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In the 1 percent of people with allergic reaction with mesalamine

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Posted 7/18/2008 2:56 AM (GMT 0)

Hello,

My name is Catherine. I am 25 years old and was recently diagnosed with UC.  Eversince January of this year I've noticed a little bit of blood when going to the bathroom.  That was about it though.  I was diagnosed with Celiac Disease about 3 years ago, and that happened when I had that, so I thought nothing about it.  As time went on I noticed I had more cramping, as well as more blood, I lost weight ( I was at 105 lbs.) now I weigh 90.  I got down to 87 lbs though.  I finally went to my GI doctor after working a physical full-time new job, and just got insurance so I was able to be checked out. After having a sigmodoscopy, it turned out he said I had UC.  Then he prescribed me Asacol.  I took 12 pills a day of that plus 2 holding Rowasa enemas.  I took it for about a month, but between that I was so dehydrated and depleted of fluids, I went to the hospital.  I also was having low-grade fevers for the longest time.  I spent a week at the hospital, and they did another sigmodoscopy and he said the UC got better.  I was released after getting my fluids and electrolytes back to normal.  That same night at home I developed a 103 degree fever, night sweats, and chest pain.  I thought I was dying.  I went back to the hospital the next day and they thought I either had meningitis or pneumonia.  They almost did a spinal tap on me, but they didn't.  That night at the hospital they immediately put me on 2 antibiotics, just to be sure if I had anything it would dissappear in time.  I was admitted, and basically to make a very long story short, they gave me 2 pints of blood, oxygen, Dilaudid, insulin, shots in my belly everyday for bloodclots, fluids (which I gained 20 lbs. of fluid in my legs, arms, stomach and ankles), then Lasix, Predisone, numerous chest x-rays and CT scans of abdomen and chest, EKG's , as well as a Pic line ( tube feeding) in my arm.   My blood pressure got down to 74 over 39, my pulse rate was 160.  I am basically traumitized from this whole experience, was in terrible pain and spent 3 weeks in the hospital.  I just got out not too long ago.  I had a cardiologist, an infectious disease specialist, a hospitalist, and a lung doctor.  Out of all them, they still didn't figure out what was wrong with me until they called a University hospital and asked what was up.  They noticed on the EKG that I had a rub, or pericardis, fluid around my heart.  They finally said I was one in a million who had a toxic allergic reaction to mesalamine.  I am scared now because eventhough I'm off the Asacol and Rowasa now, my GI doctor doesn't know what to do in the next few months because eventhough I'm on Predisone now, he want's to get me off that, and don't know what else to use.  I still have chest pains now and am terrified that I will have long-lasting damage to my heart, lungs, kidneys, and whatever else the mesalamine could do to me.  Did this kinda thing happen to anyone else?  I just feel so scared and alone, and depressed and anxious about all this.  I have insomnia too.  Right now I'm on:  Predisone, nexium, 3 iron pills a day, Paxil, and Atavin for my nerves.  I could have died from this drug, and now I feel like whenever I take any drug, I could potentially have  side-effects. 

Posted 7/18/2008 3:47 AM (GMT 0)
Sorry you had such a tuff time of it, I have never had a reaction to the asacol, but I am allergic to several different meds,and it is something u dont no till you take it. any drug you have never taken before you stand the chance of being allergic, we all do. mine has never been that bad but I have had to go to the hospital a couple of times with the tung swelling and the throat swelling shut it can be very scary. I dread every time I have to take a new pill not knowing so I know how u feel. hope u feel better soon
Posted 7/18/2008 4:38 AM (GMT 0)
It's terrible that it took so long for them to figure out it was an allergic reaction. I'm glad you lived to tell the tale! Simply being in the hospital for 3 weeks IS enough to traumatize you. I spent 10 days in the hospital for UC in May and feel it traumatized me, anxiety and depression on top of the physical stuff. If you were on relatively high doses of prednisone you will need to taper down slowly. Hopefully your GI doc will have some ideas of a med for you to try as you come off the prednisone. If not, maybe consult with a different GI too. Welcome to the forum, pretty much everyone here has had bad experiences from UC and/or medications. I've found this to be a great place to share info and to know that I'm not the only one struggling with all of this. And sometimes people post good news too, sometimes I need reminders of the good stuff. Hang in there!
Posted 7/18/2008 12:37 PM (GMT 0)
I remember at least one other person on the crohns board had an allergic reaction to a 5-ASA drug. I'll put a link to your post over there!
Posted 7/18/2008 12:56 PM (GMT 0)

Hi Hon,

 

I am so sorry you had to go through all of this...

I too had a major problem with Asacol!

For years my GI told me that it was not a reaction or allergy to the drug but an exaserbation of my disease, which seems to be a common conclusion by GIs (I read many stories online)

I was eventually poisoned because my poor pancreas was effected ( seems the new lit from the Lialda corp lists pancreas enzymes increase 3x means trouble)

To make a very long story short, while I was in the hospital fighting back from the initial drug problem, then systemic infection and then total poisoning from Levaquin, I finally called my GI in and told him to watch what I did next...He would never believe me that these drugs were doing more damage so I felt the need to show him...I took the 2 asacol and within minutes my gut swelled further and out they came, all over the bed...He told the nurse, list 'allergy to Asacol'.

Only took 12 years to get his attention, meantime how much damage did I do to my body?

BTW, the new lit says 3% have this reaction and should never take mesalamine again...Funny, my new GI just gave me a sample of Lialda, I took it home, read it, made some notes on the pamphlet and handed it back to him yesterday...He threw them away saying he didn't know how bad they could be for some...I am teaching him how not to poison his patients tongue

I have been med free for many of these years I have had UC and so-called Crohn's, of which I think I have neither...I have cleaned up my diet and am forced to take Ativan for the Levaquin reaction that did permanent damageplus all the stress being hospitalized THREE times cause of these creeps and I recently began LDN, which I believe will be the answer for me in the long run...I have more to learn about what is actually causing this inflammation but I am no quitter...I am no longer open to drugs and refuse to go back to being that sick again under any doctors 'care'...I have taken back full control and am doing much better that I ever have under anyones care...I even had to spend the past 19 months fighting back from the levaquin/solumedrol disaster but at least I am alive...I so blame all these doctors for what they have done to me with their so-called expertise and their huge egos...Will never trust them again...But my new GI is sympathetic and is willing to help me any way he can...He ordered the LDN for me, no question...I like him!

This experience has changed my life completely...I uncovered what docs and hospitals do to increase their bottom line and I was only one victim...I was done wrong and eventually everyone will know about what happens when your docs and pharma put profit before a persons well-being...Its happening every day, everywhere...I hope you can recover from the 'damage' , physical and mental and being to heal...It has taken me 19 months and I have told by people that know exactly what happened to me and weren't part of the cover-up, that I am lucky to be alive, never mind walking again...I somehow found the will to live and have a husband who knew more than he should and saved me from certain death from drugs that I shouldn't have had for an illness I likely never had...

Do your research, keep daily journals that include foods you eat...Get some food allergy testing done if you believe there is a connection there (Sage Labs did mine and gave me excellent info) also have the CDSA by Genova which is stool testing that can detect digestive issues your GI will never consider...I just received mine (my new PCP ordered them and was shocked to find my old GI would never consider them) they are also very informative...I have been able to narrow down cause and effect and no longer feel that I have a forever disease with no known cause or cure and that diet is not contributory...It's all hogwash and these doctors and big Pharma should all be thrown in the river...

Be your own best advocate and find out what is going wrong in your body and try to fix it 'naturally'...My downfall was listening to my GI, pumping pills into my poor body and poisoning myself while he stood by and made money...Since I have left these docs behind, my new docs feel I am def onto something and are supporting my decisions to 'heal my body'...It's quite an undertaking, leaving no time for much else but research and nutritional requirements which can be time consuming and costly...I would rather spend my $$$$$ on good food and supps than give it to all those creeps...Oh, did I forget to tell you this...My GI once said to me I would be dead in a year without Remicade...I was barely able to walk out of the hospital after the last sig(which began the systemic infection) when he blurted this out pointing a finger at me...I have never returned...I currently am doing well on LDN and am still being treated for severe PTSD from what they did to me, but I will get there someday...

Sorry this got long winded, I know I said I would make it short but that doesn't seem to work when you have been near death and had to fight for your life at the hands of these monsters...If they don't know what a reaction looks like, they should go back to school...Meantime, they should decline the dinner invitations and all the other goodies from the drug reps and concentrate on helping the patient get well...

PS. Look into your diet, may reveal some info you weren't expecting...

Good Luck Hon...Let us know how you are progressing...

Peace~MamaDove

Posted 7/18/2008 1:37 PM (GMT 0)
This is an excellent example of why we really should do our homework on any medication we're given. Read the information the pharmacy gives you, Google the drug and read about it. Some docs get lazy and rely on pharmaceutical reps for their drug information. The manufacturer is touting Lialda as a "new" medication, when it's really only a new delivery form of an old one. If you have an adverse reaction to Asacol, there's an excellent chance you'll also have trouble with Lialda. Good on you for doing your research!

There are a bajillion medications available these days and all of them can have good and/or bad effects. I think at least half of them have been introduced in the past ten years! Rather than relying on the docs to remember all the details about them, it's important to be a partner in your care and check them out yourself.
Posted 7/18/2008 4:31 PM (GMT 0)
I too had a sever reaction to asacol.  My dr just htought i had the flue but i knew it was a reaction.  Fever, chills, terrible shaking, and bad liver readings.  I finally stopped taking it and they were very apologetic.  I only trust myself now

Posted 7/18/2008 4:34 PM (GMT 0)
Sorry for the horror you went through...I'm severely allergic to asacol (5-ASA) a couple of hours after taking just one dose of 4 pills I broke out into a severe full body rash with nausea, chills, fever and sweats which I reported to my GI on the phone and he said to discontinue taking the asacol because I'm obviously severely allergic...at that time (17 yrs ago) I had to pretty much rely on prednisone which over time lost it's affectiveness bringing me to now doing the alternative route (natural anti-inflammatories) with some success.

:)
Posted 7/18/2008 4:49 PM (GMT 0)
I'm so sorry you had to go through that. I too am allergic to mesalamine. Asacol, Lialda and Colazal exacerbated my symptoms terribly and made me feel extremely ill. My GI wanted me to go on steroids next, I said no thanks! I'm trying to treat my UC naturally, I don't really trust the GI that just wants to push expensive pills down my throat.
Posted 7/18/2008 9:50 PM (GMT 0)

Hi Catherine

 My 2yr old son has UC he was on Canasa and his GI took him off that and put him on Sulfasalyzine 3 times a day because his flare ups weren't under control. After his first 2 doses he started with 101 fever the next day it shot up to 103 he just lais in bed wouldn't eat or drink. his heart was racing he looked awful day 4 his fever was 106 his heart rate was 200 they rushed him into the ER they said he was dehydrated. The ER dr's first didn't belive his diagnosis they said he was to young until they spoke with his Ped. They ran tons of blood work and gave him IV fluids they said he had a bug they never called his GI who is in another town 2 hrs away I called from my cell phone 6 hrs later and it wasn't til then that the GI dr told me he was having a reaction to the Sulfa in the med at that point they already gave him a dose of Zithromax because his white blood cell count was elevated due to the reaction. They continued the IV push and by the next day the fever was down and he perked up but his GI dr wants his heart checked because of that reaction. Now any med we discuss I research as throughly as I can. Our pharmacy is wonderful with answering any questions I have.

Posted 7/18/2008 11:21 PM (GMT 0)
Wow, Catherine, so sorry for what you have had to deal with!

I did not have a dramatic scary experience as you did, but I did eventually figure out that Asacol, Lialda, Canasa and the Rowasa enemas were exacerbating my symptoms.

Just prior to a 14 day hospitalization, I was taken off all meds, and was put on Prednisone and then started Remicade during my inpatient stay. I had a great initial reaction to the Remicade, but unfortunately had an allergic reaction after a few infusions. I have now been having success with Humira, however I am able to get it due to my Crohn's-Colitis diagnosis.

Wishing you luck -- there are other meds out there!
Posted 7/19/2008 8:24 PM (GMT 0)
Catherine -

I am so sorry to hear about all the suffering you had to go through. I'm allergic to Asacol also, but my reaction was not enough close to being as dramatic as yours. Matter of fact, it took two years to figure out about my allergy. I was originally diagnosed with mild UC after I had a persistent clostridium difficile infection. I've done a lot of moving around since then, so I haven't had a consistent doc since my original diagnosis, so no one was really tracking my progress except me. Ever since my diagnosis, I'd been feeling run down, and physically exhausted. Prior to the dx of UC I had very physically active, and the exhaustion basically immobilized me. My quality of life went down the tubes. One day it occurred to me that I had been showing symptoms of mild UC for years prior to the diagnosis, but I hadn't felt as crappy as I was. I started thinking about things, did a little research, and decided that maybe it was the Asacol that was causing my malaise. So I started tapering myself off of it.

I finally settled down in Denver, been here almost a year, and found an excellent GI doc. He spent a great deal of time talking with me about my symptoms, and he wanted to run some blood tests. Sure enough, my blood work showed an abnormally high amount of an antibody related to allergies. So he told me to accelerate my tapering off the Asacol. I took my final dose last Wednesday. By Friday, it felt like a fog had been lifted from my brain, and my body felt energized. Of course, now my doc and I have to decide what to do about my UC symptoms (I've taken steroids before, and won't do it again), but I'll take my bloody stools over the exhaustion any day of the week.

I am not advocating anyone stopping their meds without a doc's advice, but in truth each one of us knows our body better than any doctor could ever hope to. As Judy said, it is very important for us to understand our meds and to keep our docs informed of how we are affected by them. I hope that you and your physician can find a viable alternative to the Asacol and it's cousins. Good luck.
Posted 7/19/2008 8:59 PM (GMT 0)
here's a nother one with an intolerance to mesamaline/sulfazaline.

I was able to handle it just fine for the first few years of my UC-life, but then I changed my diet and lifestyle habits to something a bit more healthy, and all of the sudden I would become violently ill whenever I took generic colozal. weird, eh? That led to the doc's trying various things with my maintenance meds dosage, and it seems I did better, UCwise, with NO sulfazaline at all.

intolerance symptoms for me:

vomiting, nausea, headaches, really bad shivers, cold/hot flashes, fatigue, plus all the lower GI stuff that comes with UC (cramps, etc)-- while UC itself would sometimes cause all of the above, it was usually only when I was REALLY sick. Mesalamine was basically mimicing drastic UC symptoms. The only giveaway that I wasnt in a flare was that my urine and poo and vomit were all toxic yellow--like the color of highlighter. It was bizarre. Luckily the doc saw that as a giveaway symptom, and we tried playing with my dosage before resorting to flare-up-treatments.
Posted 7/22/2008 7:49 PM (GMT 0)
Catherine I was just curious how you've been doing?
Posted 7/22/2008 8:57 PM (GMT 0)
Hi Catherine! Welcome to Healingwell :) We're sorry you had to find us, but glad you did.

I'm also curious to how you are feeling!

What a miserable experience. I'm so sorry you had to go through that!

How was your celiac disease dx'd? My father and a friend's son are also celiacs. I'm so glad that there are more options on the food market now. When my dad was dx'd there were very few items around and things weren't labelled as GF - my mom spent hours reading labels and researching online.

Good luck!
Posted 7/22/2008 9:12 PM (GMT 0)
Hi Catherine. I'm also a new member. My reaction to mesalimine wasn't as bad, but my dr. kept trying me on the different 5-asa type medications, and all of them made me feel a lot worse than I did before. I just stopped taking Lialda(which has mesalimine) cuz it made me vomit, gave me horrible abdominal pains, and I felt like my heart was gonna come out of my chest. Before that though.. I tried everyone one of them. It took two years of different medication before I finally hit on some of the immuno-suppressant drugs like azathioprine. I have to get blood tested with those, but I just wanted to respond, becuase I too am one of the few that is completely intolerant to those drugs. I'm mad at myself for letting my doc talk me into trying Lialda. I went from very mild symptoms, to having to take 50mg of preds a day to reverse what Lialda did to me. Hope you're doing better and are able to find something that works for you.
Posted 7/23/2008 12:02 AM (GMT 0)
Hi Catherine, I'm pretty new here as well--so sorry to hear your story, but like others have said, at least you are alive.

I was put on 12 Asacol/day last month. SInce then, my liver and pancreas enzymes have risen to about 3 times the upper limit of normal. My doctor asked for an ultrasound to check out my liver and pancreas, so I'm getting that next week. Things is, I feel good. But I really don't want to hurt my body. I just need to find out if this is okay or if I need a different medication.

Anyway, this board is fantastic and full of extremely knowledgeable and helpful people. Welcome!

 

Posted 7/23/2008 12:49 AM (GMT 0)
Hi rocal,

I have been doing a abit better lately. I'm sorry I haven't replied to anyone much on here lately. I have to start half-days of work tomorrow, which I'm nervous about because I'm still light-headed, dizzy and blurred vision at times. I am a custodian for a school and I work with my dad, but I need to go to work because of the inusrance. If I can't do it for some reason, I can leave, but I need to atleast try it, or I'll never get ready for when the kids go back to school. I've decreased the predisone to 20mg this past week, and in a few days I will decrease it to 15mg. I'm still on all the other meds too, including the Paxil. I still get nauseus, but don't know if it's mainly anxiety driven feelings. ( I have a phobia about throwing up), lol. I know it's strange. I even have a drug for anti-nausea just incase. I still don't get much sleep, even taking ambiens 5 mg dose, and a half of a 1 mg Ativan. I've been trying to get out with my boyfriend, I try and walk around at stores, but sometimes I get so dizzy. I think it's anxiety, but probably from predisone too... my doctor looked in my eyes the one day and said the predisone can swell parts of your body, like the lenses. I hope that goes away. I also have some chest pains too at times, although I think about it constantly too, so it could be part anxiety. Sometimes I lay down at night and feel my heart fluttering, like when I was in the hospital, but the cardiologist I saw in there told me i had nothing to worry about. (I will tell my doctor when I see him again about it), I go to my GI doc on August 5th. That's the last day on my dose of predisone. I'm just really scared and scarred by the experience, I don't know what he'll put me on. He told me when I seen him last (a couple weeks ago ) that he didn't know what he'll do for meds for me. That scares me when a doctor isn't sure. You think you can trust them. I would love to prehaps be on no meds for awhile and go for the whole homeopathic approach. I just still don't feel like the same old me, but atleast my UC is in remission. I just don't know after getting off predisone, when the symptoms will strike up again.

Sorry this is so long
Posted 7/23/2008 12:56 AM (GMT 0)
Hi dakotagirl,

They found out about my celiac disease back in 2006. I was having some blood in my stools, and some cramping/gas, pains ( sorta like this UC stuff) but it wasn't as bad, and not much blood. I went to the GI doctor and he did a colonoscopy as well as an endoscopy, when they put the tube down your throat ( I HATED that ), bad gag reflex, even when they put me under local anestesia. I guess when I was under, I noticed the tube down my throat because I have a wierd twist in my stomach, and I felt them in there, and I pulled the tube out. They did it again, but in the hospital where they put me under general anestesia. They also did a blood test for the celiac sprue count. They then diagnosed me within a couple weeks when the biopsy came back. I was fine with that, all you have to do to maintain being health with celiac disease is if you avoid all wheat, rye, and barley. It was hard at first, but I deal with it. And the best part of celiac is that you don't ever take meds for it!
Posted 7/23/2008 12:59 AM (GMT 0)
I wanted to just say thank you to everyone who has read my posts and replied to it. Everyone is so kind and thoughtful to write and make me feel like I'm not the only one suffering out there. It's theraputic to belong to a group who's dealing with the same thing. Thanks everyone for all the support : )
Posted 7/26/2008 3:47 AM (GMT 0)
Hello everyone,

I just wanted to say that I've been doing a bit better.  I still can't sleep though at night (even with taking a 5mg. dose of Ambien some nights) as well as a half  an Ativan.  Sometimes I'll just take the Ativan.  I'm still on the predisone 15 mg. now, tapering down next week, also recently on the Paxil 20mg.  Maybe it's from the drugs that I'm not sleeping, as well as just being anxious in general.  I also feel jittery at times, throughout the day.  Sometimes I feel like I'm jumping out of my skin... this morning I felt that way but was feeling exhausted at the same time.  Also, the predisone has given me terrible acne.  I still feel my heart racing at times, especially when I lay down, but when I see my GI doc on Aug. 5th, I'll let him know about it.  I''m really anxious about seeing him, because he said he doesn't know what to put me on.  I work at a school, and if he wants me to get on immune suppressant drugs, I will be sick all the time!  I really want to just try a holistic approach.  Does anyone have have any experiences with anything natural that works?  I've seen stuff about the probiotics, I guess the only way I would know is if I try it. 

 

Posted 7/26/2008 11:14 AM (GMT 0)
Hi Catherine:)


I am new to this forum. I am sorry you are having such a horrible time right now. And I am certainly sorry about your experience in the hospital. I was hospitalized for 6 days back in March because of my proctitis and the IV steriods ALONE drove me nuts.

Since you just started out on paxil, that can be the reason for your insomnia as well. Are you taking it in the morning? I took paxil for many years - years ago. It also can cause nausea and jitters. This will GO AWAY in time. Usually takes about 4-6 weeks for everything to settle down.

The Ativan should help.

I am also weening from prednisone right now....down to 30mgs as of Wednesday and just praying the bleeding and mucus stays away!

Have you looked into a gluten free diet since you were diag. with Celiac? I am sure you have.

I wish you the best!

Posted 7/28/2008 5:16 AM (GMT 0)
Hi WishfulMA,

Thank you for replying and caring. I'm sorry you went through your situation as well. It's totally not fun. Yes, I take the Paxil in the mornings. I hope to feel better on it soon. I'm alittle nervous about the Ativan though... I read that you could have withrdrawl symptoms if you've taken it for awhile, even for a week. Since I feel PTSD with prescription drugs alone, with what happened to me recently, I don't want that to happen too! I guess you have to sorta taper off that? So I've been taking Ativan's 1/2 mg. every other night to try to help me sleep. The Ambien I have does nothing. I just wish I was back to myself once again, eventhough it will take time. I was REALLY sick there for awhile. Yes I've been sticking to the GF diet for a few years now, eversince I've been diagnosed. Although I do have to say the food is quite more expensive. about 7 dollars for a little GF pizza.... 5 dollars for a little box of cookies, 2-3 dollars for a little thing of GF rice pasta. It all adds up, so it's not as easy as buying cheaper foods. I'll live with it though, it's not terrible, unless I eat bad foods for me, then I would feel like crap.

I hope you feel better soon with your flare
Posted 7/28/2008 5:26 AM (GMT 0)
Hi Rona,

I'm sorry to not reply before. Thank you for reading my post and replying. It was a scary experience, and I hope to not relive it. Medications can be so scary if you have a bad reaction to them.. and you don't know that until it happens. You can't predict it. I'm still a bit skeptical about my pills I take now for stuff, but I just have to trust that everything will be ok.
Posted 7/28/2008 5:31 AM (GMT 0)
Hi Piper_chris,

Thank you for reading and responding to my story. Yeah, I'm glad to be alive. I found out a few days ago from my mom (who was there with me in the hospital) that the doctors were saying that I was finally becoming "stable". I guess since my blood pressure was so low and my heart rate was so high, I was in bad shape. I don't remember a bit of what happened to me since I was doped up, but that's scary to hear that now! I'm sorry to hear about your experience back in May. I hope you're feeling better.
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