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Remission Medication Dosage Question

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Posted 9/19/2011 9:27 PM (GMT 0)
My doc has been tapering me down from 60 mg of pred and 8 x 500 of pentasa. My current total meds consist of 3 x 500 pentassa a day. My blood work was "perfect" last time I went to the doc. I feel mostly good to great, although it does not take much to get me off. If I eat too much honey or coconut flour, then I have d. My stools are mostly loose but once or twice a week good. I feel 1000% better than even a year ago but still probabbly not perfect.

The doc believes that through the diet and suppliments that you can get to zero meds. She believes that the lower you go the better. Then if something comes up, a low dose will be effective. I have read too many warnings here to feel comfortable going to zero meds. I have been on 3 x 500 mgs of pentassa for a long time. I think she is going to recommend going to zero.

So my question is What is the minumum dose you would take of pentassa if you were in remission? Also, do you see LDN as a remission maintenance option? Is there another med you would recommend for maintenance?

Thank you

David

Posted 9/19/2011 11:52 PM (GMT 0)
I read somewhere that 2000mg of Pentasa/day, meaning two 500mg tabs twice daily is the minimum Pentasa dose for maintaining Crohn's remission. However I also read that Pentasa doesn't do better than a placebo for maintaining remisssion. My GI doc still believes that Pentasa helps, so I take it, but who knows. I was in total remission the past two years, but I think I'm in a flare again. Hope this helps.
Posted 9/20/2011 12:22 AM (GMT 0)
HI Gumby
I think I read the same thing, that it is a min of 2000, but that tit is not better than a placebo. When I asked my doc she that is true generally but because I have small bowel issues this is not true. But I am not even doing that I am taking 1500 a day.
Anyway, thanks and I am sorry you are feeling like you are going into a flare. Is ther anything you can do to head it off a the pass, meds? eat? drink?
Dave
Posted 9/20/2011 12:48 AM (GMT 0)
I would try to go down to the 2000 mgs. Watch how you feel, and if things start acting up go back up on your dose. I take the sister med to Pentasa called Asacol. There are those who try to say these only have a placebo effect, well I found out that is not true.

While in the hospital they stopped giving me my Asacol, and within days the diarrhea started and got really bad. Its taken me awhile to get back to how I was.

CrohnieToo is one who always tries to lower her Pentasa, but everytime she goes below a certain level her symptoms return. So for some of us, these meds DO work. Hugs!
Posted 9/20/2011 1:56 AM (GMT 0)
Hi Gail
I have been taking 1500 mgs per day for the last 6 or more months. I still feel good. But I know my doc is going to suggest I go lower. I am pretty sure she is going to suggest to stop all meds. If you were doing good on 1500 of pentassa, what would you do, knowing what you know.
What are your thoughts please Gail.
I respect your opinion
Dave
Posted 9/20/2011 8:26 PM (GMT 0)
Hi Dave,
When I was feeling great, I had thoughts of going off the Pentasa even though I had no side effects from it, just because even with insurance, my co-pay is quite pricey. I stayed on it because I loved feeling so healthy and wasn't willing to take the risk. Thanks for your concern about my flare. I have a great doc who is doing his best to help. I have been on Cipro and it has stopped the big D, but now I am constipated, bloated and in pain....I don't know what's worse! I'm having an endoscopy and colonoscopy on Oct. 6, so we'll see what's going on. Meanwhile, I'm pretty miserable...just plain chicken broth gave me cramps today. Thanks for your concern though. If you are feeling great, then my vote is you keep doing whatever you are doing. It's easy to pretend when you feel well that it will never come back, but Crohn's is a very sneaky and evil illness!!!! Good luck
Posted 9/21/2011 12:41 AM (GMT 0)
Dave my personal opinion is if it ain't broke don't fix it. I would stay on the Pentasa. Its a very mild med and the side effects aren't there like alot of other meds. Gumby makes a very valid point that Crohns is a very sneaky and evil disease, and I always think its funny how folks think well I am feeling well now, so I will stop the meds. The disease likes to sneak back in, and bite you in the butt. It might not happen as fast as it does me, CrohnieToo usually makes it a couple of months if I am not mistaken, but it does come back and usually worse than before. You are doing so well, why mess with it??? Hugs!!
Posted 9/21/2011 12:02 PM (GMT 0)
David,
I'm on 4.5 mg LDN as of 5 weeks ago and dropped the 8x500 Pentassa about the same time. Can't be sure that I continue to be in remission, but seems like it. There are some posts re LDN on the UC forum.
Posted 9/21/2011 8:33 PM (GMT 0)
I think I will stay on the pentassa for now, maybe the next 6 months. But I really like the idea of LDN as everything I have read says that it has even less side effects than pentassa.

I have to get my dod to buy into ldn. She was invloved in Mount Synai's studies and they could not correlate positive results so she is not will to perscribe it to me.

Thanks for the guidance, it has helped me come to a conclusion at least for now

Dave

Posted 9/21/2011 8:44 PM (GMT 0)
Dave, based on your description of mostly loose stools, I do not think you have achieved remission. Remission is the absence of any symptoms. Blood tests showing no inflammatory factors are not sufficient evidence to declare remission.

I would not stay on 1500 mg of Pentasa. I would increase it, or talk about other changes you might make to your meds, to get to a place where all your bowel movements are solid.
Posted 9/21/2011 9:02 PM (GMT 0)
kazbern
That is a different and very interesting perspective to me. I guess I want to be in remission so bad that I overlook evidence that I am not. You have given me real pause for thought. In fact I would say your comment is down right sobering to me.
I guess the fact that I can function successfully is not enough. I guess it is the 100% absence of symptoms that is the best indicator of no further damage.
Thank you for your insight, I truly appreciate it, but I can not say you made my day
d
Posted 9/21/2011 9:45 PM (GMT 0)
Kazbern is correct. i have almost zero symtoms and i go to the bathroom 2-3 times a day, perfect poo every time, no pain, some mucus from time to time.

you are on the right road tho!!
Posted 9/21/2011 9:58 PM (GMT 0)
Dave if you are interested in trying the LDN then go for it. But in the meantime, I would still stay on the Pentasa until you are sure the LDN is working for you. LDN works really well for some, but there have been some who were not successful with it. I am not interested in it, as I need my opiod pain meds becuz of my arthritis and fibromyalgia issues. Hugs!
Posted 9/21/2011 11:37 PM (GMT 0)
This might be really silly and I might be losing the plot, but if I can control my BM with more probiotics and potentially a change in diet (for example), then that would be the last of the symptoms. If i have to work so hard at controlling the symptoms am I in remission or have I figured out how to control symptoms. To me remission is no harm being done to the gut, vs symptom control, where you feel good but the gut is still doing bad things.

I guess I keep up the pentassa.

I have been pushing the diet (almond flour, honey,..) as I am thinking to myself so what is it is loose. I feel strong. I have been eating a bit of raw fruit and veg. I guess I cut back all the sweets and stuff from the diet. Extra low carb...

I need some good research on LDN to give to my doc. I want her onboard. I feel like if i start taking meds she does not agree with then it is time for a new doc and I do not want to change docs. Any help with this is greatly appreciated.

Then I look at things in a couple of months.


Sorry for the incoherent thinking and rambelling. I have been telling myself I am in remission for months and this thread is kind of throwing me.
Posted 9/21/2011 11:56 PM (GMT 0)
Dave, I'm sorry I rained on your parade.

I'm going to get on a soap-box here, I apologize in advance.

Someone is likely to say to you (maybe your GI!) "Oh, that loose stool is just IBS." I hate that. I hate that people are ready to blame some nebulous diagnosis, which is in itself just a name given to something DRs can't really explain, to brush off an IBD patient when they complain about bowel dysfunction not associated with inflammation detectable by blood work (or even colonoscopy). I really believe that you can get back to solid stool. I have. Noorie has (although her comment about sometimes seeing mucous bothers me - no mucous either in remission!). OK, soap box over.

I think you are on the right path. I would hesitate to recommend further dietary restriction, because that's just not my style. You've gotten yourself very far along with meds + SCD, so who am I to say anything different? I really think you could do better with more 5-ASA.

That all being said, I'm getting ready to talk to my GI about reducing my Pentasa. I have tinnitus from the darn drug and it's annoying. I went off it completely this summer for about 2 months and the tinnitus mostly went away, but I also had a really fun bought of GERD and my motility issues became more difficult to manage. I'm back on my full dose of 3 g/day and I'd like to cut it back to 2g/day, see how the tinnitus goes and then maybe drop down to where you are, at 1.5 g/day. I still have 1.5 g/day of sulfazine which I plan to stay on forever, to prevent joint pain.

Since I adopted a gluten free diet I have had only one loose stool. ONE! In 4 months! That's better than my husband's record and he has no gastrointestinal illness.

You can get there too.
Posted 9/22/2011 5:39 PM (GMT 0)
kazbern, you did not rain on my parade, you just gave me a valid perspective. I appreciate your insight and the other folks who have shared their thoughts. Thanks, really

I need to figure out if I am going to focus on the symptoms or treat this as a general Crohn's issue.

If I take a symptoms approach I will adjust diet, look at supplements including probiotics, carb vs protien...

I do not want to take more pentassa, as I was having joint pain also at higher dosages. So I think, if I take a CD approach, I have to try LDN. The issue there is my doc does not support LDN and I really hesitate to take a medication that she does not support. I already am doing the diet thing that she is not really on board with, if I step away on the meds, then I think I need a new doc and I do not have to go through finding a new doc.

What a journey, I post with the thought of no meds and am now at the position of what am I going to add...

Thanks again
Dave
Posted 9/22/2011 10:58 PM (GMT 0)
That marvelous Dr Eugene May from the old CCFA "Ask the Specialist" forum always insisted the med(s) that got you into remission are the meds to KEEP you in remission.
Posted 9/23/2011 2:19 PM (GMT 0)
Thanks for the back and forth, insight and letting me work through this.

Here is the plan.

I have made fantastic progress with the diet and meds I am taking. I do not want to take more meds, so I am going to really focus on diet. I did not think I had to, but I am going to start a food diary. I am going to add some more tweaks and cut some things out I susupect are causing some of the issues (still weaker coffee, almond flour baking,..). As I thought through this I realized that I was thinking I am in remission so if I am basically doing great and I have loose stools then so what. My guess is I can figure this out with food. One example of this is the books tell you that low carbs means you burn fat so you do not need to carb load for big exercise. I sort of believe this, but I also carry dried dates and apricots for my long bike rides. I always have loose stools after a ride. Tomorrow I am going long but not bringing any carbs, just carb free electrolytes. I bet on the diet and my ability to figure out the tweaks.

I will give it 6 months If I am in the same state I am going LDN. I am staying at the same dose of pentassa. If I can not get my doc behind this program I will get a new doc.

Want to say thanks again for helping me think this through. Have to say I felt a little of balance there for a bit and now feel good about my program once again

All the best

Dave

 

Posted 9/23/2011 3:46 PM (GMT 0)

Just wanted to say that your current plan sounds great.  It can be frustrating to have to re-work your initial health goals, but at the same time, think of how far you've already come! yeah

I recently re-started my food diary (I kept it faithfully my first 4 months on SCD and then lost interest as I was feeling so much better!)  This Sunday is my 8-month SCD anniversary and I decided to re-read my entries and re-start the diary.  It was amazing to read my old entries and realize how much better I'm doing now - and it definitely helped me notice early on (and even now) what things might trigger D or C or what things I can only eat sometimes (like SCD-legal pizza).  I would definitely recommend keeping one - it's a really great resource. 

I don't know if you've tried it already, but a lot of folks use S. Boulardii to help with d and loose stool.  It might be worth a try if you'd like to hold off on LDN or other RX medications.  The BTVC forum on yahoo discusses it a lot if you need a recommendation.

I've been on 4.5 mg of LDN for 2 months now (I gradually built up from 1.5 mg, to 3 mg then to 4.5 mg) and that, along with SCD and Remicade makes me tentatively feel like I'm on the road to remission - or at least feeling better than I have in about 8 years!  No pain, bloating, nausea, blood, mucus, D or C, or fatigue - just 1 well formed bm a day.  I'd love to say this means I could quit the Remicade cold turkey, but I know it's an important part of me staying healthy, so for now, I'm sticking with the plan I'm on and just taking it one day at a time.

Just wanted to send lots of good thoughts your way.  You are doing great - and have always been very inspirational to me when I've seen you on the boards - so don't give up hope!

Posted 9/23/2011 4:04 PM (GMT 0)
Hi CDS1

I was talking with my wife of 30 years about this and she tried to help. She said what she felt would help. "You are in remission, what do those folks know?", and "You need to stop going there, it makes you upset", "Just keep doing what your doing, look at all the progress". Great lady but she does not and can not understand. Rather interesting that we share this understanding more than my wife. (not blaming just an observation)

I was never giving up nor did I lose my understanding that I am blessed that the diet is working so well for me. Also, I am not changing my health goals, I do not think I have to. My health goals are 100% remission. I was on the trajectory to get there (and thought I was there), I just need to make the changes to get back on the trajectory. I really am so close. What unsettled me, is the change from "I am healed" to "I am not healed and need to do more". It was an identity thing. And also, I have been so sure of the right course of action and then feeling unsure of the next steps.

Thanks for your encouragement and validation of my "new" plan. It makes me feel good that you feel this is the best approach.

OK, hands in the middle, One, two, three "TEAM SCD", ready break!

Thankfully

Dave

Posted 9/23/2011 4:50 PM (GMT 0)
#TeamSCD!! :-)

and always - #TeamRemissionForAll!!! 

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