I just got diagnosed what should I ask my dr?

I was just diagnosed recently and theres a million things going through my mind...Any advice and suggestions on what I should ask my doctor.

That would be a great thing...whats the humira about? I was just reading something about that in another section? What does it do and is it one of the better things? Can anyone answer this for me?

I soooo agree with Marci. As I mentioned in my post in your other topic, My Daughter miserably floundered in
health for 4 years with Pentasa and Prednisone. Prednisone just covered up the symptoms in my Daughter's case and it was Holy H*ll trying to wean off the stuff and the symptoms came back full force and sometimes worse. Pentasa alone really did not give her quality of life.

I agree that starting with some sort of more aggressive treatment is the best way to go and I hope your GI will agree. You have 3 young children to take care of and you can't do that if your health is not cooperating. You need quality of life as soon as possible and minimal time trying to regain your health.

MaryS said...
I soooo agree with Marci. As I mentioned in my post in your other topic, My Daughter miserably floundered in
health for 4 years with Pentasa and Prednisone. Prednisone just covered up the symptoms in my Daughter's case and it was Holy H*ll trying to wean off the stuff and the symptoms came back full force and sometimes worse. Pentasa alone really did not give her quality of life.

I agree that starting with some sort of more aggressive treatment is the best way to go and I hope your GI will agree. You have 3 young children to take care of and you can't do that if your health is not cooperating. You need quality of life as soon as possible and minimal time trying to regain your health.

I'm sort of worried now about the prednisone...I'm guessing its addictive or just bad symptoms coming off?

I'm so sorry to hear of your diagnosis. : (

I would like to add that I, too, agree with Marci. I've been out of work since I was diagnosed October 9th, as I've gone the route of starting out with the little guns, and moving up through the drug ranks. Started with Lialda and Entocort. Very little relieft. Switched out the Lialda for Pentasa. A bit more relief. Started taking prednisone. Complete remission, but then the side effects came on very strong, making me discontinue pred. Now I'm waiting to move up to the next tier next week. So much lost time and lost wages going this route.

Since he has diagnosed you as being a severe case, I definitely think it's worth asking him for an aggressive treatment plan. My only other advice to you is to NOT be shy. Go in there, look him/her right in the eye, and tell him every gruesome detail about every symptom you have, and take an active part in deciding what course is right for you. Do your research. Learn all there is to learn about CD, and all you can about all the different medicines. Go to your office visit as well-educated about your disease and it's treatments as you can possibly be. I hate to say this, but you are going to have this diesease for the rest of your life. The more you know about it and it's treatments, the better off your quality of life is going to be, and the quicker you'll be able to improve it.

God bless.

Edit: I just noticed that CrohnsDaddy is now a forum "Regular Member". Could it be a sign of good things to come?? : )

Hi Amanda,

I just read your other post, where you mentioned your Crohn's is in your terminal ileum. In that case, Entocort might help you.

Some GIs believe it is best to start with the strongest meds first, even though they might be more toxic. Other GIs believe it is best to try the milder but less toxic meds first.  

My daughter is in full remission without side effects on only one pill of Entocort a day, which is intended for people with Crohn's only in the terminal ileum. We prefered to try the milder meds first. (btw, prednisone is indeed nasty stuff, with serious side effects - it often works, but a price is paid) 

Other people manage to do well on other milder meds, like Pentasa, Asacol or Lialda.

www.ccfa.org provides pretty good info

Other info, including diagrams, etc, can be found on the following: 

http://hopkins-gi.nts.jhu.edu/pages/latin/templates/index.cfm?pg=disease1&organ=6&disease=21&lang_id=1  

Post Edited (njmom) : 1/15/2008 10:36:51 PM (GMT-7)

Amanda,

I thought I saw a fairly in-depth posting of yours recently, where you explained your situation (living in Pennsylvania, having children that it's tough to take care of, a husband who doesn't want to move to NY where you think you have more support, etc.)

Is this you? I was about to offer some suggestions, as I seem to have recently gone into remission after a really tough few months.

If you would like to hear from me, let me know.

Craig

(Crosey)

Hi Amanda,

 I understand where others are coming from when they say you should bypass all the old treatments and go for the new biologic agents such as humira or remicade,

**however**

These treatments are last resort, when you are non-responsive to other conventional treatments such as prednisone. They are highly toxic, and have some very serious side effects (however rare getting them may be). I've had severe crohn's for nearly 6 years now and I've been on nearly all the meds, including having surgery. However, I always try to hold out until I ***really*** need the biologic agents, so I don't build up some sort of resistence to them by using them too much. Moreover, as I said, some of the side effects can be very serious, and I don't think people should suggest using these drugs as a "shortcut" to the "good drugs". But if you do try other, weaker meds and they still aren't working, then by all means, these biologic treatments can be a saviour.

Good luck with the treatments etc though! You won't know yourself once you start getting some relief from the meds! It's just a matter of finding what ones work for YOU!

I would also ask how to best reach him or her, is there someone to help with diet issues, and how soon you will be reevaluated.