HealingWell
Search Close Search
☰

On stopping meds - Need your input!

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/19/2011 11:26 PM (GMT 0)
So I've had Crohn's for 15 years. The first few years were quite a rollercoaster but now I've been stable for a long time, last scope showed mucosal healing. I've been on 6mp for over 10 years, it's been a great drug for me, but I'm so tired of the side effects- mainly infectious side effects. I got mono 2 yrs ago and I was sick as a dog, in the hospital for 10 days, and now I'm scared I'm going to develop a lymphoproliferative disorder from this EBV + 6MP combo (well described in the literature). I've had a WBC ranging in the 3-3.5 for over 10 years and I just hate that. I'm on my 2nd 3 month long treatment of antifungals because I have a nail fungal infection very typical of the immunosuppresed state (quote from my dermatologist). Also, I had a raging herpetic gingivostomatitis (the virus that causes cold sores, well I had them EVERYWHERE in my mouth and down my throat, with high fevers, vomitting ...) and ever since I have a huge and ugly core sore about every month or every other month. Like right now. I'm on antivirals for that. I'm working with kids who are sick all the time and it's stressful because I know I'm prone to catching all kinds of bugs

I'm feeling ok. and I would like to see how I would do without the 6mp. My GI says to wait a few more years. I don't want to, i'm ready and I'm about to do it without her "consent". The thing is that I really like my GI and I don't want her to get mad at me for doing this... (not that she will be, I mean, Im a big girl, but still).

So, what is your experience? Opinions?

Thanks!
Posted 12/20/2011 12:06 AM (GMT 0)
You should be on some treament to maintain remission. How 'bout a lower dose of 6mp and add pentasa? You could try pentasa alone, but it might not be enough. Maybe look into some natural remedies to help combat those side effects.
Good luck!
Posted 12/20/2011 12:43 AM (GMT 0)
Have you had your 6-mp metabolites measured (to see that you're in the proper dosing range)? It could be that you're taking more than necessary for you.
Posted 12/20/2011 12:52 AM (GMT 0)
I took Pentasa in the beginning, it didn't work... that's why I had to switch to 6mp.

As for the metabolites, yes I had them measured, and it came back ok.
Posted 12/20/2011 1:43 AM (GMT 0)
If you are worried about your immune system then you may want to get your blood levels of vitamin D measured. Vit D helps modulate your immune system. For example I have had only one cold in the last 5 years after raising my blood levels of D. Having adequate amount of vit D can only help you.

I don't have much experience with most meds including 6MP but I would be wary about discontinuing it. Getting off a med can sometimes be worse than never taking it in the first place. So I defer to other members here when talking about your meds.

You may want to search this forum about LDN. Some have found it to be very effective with few side effects. I believe some have commented that it can be taken with or without other meds like 6MP but again I defer to the more experienced members of this forum.

www.youtube.com/watch?v=5p5nhzP2OaI
www.healingwell.com/community/default.aspx?f=38&m=2157045
Posted 12/20/2011 2:01 AM (GMT 0)
Maybe try a different med.
Posted 12/20/2011 2:47 PM (GMT 0)
The reason your Crohns is in check right now is because of the 6mp.  You stop the 6mp, your disease could very well return.  I am a firm beleiver in maintenance meds at all times.  I learned a very painful lesson in what no meds can do to someone, and I sure would hate for that to happen to you too.  Good luck!
Posted 12/21/2011 12:47 AM (GMT 0)
I was on azathioprine for 15 years and had been in remission for 6 years when my GI suggested I stop it and see how I went as had been in remission for so long. Seemed like a sensible idea at the time. I also had issues with catching everything that went round. Really bad idea. Six months later I came down with worst flare I had had for 20 years and had to start on Humira as well as back on the azathioprine and also the pred. Four months into the Humira I developed really bad joint/nerve pain around all my joints and have now been dx with Lupus due to the Humira. Stopped that after 4 months but still on the azathioprine and will stay on it for life as it works well for me.

Think really hard before stopping it if it is keeping your CD under control as I wish I had never stopped it as now have another immune system condition to add to my list because I had to go on Humira as well to get it under control again, even though the Humira itself did nothing for the actual CD ironically.
✚ New Topic ✚ Reply