly. More and more are leaning towards treating "from the top down therapies" rather than treating "from the bottom up therapies".

AND, keep in mind, that MOST of these leading researchers have had a hand in developing or trialing these biologics and they and their insitutions often (usually) have an interest in and benefit from the sales of these biologics. There is virtually no "independent" medical research done in the USA today and hasn't been for years, probably since in late 1940s, early 1950s.

CCFA let their website languish for years w/very little new information, etc, EXCEPT for their Ask the Specialist forum and that due mostly to the dedication of one semi-retired gastro. Who knows what sparked CCFA's renewed interest in the CCFA website? But take note of who is on the Board of Directors. MONEY is NEEDED for research. Follow the money. Where does MOST of the money for research come from?

This is NOT condemning CCFA nor our leading IBD researchers. It is just a fact of life in this country. Effective research can NOT be conducted w/o money.

Have you ever checked out the salaries and perks of your favorite charity's top officers? Their fund raising costs? What percentage of donated monies actually trickles down to the cause? I, for one, no longer donate to charities that utilize professional fund raisers which more and more charities, especially the larger ones, do. More of the donated funds go to the fund raiser than to the charity and even less to the cause.