pentasa and so many side effects

New Topic Post Reply Printable Version
54 posts in this thread.
Viewing Page :
 1  2  3 
[ << Previous Thread | Next Thread >> ]

carmen
Regular Member


Date Joined Feb 2003
Total Posts : 499
   Posted 12/28/2009 9:24 AM (GMT -7)   
Who has side effects from pentasa ,and what are they...
 
Thanks
Carmen

sickandlucky
Regular Member


Date Joined Oct 2009
Total Posts : 253
   Posted 12/28/2009 10:36 AM (GMT -7)   
While I was on pentasa I experienced a few weird things.... hair thinning, really bad back pain, headaches, anxiety, weird heart feelings etc. I don't know if it was because of the pentasa for sure though, could be any number of things. I'm now on pred and imuran so naturally the hair is still thinning, I still generally don't feel normal. But since going off the pentasa my back pain has gotten about 75% better and I've had less anxiety and no weird heart sensations.
Again, not sure if it was from the pentasa or what... I had been under the impression it was a super mild drug with relatively few side effects but after looking into I found some disconcerting stuff.
female 19, diagnosed crohns december 2008
entocort/pentasa previously, now prednisone & imuran, probiotics, calcium w/d, digestive enzymes & prenatal multivitamin


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/28/2009 10:41 AM (GMT -7)   
Pentasa gave me more diarrhea. I am now successfully maintained solely on Asacol and in remission. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 12/28/2009 2:05 PM (GMT -7)   
I started to suffer with joint pain and have now come off it and joint pain no more. Bev x wink
Diagnosed with crohn's at 13 now 42
resection, right hemi 1993 In remmision from 93 till last sept with no meds or docs
2 resections small bowel  and fistula jan 09 and given temp stoma.  reversal 1st week of Jan. Meds:Pentasa 500mg 3x day,  B12 shots, every 3 months, iron syrup,loperimide,folic acid,  citalopram 60mg (for Anxiety.)


onedaymore
Regular Member


Date Joined Apr 2009
Total Posts : 111
   Posted 12/28/2009 10:07 PM (GMT -7)   
sickandlucky said...
While I was on pentasa I experienced a few weird things.... hair thinning, really bad back pain, headaches, anxiety, weird heart feelings etc. I don't know if it was because of the pentasa for sure though, could be any number of things. I'm now on pred and imuran so naturally the hair is still thinning, I still generally don't feel normal. But since going off the pentasa my back pain has gotten about 75% better and I've had less anxiety and no weird heart sensations.
Again, not sure if it was from the pentasa or what... I had been under the impression it was a super mild drug with relatively few side effects but after looking into I found some disconcerting stuff.


Wow, I didn't know that Pentasa caused back pain . . . I've been on it for about two weeks, and the right side of my back (where my kidney is, approximately) aches all the time. I thought it was from the doctor poking too hard. That makes more sense though!

I haven't noticed any other side effects, other than getting a pill stuck in my throat this morning and choking like a moron.
Diagnosed with Crohn's in 2008 at the age of 22.
Currently taking: Azathioprine, Pentasa, Zofran, Tramadol, Welchol, Promethazine, Ambien, Metoclopramide, Omeprazole, Hyoscyamine


sickandlucky
Regular Member


Date Joined Oct 2009
Total Posts : 253
   Posted 12/29/2009 7:40 AM (GMT -7)   
I used to choke on those stupid pills all the time too! They're like horse pills. Ugh!
And that's exactly where my back pain was, kidney area. It got to the point where I'd have to lie down with my heating pad for some relief! Since having gone off the pentasa it's gotten alot better!
female 19, diagnosed crohns december 2008
entocort/pentasa previously, now prednisone & imuran, probiotics, calcium w/d, digestive enzymes & prenatal multivitamin


wannerbee
Regular Member


Date Joined Dec 2009
Total Posts : 40
   Posted 12/29/2009 8:52 AM (GMT -7)   
you all seem to be on so many meds i am a crohnie no " D" BUT CONSTIPATION plenty of mucus and little sqwiggly poo s am on asacol and predfoam enamas the foam easies the mucus and the urgencies but not the conspation not having a lot of fiber drinking plenty of water When passing the sqwigglies painfull in the rectum as if a big one on the way but no luck any suggestions would be appreciated as for all the Meds you are on wat you say about them frighten the hell out of me was going to say frighten the SH**t out o me HEY that mite work thanks for listening BUTCH

meshice
Veteran Member


Date Joined Jan 2003
Total Posts : 734
   Posted 12/29/2009 12:04 PM (GMT -7)   
I've been on Pentasa for about 10 years now with no problems. My mom has taken it way longer than that with no problems either.
"We can't beat this disease, YET, but we can't let it beat us!"
Mandy

"Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34


amytupelo
Regular Member


Date Joined Nov 2009
Total Posts : 38
   Posted 1/2/2010 7:25 PM (GMT -7)   
i have been on pentasa about 8 years - off and on. i have compliance issues so i stopped taking it completely since i was just wasting money by not taking it correctly. but both times that i started it i noticed more hair on my brushes and combs than usual.. but i have so much hair it was not a "noticable" loss.
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!
i also had an experience where i accidentally washed my pentasa inthe pocket of my khaki pants and it stained them maroon in the pocket.. i dont know if it is some chemical componant inthe water here.. or maybe in me? but someone else please say this happens to you! this has only occurred when i have taken pentasa. it is so weird!
32/F
crohn's terminal ileum - 11 years
pentasa, entocort 6mg, b12, align, canasa
allergies: remicade, imuran, 6-mp, cipro, levaquin


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4101
   Posted 1/2/2010 8:00 PM (GMT -7)   
I don't notice anything maroon with the Pentasa. I've been on it for a couple of years. My hair was falling out at first, but I was also very sick at the time and it could have been from malnutrition. I'm not having any side effects from it now. I drink a ton of water to wash it down when I take the pills. If they are too large for you, you can get them in 250mg and they are smaller, but you have to take more pills.
51 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 4 500mg pills per day, Metamucil and colace for constipation, probiotics


sickandlucky
Regular Member


Date Joined Oct 2009
Total Posts : 253
   Posted 1/3/2010 6:58 AM (GMT -7)   
amytupelo- I also had maroon urine staining problems on pentasa
female 19, diagnosed crohns december 2008
entocort/pentasa previously, now prednisone & imuran, probiotics, calcium w/d, digestive enzymes & prenatal multivitamin


amytupelo
Regular Member


Date Joined Nov 2009
Total Posts : 38
   Posted 1/3/2010 7:36 AM (GMT -7)   
glad there is someone else out there! ;)
32/F
crohn's terminal ileum - 11 years
pentasa, entocort 6mg, b12, align, canasa
allergies: remicade, imuran, 6-mp, cipro, levaquin


Homeboy
Veteran Member


Date Joined Dec 2005
Total Posts : 637
   Posted 1/3/2010 4:20 PM (GMT -7)   
Pentasa contains mesalamine, similiar to asacol, lialda...

Are you taking folic acid supplements?
Mesalamine pulls folic acid from your body...
Humira 2 x month, Lialda 2 x day, Imuran 100mg x day, Remeron 30mg x day, Pain Meds, Zantac 300mg 2 x day, Prednisone 2.5mg x Every third day(01_02_10), Vitamins = B12 Injection(Once x Week), Magnesium, Calcium, Multi-Vitamin, Potassium, Folic Acid. (Phenergen 25mg Per Request Needed).
semi@jengland.info -- FaceBook


CrohnnieMan
Regular Member


Date Joined Aug 2008
Total Posts : 190
   Posted 1/3/2010 7:12 PM (GMT -7)   
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.

sgirl
Regular Member


Date Joined Jul 2009
Total Posts : 417
   Posted 1/4/2010 10:49 AM (GMT -7)   
i've only been on it for about a week, and i've noticed my lower back hurts too! but then again, I was having lots of joint pain before I started it, and I keep throwing out my back. So I don't know if it's actually a side effect. since starting it i've also experienced: muscle weakness, muscle spasms (think restless legs all over), and a little anxiety.
Diagnosed with UC in February 2009.
Diagnosed with Crohn's Colitis December 2009.
Flaring since October 2008

Medication: tapering off Prednisone (5mg), Pentasa 6x daily, Imuran 100 mg, hydrocortisone enema nightly, multivitamin. Probiotics through yogurt.


Mitzo
Veteran Member


Date Joined Dec 2007
Total Posts : 536
   Posted 1/4/2010 7:14 PM (GMT -7)   
I took it for 7 years with side effects but going back on after a 6 month break has given me back pain anxiety and worse D. Forget it.
23 years of UC which started after quitting smoking. In and out of flares which are usually triggered by antibiotics. Latest issue is endless diarrhea without blood or mucous.
 
 

 


AzJohnny
Regular Member


Date Joined Sep 2006
Total Posts : 171
   Posted 1/4/2010 8:02 PM (GMT -7)   
On it since April 2006 with no side effects.
AzJohnny


I feel a whole lot more the way I do now than I did a little while ago.
Crohn's Dx April 2006. Pentasa and Entocort EC


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 1/5/2010 2:26 PM (GMT -7)   
I've been on and off pentasa for several years with no side effects. My GI says it is not absorbed systematically, so it is very safe.

farfrmnormal
Regular Member


Date Joined Oct 2009
Total Posts : 117
   Posted 1/5/2010 7:36 PM (GMT -7)   
I was on Salofalk and Pentasa - after reading this I now know that all of those things I was feeling were side effects.
Pain on the left side kidney area of my back
Maroon stains on the toilet seat
severe D (Actually caused the abscess I had)
Anxiety & mood swings
Blood in my urine (so much so I had to undergo a cystocopy and now see a kidney specialist)

I'm currently waiting for my first remicade infusion next Thursday.
- Diagnosed Nov 08' but undiagnosed for 13 years prior with no major problems
- First major flare Aug-Sep 09 - I attribute it to intolerance to meds and crappy GI
- Perianal abscess - EUA with drainage and Seton put in
- Meds: Flagyl & Remicade to start January 14/10


Kittys Kat
New Member


Date Joined Jan 2010
Total Posts : 11
   Posted 1/24/2010 4:14 PM (GMT -7)   
I have been on pentasa for 2 weeks now, I am taking 4mg oral sachets with which I just get a mild headache and a little quesy but they pass quickly and at night I have to take liquid enemas I really don't like these, I can administer them fine but feel awful when I take it quite crampy which passes but def feel funny for a while after??
Not sure if I should talk to my Doctor or what to do I also have not been diagnosed with anything yet just have had endoscopy and colonoscopy they said the bowel was inflamed but I wont have results of biopsy for 2 more weeks has anyone had an inflammed bowel and it not been UC or Crohn's?

Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 1/24/2010 7:10 PM (GMT -7)   
I had to stop Pentasa a few weeks after taking it because it sent my heart rate up to over 130 resting.

Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 1/24/2010 7:19 PM (GMT -7)   
Well since this is a new post again, I just stopped salofalk 5-asa because it caused extreme fatigue the same result I get from prednisone. Weird eh? Like 16-20 hour sleep every night. As my dose dropped so did my hours of sleep so I know it was the salofalk. See GI next month and an going to try Asacol as nanners said.
Male with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003.Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control.5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


Jackie77
New Member


Date Joined Feb 2010
Total Posts : 1
   Posted 2/3/2010 10:43 PM (GMT -7)   
I was diagnosed with UC in January and was immediately put on Pentasa.  1000mg 4 times a day.  Less than a week later I started getting headaches and one morning I woke up with a few hives on my arm.  By the next day the hives spread all over my body, I had a fever and the headaches were accompanied by sensativity to light and a ringing in my ears.  My neck became so stiff I couldn't move.  The day I was going into the Dr, I also had stomach cramps and vomiting.  My GI Dr sent me to the ER fearing meningitis.  After ruling this out, the ER Dr was convinced I had chickenpox. 
 
My initial reaction to these symptoms was an allergic reaction to the Pentasa.  The hives were similar to what I experienced when I realized I was allergic to Sulfa drugs.  I fought the Dr against the Chickenpox diagnoses; I had the Chickenpox as a child, but he assured me you could get it again and my symptoms were the same as adult chickenpox.  I went home skeptical, but Dr knows best, right?  4 days later and my Chickenpox test came back negative.  I am convinced this was an allergic reaction to the Pentasa although I am willing to give it one more chance to see if the symptoms come back. 
 
I've been on a search to see if anyone else has experienced this with Pentasa.  At 29, I'm just now starting my life living with UC and what a way to start!

Wren12
Regular Member


Date Joined Jan 2010
Total Posts : 42
   Posted 2/3/2010 10:57 PM (GMT -7)   
Jackie77 I've just had a similar reaction (hives) to Imuran and I am also allergic to sulfa based drugs. Waiting to see what meds I"m going on next...
Diagnosed with Crohn's in November 2009 but suffering since I was a child.
Currently weaning off Prednisone and just started Imuran


jessaccount22
Regular Member


Date Joined Feb 2010
Total Posts : 21
   Posted 2/4/2010 7:51 PM (GMT -7)   
i've been on it 3 weeks, so far no side effects. I am tired , but tha'ts normal. Acne..... i don't know if it's the entocort, or pentasa, 3 wks ago i had a clear face, now i have a pizza face
New Topic Post Reply Printable Version
54 posts in this thread.
Viewing Page :
 1  2  3 
Forum Information
Currently it is Saturday, December 10, 2016 7:46 AM (GMT -7)
There are a total of 2,735,828 posts in 301,337 threads.
View Active Threads


Who's Online
This forum has 151438 registered members. Please welcome our newest member, stevclemon.
289 Guest(s), 8 Registered Member(s) are currently online.  Details
Bucko, magoo2, Pratoman, fibrocushie, houseboy, trumpet123, iPoop, LanieG


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer