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pentasa and so many side effects

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Posted 12/12/2010 7:26 PM (GMT 0)
I was allergic too, made my insides itch. It was very strange. Set me back about 3-4 months. That was the main catalyst to switch to LDN for me.
Posted 12/12/2010 8:33 PM (GMT 0)
I was on Pentassa for 3 days and developed terrible joint pain and went off medication after 3 days.
Posted 12/13/2010 3:57 AM (GMT 0)
Brown stains and joint pain here also. Doc took me down to 3 pills a day.

SCD and Entrocort seems to be working and I am having more good days then bad lately.

I think the dos will raise me to 4 or 5 pills per day in the new year.

Dave 

Posted 12/13/2010 11:29 PM (GMT 0)
Entocort, at the two highest doses, definitely caused acne for my daughter...it wasn't too bad, but was really persistent. 
Posted 12/28/2010 8:12 PM (GMT 0)

Nanners said...
Pentasa gave me more diarrhea. I am now successfully maintained solely on Asacol and in remission. Good luck!

Nanners,

I'm stopping Pentasa today as I also believe it's giving me worse diarrhea?  I'm continuing with Entocort and taking imodium as necessary.  I've been having disintigrating diarrhea for a week now.  Also lower right stomach pain and zero appetite.  When do you determine it's time to go on prednisone (only 10 as cannot do 40) or enter the hospital for an IV?  What is Asacol?

Posted 12/28/2010 9:00 PM (GMT 0)
NancyP, Asacol is another formulation of mesalamine. It is similar to Pentasa but works in a slightly different area of the colon I think. Asacol worked pretty well when I took it, but Pentasa stopped the diarrhea & bleeding for me.
Posted 12/28/2010 9:38 PM (GMT 0)

CrohnnieMan said...

amytupelo said...
the strangest thing that i have never seen anyone else talk about is how it makes my urine that splashes up on the underside of the toilet seat stain a maroonish color - i have had to replace all of my toilet seats with plastic ones cause the wooden ones stain permanantly. it is embarrassing and i have to remember to wipe the underside of the seat off before any boys come over and wonder what the heck i do on the toilet!

Funny you mention that. My urine doesn't have a maroonish color when it comes out, but if it dries on the toliet like you said it does have that similar color. I figured it was one of my meds, but didn't know which one.

 

Mystery now solved for me too.  I had been wondering.

Posted 12/29/2010 3:55 AM (GMT 0)
Hey, I've seen those brownish urine stains on my toilet too! I thought it was from the probiotics.
How does the Pentasa cause this?
Posted 12/30/2010 12:44 AM (GMT 0)
I took pentas, for 6 months leaving me with more side affects than the disease itself.Terrible attacks bad diarreah if your experiencing something but the norm,this is not for you. ask your doctor of a better option.
Posted 12/30/2010 3:07 AM (GMT 0)
My hair falling out however it got even worse when placed on entocort...bad headaches but I am now on Elavil (amytriptalune sp?) to help prevent the headaches...Tired but again that is a constant it seems...
Posted 12/30/2010 3:54 PM (GMT 0)

teenw/cd said...
I took pentas, for 6 months leaving me with more side affects than the disease itself.Terrible attacks bad diarreah if your experiencing something but the norm,this is not for you. ask your doctor of a better option.

 

 

Thanks for your input as I too think this is what's been giving me "d" for a month! Now only taking Entocort to see if that controls my flare and gets me into remission!

Posted 12/30/2010 4:37 PM (GMT 0)
When my daughter was on pentasa, she was taking so many meds....Who knows what was causing what! I clearly remember them coming out looking the same as they went in! She definitely did not like them big blue pills! I would find them hidden places :(
Posted 2/17/2011 5:18 PM (GMT 0)

Sorry to be reopening an old thread but I couldn’t see anyone giving an answer to the "Maroon Stains" on the toilet.  I have been taking Pentasa 500mg (4000mg daily) and have been on it since October 2010 when i was diagnosed with a mild case.  All was good for the first few months then about a month back I started seeing these maroon stains on the toilet.  Mostly on the porcelain but sometimes on the underside of the seat.  I was blaming my roommate for a while until I read this article and someone said that it wasn’t noticed until it dried.  So i rethought the possibility that it was me.  In any case after lots of detective work and about to go to doctor I removed the "Lysol Toilet Bowl Cleaner 100g puck" after remembering it all started the day after i put it in.  "Voila" no more stains.  5 Days stain free after about a month of embarrassing conversations with roommate.   I am assuming there was a chemical reaction with the Pentasa and this Lysol product.

Post Edited (StargazerM31) : 2/18/2011 12:10:55 PM (GMT-7)

Posted 2/17/2011 5:59 PM (GMT 0)
I am considering Asacol or Pentasa, as I want to use a maintanance medicine in combination with LDN. I am sort of in remission now, LDN has helped me for 3 years, but I have learned from this board that it's absolutely neccessary to use a maintanance medicine even when in remission, and both Pentasa and all the other meds in the 5 MP group is very suitable to use with LDN, as far as I have learned. I have Crohns in jejunum and ileum, 5 narrowed areas, as of my last MR.

I asked my GI specialist for Pentasa or Asacol and he wouldn't let me have it, he claims that all new science says these medications doesn't work on Crohns at all.!!! what to think?
Posted 2/17/2011 6:32 PM (GMT 0)
Hey Bee, so many docs try to say that these meds don't work. But let me tell you if I don't take my Asacol I start flaring really quickly. I know a ton of folks here on the forum who take either Pentasa or Asacol who say the same thing. Maybe you can go back to him and tell him you would still like to try the meds, and if they don't work, then you will know. But at least give you the opportunity to try it. Hugs!
Posted 2/17/2011 7:40 PM (GMT 0)
The science doesn't say that they don't work.

They work for a good number of patients (about 30%).

It's just that the studies show that placebos also work for about 30% of patients.

So they're saying these meds are no better than placebos.

The placebo effect can be quite real in many diseases, including Crohn's.
Posted 2/17/2011 7:49 PM (GMT 0)
Hey Beave,

I can tell you its not a placebo effect for me. After about a couple of weeks of being off my Asacol, I will start flaring. I know a another mod, has the same issue if she stops her Pentasa. We will have a brief period of no problems, but within a few weeks to a month, things start acting up again. So we must be in the 30% that these work for. Luckily, except for a brief 6 month stint on 6mp, I have been successfully treated in my nearly 36 years with this disease, with Pred and a 5asa med and always got my CD back into control only using them.

Hugs
Gail*Nanners*
Posted 2/17/2011 8:19 PM (GMT 0)
With all due respect, Nanners, your anecdote says nothing about whether or not it's the placebo effect - in fact, quite the opposite.
Posted 2/17/2011 8:30 PM (GMT 0)
With all due respect Beave, whatever. I know it works for me, so I will continue doing what I have been doing. I know that when I was told after my first resection I no longer needed to take my Asacol, I ended up needing another resection only 3 years later. So now that I stick with my Asacol, I am doing great and back in remission. It took awhile to get back to remission, because I didn't take my meds as I should have.

You know I feel like you are saying I am some kind of idiot because I believe a med is working well for me. I am not the only person on this forum that has great success with 5 asa's, MANY others have found success with them too. These scientists and doctors can say what they want, but I know that this med works for me and MY doctor agrees with me. Hugs and JMHO!
Posted 2/18/2011 1:40 AM (GMT 0)
I have been on Pentasa for many years now. Can't remember when I began taking them. No side effects accept thinning of the hair. Imuran gave me extreme joint pains that sent me to the hospital. Remicade gave me hives and breathing difficulties. Last week I had to add Flagyl to that list of meds that I no longer can take. I'm always nervous to try a new drug.
Posted 2/18/2011 5:57 PM (GMT 0)
Nanners, thanks a lot, now I will contact my GP and tell him to prescribe asacol for me, I think I will try Asacol and combine it with LDN, because I don't dare to use LDN alone without any maintanance medicine, if I can, I will avoid going that road.

I have a tremendous experience as I have been using LDN for 3 years, I know LDN, but I don't have a clue at all on the main stream Crohns meds. I started using LDN when my Crohns was mild and when newly diagnosed 3 years ago. So far it has been a happy travel. :-)
Due to Dr. Jill Smith and her phase II trial on LDN and Crohns; LDN was able to bring people in remission at app. the same level as Remicade or Humira do. LDN is of course a far milder medicine with litteraly no side effects, so it's both safe and cheap. I can't wait to try Asacol:-), again, Nanners, thanks a lot.
Posted 4/14/2011 3:31 AM (GMT 0)

StargazerM31 said...
<span style="FONT-FAMILY: Verdana; FONT-SIZE: 9pt">Sorry to be reopening an old thread but I couldn’t see anyone giving an answer to the "Maroon Stains" on the toilet. I have been taking Pentasa 500mg (4000mg daily) and have been on it since October 2010 when i was diagnosed with a mild case. All was good for the first few months then about a month back I started seeing these maroon stains on the toilet. Mostly on the porcelain but sometimes on the underside of the seat. I was blaming my roommate for a while until I read this article and someone said that it wasn’t noticed until it dried. So i rethought the possibility that it was me. In any case after lots of detective work and about to go to doctor I removed the <span style="FONT-FAMILY: Verdana; FONT-SIZE: 9pt">"Lysol Toilet Bowl Cleaner 100g puck" after remembering it all started the day after i put it in. "Voila" no more stains. 5 Days stain free after about a month of embarrassing conversations with roommate. I am assuming there was a chemical reaction with the Pentasa and this Lysol product.

I am so glad you figured this out! Thank you! This has been annoying me for at least two years and I mentioned it to my GI and he didn't have a clue. I had a feeling it was related to cleaners.
Has anyone else thought the maroon toilet stains while on pentasa are possibly related to toilet cleaners?
I'm going to try to wash the cleaners off the toilet seat and see if that makes a diff. I'll try to remember to report back. ;-)
Posted 4/14/2011 4:10 PM (GMT 0)
I have never had my toilet be stained while on either Pentasa or Asacol. Interesting that a cleaner caused that. Hugs!
Posted 12/18/2013 4:23 PM (GMT 0)
52 year old male, diagnosed about eight years ago with Crohn's. Been on Pentasa maxiimum recommended dose since being diagnosed. Have had excellent results/control since then. Thank God for Pentasa and modern medicine in general.

I had lower back pain to one side but never associated it with taking Pentasa (and I'm still not certain I do). I did want to share with those that have posted about having this side effect that I was pretty miserable with this symptom/possible side effect and ended up going to a physical therapist to try to find some relief. Much of what the therapist did seemed to do nothing - but one thing worked like a charm, and still works. Perhaps it will work for you. It is a short set of stretching and strength exercises that have made this symptom/possible side effect go away for me - and stay away. I would be very happy to share details of these few exercises/stretches if anyone is interested.
Posted 12/18/2013 4:48 PM (GMT 0)
i'm definatly getting off pentasa the nextime i see my doc. i to have back pain near my side, the darn problem is i'm 16 and my doc doesn't listen. i've been takeing pentasa for three years and haven't notice any difference whatsoever. i feel like i'm just takeing pentasa for the heck of it. everytime i say i want off of it my GI just says i should stay on cus i cant prove it's not working. i don't feel any better so why take it, all this time i've been probably haveing side effects from it and thought it was my crohns. if i felt beeter from it i would take it but it doesn't make sense to just take a drug that doesnt actually make you feel better.
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