Has anyone experienced side effects from Asacol HD?

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sfc425
Regular Member


Date Joined Jul 2010
Total Posts : 385
   Posted 4/20/2011 3:41 PM (GMT -7)   
If so, what were they?

The medicine has absolutely helped my UC go into remission, as I am no longer experiencing any blood, mucous, diarrhea. At the same time I often find that I have noticeable indigestion, occasional nausea, lack of appetite. I don't know if this is related to the Asacol, though I do believe that I wasn't really having these problems prior to flaring/treatment.

I also do have a hiatal hernia which causes GERD, so I guess some of this is attributable to that perhaps. Isn't it fun when you almost always feel sick?

Has anyone experienced any kind of side effects from Asacol (HD or regular) at all, like these or otherwise?

AZYooper
Veteran Member


Date Joined Mar 2010
Total Posts : 1170
   Posted 4/20/2011 4:31 PM (GMT -7)   
I got headaches and felt crappy the first week or so and it went away. I don't remember getting heartburn from Asacol HD but many pills give it to me including Colazal(which I take now) if I take the pills on an empty stomach.

Unless medication directions say otherwise I take them with meals. Between bites in the middle of the meal. It stops heartburn and queasy feelings for me.

sfc425
Regular Member


Date Joined Jul 2010
Total Posts : 385
   Posted 4/20/2011 5:19 PM (GMT -7)   
I usually take Asacol hours before each meal. Maybe I'll switch it up and see if anything changes for better or worse.
25 Year Old Male. Diagnosed with UC in early 2006. Remission soon after diagnosis with treatment of Asacol. Eventually symptoms went away until mid 2010. Currently dealing with minor flareup and taking Asacol HD. Also living with Hiatal Hernia and GERD.

Taking: 1600 mg Asacol HD (3X daily), Acidophilus probiotic (1X daily). Librax (2X daily) and Omeprazole (1X daily) for GERD.

superdoo615
Regular Member


Date Joined Feb 2011
Total Posts : 52
   Posted 4/20/2011 8:31 PM (GMT -7)   
I got very bad headaches and nausea. I lasted about 2 weeks on it before I couldn't take it anymore.
-------------------------------------
29/m/ny Dx. UC June 2009
Current treatment:
Lialda x3 - Align (probiotic) - prednisone - percocet (as needed) - imodium - Wellbutrin SR - v2 e cig

Have taken:
Asacol - pentasa - levaquin - metronidazole - canasa - 6mp - effexor

NovaGal
Regular Member


Date Joined Mar 2011
Total Posts : 66
   Posted 4/20/2011 8:32 PM (GMT -7)   
From regular Asacol, I had frequent headaches and a lot of gas and bloating beyond what just the UC causes. Oh, and it didn't help me go into remission either :(.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 18083
   Posted 4/20/2011 11:52 PM (GMT -7)   
Yeah, it nearly killed me..within 4 hours of taking my very first dose of 4 pills, I broke out into a body rash from head to toe, with chills, fever, severe headache, nausea and sweats...severely allergic to it and all other sulfa meds used to treat IBD.
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~

suenew61
Regular Member


Date Joined Feb 2010
Total Posts : 103
   Posted 4/21/2011 12:04 AM (GMT -7)   
My daughter switched from pentasa to mesavantXL and developed pancreatitis. When she stopped taking mesavant it resolved, and when re-challenged her amylase started increasing again - so she cannot use any mesalazine drugs now.
A note of caution - her main symptoms were lack of appetite, increasing nausia, dull then increasing pain especially after eating towards the middle/left under her ribs.
Sue
Daughter(18) diagnosed severe pancolitis Nov 2009
Off all mesalazine following acute pancreatitis
6MP(25mg/day) SCD, Vitamin D, Homemade yoghurt
Multivitamin
FSC Ginger, Boswellia & Curcumin
Enerex CoQ10 (enteric with B6 and phosphatidylcholine)
Looking into non-IgE delayed allergy response

Duckstar
Regular Member


Date Joined Feb 2011
Total Posts : 37
   Posted 4/21/2011 7:06 AM (GMT -7)   
I don't think I have any side effects from the Asacol HD except my hair is falling out....lots and lots of it. I am also on Prednisone still so lots of weird side effects are from that as well. Once I am off the pred I am looking forward to not having the crazies and hopefully the Asacol HD will keep me feeling good!

I had surgery to fix a hiatal hernia about 3 1/2 years ago. My heartburn was SO bad. I NEVER get heartburn now but the surgery was not fun and was a long recovery. This was all before I was diagnosed with UC.
34 Year Old Female
Diagnosed Spring 2010, 6 months after birth of my baby boy
Currently:40 mg Pred, 6 Asacol HD/day, probiotic, iron sup, multi vit, no dairy, no raw veggies, gluten free, manuka honey 3-4 times daily

Hoping to taper pred soon...I am going CRAZY!

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2142
   Posted 4/21/2011 7:50 AM (GMT -7)   
I got kidney disease (minimal change disease) from taking sulfasalazine which is in the same family as the asacol. This is very rare.

There are possible side effects from any medicine, unfortunately its a roll of the dice or at least feels that way to me.
UC Pancolitis: dx'd 2000; First Remicade 4/26/11. Imuran 200mg 1xday. Prednisone 20mg 1xday. Kidney Disease (Minimal Change Disease): dx'd 2007 but believe I had it since 2000 from the sulfasalzine I was on (cannot take any 5ASA's). 20mg Lisinopril 1xday, Diovan 160mg 2xday, Lipitor 40mg 1xday, Calcium 1200mg 1xday, Vit D 400mg 1xday, Calcitriol .025mcg 1xday + Vit.

Serenity Now
Veteran Member


Date Joined Jan 2009
Total Posts : 1525
   Posted 4/21/2011 8:47 AM (GMT -7)   
I experienced intense joint pain. It was bad! I had hair loss too, but I don't think that was necessarily from the Asacol, I think it was a delayed effect of the flare itself.
Female, 44, Vancouver BC
Currently in remission

sfc425
Regular Member


Date Joined Jul 2010
Total Posts : 385
   Posted 4/21/2011 10:17 AM (GMT -7)   
Duckstar said...

I had surgery to fix a hiatal hernia about 3 1/2 years ago. My heartburn was SO bad. I NEVER get heartburn now but the surgery was not fun and was a long recovery. This was all before I was diagnosed with UC.


What exactly was the surgery and what did you need to do/what did they do to you?

Peace&Harmony
Veteran Member


Date Joined Jul 2010
Total Posts : 1121
   Posted 4/21/2011 10:40 AM (GMT -7)   
I got multiple side effects that left me bed ridden after 1 dose fo 4 pills (as prescribed).  Even after lowering the dose I had side effects from dry skin, bowels turned to dust, headaches.  I wa salso on Mesalamine enema so it may have been too much mesalamine in my system.
 
I'm now taking Apriso and doing better. Guess I needed time release.
41 year old female, diagnosed July 2010
flaring as of 10/15/2010,
Rectosigmoid up to 30 cm -mild
As of 2/2/2011 up to 15cm - mild to moderate - ulerative procitis
Apriso 4 pills AM/ Canasa 2x daily
Started LDN 3.0mg on 3/16/2011, increased to 4.5mg on 3/23/2011
Folic Acid 1 mg daily / Probotics /Energy Multi-Plex / Vital-Zymes Complete / BSP-201
Microgestin (birth control), Magnesium for leg cra

Duckstar
Regular Member


Date Joined Feb 2011
Total Posts : 37
   Posted 4/21/2011 3:21 PM (GMT -7)   
The surgery was laproscopic. They pulled my stomach back through the opening in the diaphram where it had pushed through(the hernia itself) and tightened the diaphram muscles around the esophogus using permanent stitches. They also wrapped part of the stomach around itself to make a new, tighter hiatal. This keeps the acids and everything in the stomach rather than leaking out and causing GERD. I saw a specialist...GI...that sent me for a barium x-ray and a swallow study. The swallow study showed how much muscle tone the entire esophugus had....I had no muscle tone at the hiatal...you could hear and feel gases and fluids going in and out of my stomach and esophugus. I would have had to be on drugs the rest of my life for the GERD and I did not want to be...ha ha to me since I now have UC and I am on more drugs...probably for life. Ugh! The recover was hard....no solids for over a week, pain in the area, no lifting for several weeks. I was teaching PK at the time and took the 2 weeks off at christmas to get the surgery. When I went back over 2 weeks after, I was still very fatigued and was not able to lift or do anything too strenuous. It was worth it though...I feel great in those regards (no heartburn....ever!) My mom has a hiatal hernia too and wants to have surgery. I saw on TV that thry do have a way to do it even less evasivly than mine. Do some research and you will be able to find it.
34 Year Old Female
Diagnosed Spring 2010, 6 months after birth of my baby boy
Currently:40 mg Pred, 6 Asacol HD/day, probiotic, iron sup, multi vit, no dairy, no raw veggies, gluten free, manuka honey 3-4 times daily

Hoping to taper pred soon...I am going CRAZY!

sfc425
Regular Member


Date Joined Jul 2010
Total Posts : 385
   Posted 4/21/2011 4:02 PM (GMT -7)   
Thanks for the info. I'm sorry that you have to deal with the UC after all that, but I'm glad your GERD issues are behind you.

I hope one day we can both feel completely healthy in both areas!

krm8
New Member


Date Joined Apr 2011
Total Posts : 16
   Posted 4/21/2011 10:21 PM (GMT -7)   
Hi sfc425,

I have had UC for about 20 years. I started with the Asacol and was on it for about a year and pretty much had a constant flare up the whole time. I got sick at one point and the Dr. said to stop all meds for a week. I felt so much better after that week off of meds and then went back on them. By the end of the first day the I was in pain and going to the bathroom constantly. I told the Dr. that I would not take the Asacol anymore. I have tried all of the meds in that category, cortizone enemas, 6MP (gave me pancreatites) methotrexate and a couple of other that I can't remember the names. Unfortunately, the prednisone is the drug I can take that works for me, but it does take a while. I am currently on my 4th month with my current flare up. My next step is Remicade. Just waiting for authorization from my insurance.

Take care and I hope the Asacol works for you.

sfc425
Regular Member


Date Joined Jul 2010
Total Posts : 385
   Posted 4/21/2011 11:21 PM (GMT -7)   
I'm real sorry to hear all of that. The Asacol does work for my UC, fortunately, but I think it also causes other discomfort within my body. I'm just trying to sort that out. I hope you feel better and the Remicade works out.
25 Year Old Male. Diagnosed with UC in early 2006. Remission soon after diagnosis with treatment of Asacol. Eventually symptoms went away until mid 2010. Currently dealing with minor flareup and taking Asacol HD. Also living with Hiatal Hernia and GERD.

Taking: 1600 mg Asacol HD (3X daily), Acidophilus probiotic (1X daily). Librax (2X daily) and Omeprazole (1X daily) for GERD.

WIMOMOFTHREE
Veteran Member


Date Joined Apr 2009
Total Posts : 654
   Posted 4/22/2011 6:55 AM (GMT -7)   
The first time I was on Asacol within a week I started getting a stiff neck and my wrists hurt, then I got nauesas, and pain in my abdomen. I stopped taking it and was put on lialda. Same thing happened. I tried asacol again before the big guns and what a mistake. I took four pills that day(I was on eight a day) and I started throwing up violently and I had such sharp pains in my abdomen. It took three days to feel better. I'm allergic to all 5 asa's and 6mp(the same thing happened).
On remicade since July 2009, Upped my dose in August 2010 to 7.5kg
Currently taking:Calcium Citrate, Vitamin D and Vitamin B12 shot(monthly, myself), Zinc, Magnesium, Zyrtex, Prilosec, Fish Oil, Levothyroxine, and a Multi Chewable Vitamin
Had a scope on 1-11 and my left side is completely healed and my right side has some mild inflammation and ulcers. The remi is working!!!!!

WIMOMOFTHREE
Veteran Member


Date Joined Apr 2009
Total Posts : 654
   Posted 4/22/2011 6:56 AM (GMT -7)   
I forgot to add I also got major D with it. Like 30 times a day(I was only going 10-15 before that). redface
On remicade since July 2009, Upped my dose in August 2010 to 7.5kg
Currently taking:Calcium Citrate, Vitamin D and Vitamin B12 shot(monthly, myself), Zinc, Magnesium, Zyrtex, Prilosec, Fish Oil, Levothyroxine, and a Multi Chewable Vitamin
Had a scope on 1-11 and my left side is completely healed and my right side has some mild inflammation and ulcers. The remi is working!!!!!

UC Frustration
New Member


Date Joined May 2011
Total Posts : 7
   Posted 6/17/2011 10:06 PM (GMT -7)   
Did anyone have any body odor changes with Asacol? Mine has changed all around, not in a good way either! I looked it up and I guess it is a side effect but I have not heard of anyone else having this side effect. I am not happy about it at all and wondering if anyone else has a suggestion to a better deodorant that would help or body wash.
Kate
Diagnosed 5/17/2011
Currently taking: Asacol 400mg x 2, 3 times daily, Zantac 75, Zoloft 50mg, Fish oil, and Multivitamin.
Mesalamine Enema 60ml 1 time nightly only when flares start.

deuce1024
Regular Member


Date Joined May 2011
Total Posts : 36
   Posted 6/18/2011 6:40 AM (GMT -7)   
I switched from Lialda back to Asacol now and am taking 5 of the 800mg HD tabs daily with no trouble at all.
UC Frustration, As far as changes in body smell, the hot weather does that to me due to sweating, but I use a good deodarant soap like Irish spring or coast and they seem to work well for me. I see you take fish oil also, that may be a source of problem also. I take 1200mg daily fish oil pills and some days I swear they make odor worse when sweating.
Current Meds:
Asacol 800mg 5/day
Rowasa (mesalamine) 4g/60ml at night

Previous Meds:
Lialda 3.2g/day
canasa
Prednisone
Hydrocortisone Enema (didn't help much)

UC Frustration
New Member


Date Joined May 2011
Total Posts : 7
   Posted 6/19/2011 8:02 PM (GMT -7)   
I have been taking fish oil for years, with no change. I am actually switching to Lialda because I get help from the manufacturer unlike Asacol where I can get no help. Without insurance I can't keep paying so much a month for Asacol. Why did you switch from Lialda back to Asacol? Just curious. As for the odor, it's my whole body not just sweat. I'm not sure what else I can do about it. I will figure something out.
Kate
Diagnosed 5/17/2011
Currently taking: Asacol 400mg x 2, 3 times daily, Zantac 75, Zoloft 50mg, Fish oil, and Multivitamin.
Mesalamine Enema 60ml 1 time nightly only when flares start.

tlhall
Regular Member


Date Joined Dec 2010
Total Posts : 138
   Posted 6/20/2011 9:11 AM (GMT -7)   
I've developed tinnitus since I started taking 5-asa meds. I switched from Lialda to Asacol HD with no change in the noise.

It's been a few months now, and most of the time I don't even notice the noise.
55 yo female
Diagnosed with Pancolitis 11/04/10
Remission January 2011
Lialda 3.6g (caused Tinnitus)
Asacol 2-800mg 2xday 2400mg/day
Canasa 1xday

ScienceGirl
Veteran Member


Date Joined Oct 2012
Total Posts : 511
   Posted 7/2/2013 12:19 PM (GMT -7)   
UC Frustration: I noticed a change in my body odor when I turned 25, unrelated to UC. Not saying yours isn't UC related. I wasn't on any meds at the time.

tlhall: THAT is the one side effect I got from Asacol. The first time I was on it, when I was 21, I had tinnitus for 3 days straight at the highest dosage, so I dropped the dosage. When I was on 4.8g/day of Asacol HD, I would get earaches in my right ear, and it would feel/sound as if I had water in my ear. My doctor kept telling me it wasn't related, but as soon as I dropped the dosage to 3.2g/day, it went away. MYSTERIOUS.
26yo female
Diagnosed with moderate pancolitic UC 10/07, severe 2/13
Flares: 8/07-12/07, 7/10-1/11, 2/12-ongoing
Currently taking: 6MP (75mg/day), Remicade (10mg/kg every 6 weeks), hydrocortisone enemas (nightly, short-term)

PoopSleuth
New Member


Date Joined Jun 2013
Total Posts : 11
   Posted 7/2/2013 9:34 PM (GMT -7)   
Have not made the switch yet from regular 400mg Asacol to HD version, though I believe that will happen in the near future with the discontinuation of regular Asacol, so I follow the HD-related posts with great interest.

I, too, have gotten tinnitus on higher doses of Asacol (at 4.8g, and it remained when I dropped to 3.6g/day). It went away when I went back down to 2.4g/d, though I still get a super-brief (3 seconds or so) shot of ringing in my left ear every now and then and I'm sure it's still related to the drug.

Otherwise seem to be doing okay on it after 16 years... Knock on wood.

Is there any reason to believe the HD version (800mg) of the drug is any different than taking two 400mg pills at one time?
40, F, UC dx Jul 1997
Current: mild flare started May '13 - flex-sig 6/18 confirmed UP - now using Canasa supp's 1000mg x 2 daily, Asacol 800mg x 3 daily, trying diet mod
Last flare: May-Oct '12 – prednisone Jul ‘12-Feb ‘13 (now steroid-dependent – was my 3rd course of pred since ‘99), Imuran Sep ‘12-Jan ’13 (quit re: hair loss)
Previous normal maintenance when in remission: Asacol 800mg x 3 daily

aguywithuc
Veteran Member


Date Joined Jun 2010
Total Posts : 2548
   Posted 12/18/2013 4:55 AM (GMT -7)   
Self-Pay labs for nearly 2 months accidentally showed ASACOL HD plunging my platelet count from near 700 to 400 and Neutrophil ranks swelled to 14 instead of max 4 and per Japan they are programmed to attack the gut, dropped to 7 as did WBC. Now there was a bounce in following weeks after and trend down going back up about 50% and falling over again.

Today they were all back at bottom, platelet 407 is just points from in-range. KEY metric due to UC related sagittal sinus thrombosis 2010 and lost ulnar artery 2013.

Not only did ASACOL HD feel good and no urgency all day out with daughter and grand parents but I had the labs to back it up. Never before has a pharmaceutical maint med worked for me.

Also wheatgrass+pseed powder+intestinew
Qing Dai from developing Chinese province
NAC
Green Tea
RS Diet ( Navy beans hot with butter, Slender Sticks Fruit punch with RS2 )
40 drumsticks Whole Foods catering per week
Meatballs Whole Foods
Oats-n-whey
Bryers chocolate ice cream NO LACTOSE


Entire protocol is working, lifting weights and put on 15 lbs. Time to rapidly taper off pred. Flare was so bad that painful BM's result in body wanting to vomit and mouth would rush like a river as I mentally staved off what likely was going to end in dry heaves.

Had 8 interviews so allowed pred to remain high but time to eliminate it I have NO INFLAMMATION C-Reactive Protein scored low today confirming how I feel.

Post Edited (aguywithuc) : 12/18/2013 4:00:57 AM (GMT-7)

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