Coming off all meds?

[lilninja]

I was wondering if anyone has come off all their meds and been fine? if so how long have you been without? How long where you on the meds? Have you had any real problems not being on the meds? thanks for any answers

 

[Pirate]

Hi Lilninja, I went of my meds for about 6 yrs. At the time I was coming off Pred and taking Pepcid as needed. I had quit smoking and I did really good, as long as you don't count the rare food induced pain that I caused myself once in a while. I think the smoking part was the biggest reason for the remission.
You really have to be in a true remission for a while to attempt this. I wouldn't recommend it for everyone. I know everyone would like to be able to not take the meds, but it is a rare thing for someone to be able to do.

 

[theend2]

I can tell you from first hand experience that you do not want to do that. You might be ok coming of the prednisone only being 15mg per day but you could get very sick also and not from the crohns. If prednisone isn't discontinued gradually, you run the risk of developing prednisone withdrawal symptoms. If you take prednisone for more than a few weeks, your adrenal glands stop making cortisol. A gradual reduction in prednisone dosages gives your adrenal glands time to resume their normal function.
If you abruptly stop taking the drug or taper off too quickly, you'll develop symptoms of prednisone withdrawal — also known as cortisol deficiency.

So I would not just stop the prednisone. For me everytime I get down to 20 or below I start getting mucus and blood in my stools I start having more bowel movements and then diarear then nausua and dizziness and then I am basically bumming and cant get out of bed from being sick this takes about 3 weeks then it takes another 4 weeks to get back to being able to go to work again.

So don't do it.

 

[lilninja]

thanks for the advice. not looking to stop taking my meds anytime soon. just wondering if it can be done in the future. lol

 

[Pirate]

I should have also mentioned that when I did this I had consulted my GI and we decided to give it a try. I had been on the Pred for quite a long time and I had to taper for almost 4 months to get my body to work the way it should on its own.

 

[theend2]

lilninja please be careful hate to see ya get sick.

 

[InkyStinky]

thanks for the advice. not looking to stop taking my meds anytime soon. just wondering if it can be done in the future. lol

Hi lilninja!

I had a 3yr med-free remission ('06-'09). In '06 I was only on 6mp and it had been 2yrs since I'd had a flare serious enough to put me in the hospital. The 6mp was keeping my Crohn's under control, but I was so fatigued it was really hard to function. The "med-free" idea came from my GI at that time. He wanted me to have a break from all medication because of the fatigue, and so he tried stopping the 6mp several times, but each time the bleeding/D would start again. My church had a prayer service for me and after that I was able to stop the 6mp without a flare. And then had 3yrs before my current one.

Would I stop all meds again? I don't know. With this current Crohn's flare I also developed blood clots - I might have a clotting disorder, but it seems that the Crohn's flare most likely triggered whatever caused them. If I had stayed on the 6mp could I have avoided this flare and the clots? I don't know.

I'm thankful for the med-free years, but now my autoimmune issues are even more complicated than they were before. Just my perspective - I don't know if this is typical or not.