Your opinion on my case

[scaredypants]

your opinion on my case

' Hey everyone. I'm scared to tears. I've had crohns since I was 9. For 21 years I've been self medicating with prednisone. I feel health. No pain. My last colonoscopy showed severe inflammation yet I feel fine. Now my doc wants to put me on remicade. Does that make sense to you guys? Were u all sick prior to remicade? We haven't even tried anything else like pentasa or sulfssulzane. Your thought please! Oh and when I take prednisone its 25 mg got 4 days then wean off 5 mg ever 5 days. Thanks all
oh never had surgery. Flare maybe twice a year sometimes less frequently

 

[Artificial]

Hi,

Although you might feel fine, it might just be that the prednisone was/is masking the more severe symptoms.

I tried other drugs first (pentesa, pred, azathiprine) and will be starting remicade/infliximab soon (quite sick at the moment) but I know from reading other peoples posts that some doctors seem to do decide to hit the disease hard and fast with the most powefull meds first.

Let us know how it goes and welcome x

 

[scaredypants]

Thanks for the reply. At the moment I'm not taking any medication so the pred can't be masking at the moment. I feel that such a dangerous drug is not worth it if I'm not feeling sick in anyway. There are some sites out there that say remi is chemo. Is that really true? Are u flaring up? I understand why someone suffering would want to take remi but like i said.... I'm not sick. I just don't get it. Why would I want to risk it to heal what doesn't bother me. I sound bitter. Lol. Thanks for listening to me rant!

 

[scaredypants]

Also want to clarify that I have been symptom and drug free for 18 months

 

[Jessi]

Hello and welcome to the forum.

I started Remicade after Asacol and prednisone brought me out of a flare. I feel that the Remicade did a fabulous job of getting me from post-flare to remission! It is a fabulous drug if it works for you. I hope it goes well, and that you find an even healthier you!

Good luck. :hug:

 

[Artificial]

Thanks for the reply. At the moment I'm not taking any medication so the pred can't be masking at the moment. I feel that such a dangerous drug is not worth it if I'm not feeling sick in anyway. There are some sites out there that say remi is chemo. Is that really true? Are u flaring up? I understand why someone suffering would want to take remi but like i said.... I'm not sick. I just don't get it. Why would I want to risk it to heal what doesn't bother me. I sound bitter. Lol. Thanks for listening to me rant!

hehe thats ok, everyone needs a rant sometimes

it is quite a strong drug from what I've read (not sure about the chemo thing, I havent heard that before). It might be worth speaking this through with your doctor just to find out why he wants to start you on it.

I guess although you may not have other symptoms, it would not be good to leave it untreated in case it was to get worse.

I have been flaring for over a year now and so far no other meds have helped me which is why I have to start it.

xx

 

[mickey]

Stay in control of your heath and make your own decision. If you do not agree with the doc, you can tell him to "wait and see" or get a second opinion. A doctor can suggest things, but you have the final decision. Keep reading up and make informed decisions.

 

[Mr Bedfordshire]

My advice is to go along with what the experts say! I am one of these people who used to think i know best and i feel fine and ignored the advice of doctors just because i felt fine, even though tests said otherwise.

Only you know how you feel and we can but try to describe it to experts, but the fact that the colonoscopy shows severe inflammation, id go with what they recommend.

Yes, remicade is a powerful drug and yes, it has side effects, but what with it being such a powerful drug, its not something that wont.

It seems this is another case of your consultants hitting the problem head on, and to me would suggest that the inflammation needs reducing asap and thats why theyve opted for such a powerful drug straight away.

stay positive!:thumright:

 

[moogie]

Some poeple think that because they feel fine they are fine. Some people after taking medication that made them fine think they no longer need the mdeication and stops using it. Then they ALL become sick again. That's because our PLague is without a cure.

I've had Crohn's since I was 12 and I am now 38, I've tried almost everything and had lots of sugeries. My suggestion is to be without mercy, this thing you have inside of you is a merciless killer. Get it before it gets you. Remicade sounds terrible but it's really your best bet against this foe.

Keep us posted!! and good luck!

 

[scaredypants]

Hey guys. So I've decided.... My whole 20 years with crohns I've rarely been sick or had problems and my scopes will show the same. Until I'm in pain or facing my first surgery I'm not going to humor my quack of a doctor. I've had a second opinion and talked with pharmacists (2) and a nurse as well as 2 doctor trekked and they all say its rediculous to take that particular drug at this time. All I can say is just because a doctor says to do something doesn't make it your best or only choice!

 

[moogie]

Hey guys. So I've decided.... My whole 20 years with crohns I've rarely been sick or had problems and my scopes will show the same. Until I'm in pain or facing my first surgery I'm not going to humor my quack of a doctor. I've had a second opinion and talked with pharmacists (2) and a nurse as well as 2 doctor trekked and they all say its rediculous to take that particular drug at this time. All I can say is just because a doctor says to do something doesn't make it your best or only choice!

It's your decision and you are free to choose.

Good luck stay strong.

 

[Jessi]

You sound very confident about the choice that you've made. So do you have a plan to stay on top of your disease? Will you be trying diet or a different med?

Keep us posted on your strategy and how you get along. And hopefully, it will be something you can eventually post in our Success Story Forum.

Good luck and best wishes. :hug: