Asacol 800 allergy or UC flare up?

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WorrywartNana
Regular Member


Date Joined Dec 2008
Total Posts : 86
   Posted 3/21/2009 11:27 PM (GMT -6)   
Can anyone tell me the difference between an Asacol 800 "allergy" and a UC "flare up"?
 
My g'son had started Asacol 800 x 6 a few weeks ago (had just finished his Prednisone) - and by this past Thurs. he was quite ill.
 
His symptoms were/are:  ulcers in the throat/mouth, increased diahrrea with blood, achey joints/jaw/teeth (basically, hurts all over!), severe acne (more like boils!), upset stomach, really bad head aches and "red" whites of the eyes (totally bloodshot!).
 
He saw his Specialist Thurs. who said he was having an Asacol 800 "allergic" reation (his throat was just red, at that point in time).  Specialist took him off Asacol, said to come back in 3 weeks.    Today his throat and mouth are ulcerated, and his symptoms are worse.  He is on "no" medications at this time.  No doc's on call till Mon.
 
Anyone been at this stage?
 
 
 
G'son diagnosed December 2008 with moderate to severe UC - just finished Prednisone 40mg; now on Asacol 800 x 6; Didrocal 90 dys; multivitamins; probiotics; boost; flaxseed. 


Southernbelle
Regular Member


Date Joined Feb 2009
Total Posts : 33
   Posted 3/22/2009 8:06 AM (GMT -6)   
Hi Nana..I'm so sorry to hear he's so sick on top of all the UC .Sounds very similar to what I experienced. I can't do any of the masalimine meds. Not even the enemas. Within a few weeks enough of it gets in my blood that the mouth ulcers start coming back. Before I figured out that it was the asacol I had 13 of the side effects. The urgent care dr actually thought I had staph because of the boils and LARGE acne type bumps that started spreading up my legs. Fortunately tested negative. Red eyes that looked like pinkeye. Sore joints, fever...the whole thing. There are several more here who have experienced similar things. Took about 10 days for things to get good enough to where I could go back to work. It just takes a while to get it out of the system. How old is he? It's so hard to watch someone you love go through such pain. You just feel so helpless. I hope he gets better soon.
58/F/Hairdresser
Dx leftsided UC July 08.Can't handle any masalamine or 6-MP
Been on steroids twice. Do well on those.
Suppliments: Aloe MPS, probiotics, enzymes, C and E, Curcumin,CoQ10,Grapeseed extract, Selenium, Cal.-Mag w/D, Multi., Vit.E enemas, Three-lac
Meds: mild blood pressure. Prilosec, Wellbutrin, steroid suppositories
 
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/22/2009 8:26 AM (GMT -6)   

All mesalamines give me flu-like symptoms - nausea, sweating, dizzy, general unwell.  Not as bad as his but bad enough to know I can't take them.  Took several and got the symptoms like on the 5th day or soon thereafter. 

Southernbelle - what reaction did you get to 6-MP.  I have been on it three weeks and all seems ok - should I be looking for symtpoms?

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008  Cannot tolerate mesalamines, Canasa, etc. Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred.
Started on prednisone Feb.7, 2009 - tapering to 20 mg. for two more weeks and then down to 15 mg.etc.  Added 6-MP Feb. 28.
Added Anusol suppositories - March 16 - see doc in 3 months. 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


Southernbelle
Regular Member


Date Joined Feb 2009
Total Posts : 33
   Posted 3/22/2009 8:41 AM (GMT -6)   
First of all I was just plain scared to take it since it surpresses the immune system but I told the DR I would research it before I made my decision. There were three things I found that I would not put up with...Fatigue, mouth ulcers and hair loss. Before a month was up my hair started falling out by the handfulls!!Being a hairdresser I just couldn't deal! Plus my symptoms were already somewhat under control so I told the Doc that if the side effects are worse than the symptoms I'm dealing with it's just not worth it to me.
58/F/Hairdresser
Dx leftsided UC July 08.Can't handle any masalamine or 6-MP
Been on steroids twice. Do well on those.
Suppliments: Aloe MPS, probiotics, enzymes, C and E, Curcumin,CoQ10,Grapeseed extract, Selenium, Cal.-Mag w/D, Multi., Vit.E enemas, Three-lac
Meds: mild blood pressure. Prilosec, Wellbutrin, steroid suppositories
 
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/22/2009 9:12 AM (GMT -6)   

Exactly what I said to doctor!!  That is why I will not/cannot try mesalamines anymore.  I am hoping if I have to raise doseage of 6MP that all those symptoms don't appear.  I have very white hair, short and so far looks like it is not getting any thinner.  Mesalamines made me feel a LOT worse than UC - no sense going there!  I finally convinced my NP and then the doctor that I could not just "suffer through" the side effects.  YIKES - I am 68 and just don't need that.  There has to be other ways which of course ended up with prednisone!  At least I can do my everyday stuff taking it - could hardly get out of bed with Lialda, Coloazal and the enemas.

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008  Cannot tolerate mesalamines, Canasa, etc. Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred.
Started on prednisone Feb.7, 2009 - tapering to 20 mg. for two more weeks and then down to 15 mg.etc.  Added 6-MP Feb. 28.
Added Anusol suppositories - March 16 - see doc in 3 months. 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


WorrywartNana
Regular Member


Date Joined Dec 2008
Total Posts : 86
   Posted 3/22/2009 12:20 PM (GMT -6)   
Thank you Southernbelle and Kops2da for responding to my post so quickly.
 
Southernbelle:  He is 19, still living at home and yes, it kills me to see anyone suffer, especially one of my own!   What you described is exactly what I was thinking...   strep throat, staph infection and God knows what else!
 
I have a million more questions to ask, hope you can answer some of them.
 
Did your urgent care doctor prescribe antibiotics or put you back on Prednisone to get the Asacol "allergy" symptoms under controll?
 
My g'son's Specialist took him off both Asacol and Didrocal...  told him to go without any meds for 3 weeks.   Won't his mouth/throat ulcers get worse?  the acne (boils?) get worse?  It's like his system is totally toxic!  Do you get worse for 10 days and then start improving without any meds? 
 
If just left without any meds to counteract this allergy, won't the ulcers do damage to his digestive system?  And now that Prednisone has stopped him from producing whatever it is that makes your immune system kick in, won't the inflamation get worse and possibly lead to complications like infections, etc?
 
Like you, my g'son was very concerned about going on Prednisone to start with because of all the bad side effects to this drug.   We have a bone disorder in our family already and to put Prednisone on top of it was a very hard decision...   that was why his Specialist put him on the Didrocal suppliment hoping it would stop the loss of bone density....   which so far, it has (altho he is now off that as well).
 
This is such a debillitating disease!  G'son has been off work since mid Dec.  The 1st 4 weeks on Prednisone he started to felt better, then when Asacol was introduced he progressively got sicker again.   His money for meds is quickly running out.  He's in bed most of the time, totally fatigued, lathargic and in pain.  Has lost so much weight...  is basically back to square one!  
 
How did you cope during your "allergic" period,  while the Asacol was getting out of your system?  Just suffer?   With diabetis if your blood suger gets out of wack, you can counteract it with insullin or exercise...   how do you counteract this allergy?    Does "Benedryl or other antihistomines" help this allergy (they do for penicillin allergy)?
 
Kops2da:  I'm not sure what proctosigmoiditis is or how it differs from UC of the large intestine, but you've been on some of the same meds for UC for awhile.  How are you coping now?    
 
It feels good to get my concerns out instead of sitting here worrying so much about it.   Thank you for letting a Granny vent.
 
G'son diagnosed December 2008 with moderate to severe UC - just finished Prednisone 40mg; now on Asacol 800 x 6; Didrocal 90 dys; multivitamins; probiotics; boost; flaxseed. 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/22/2009 12:44 PM (GMT -6)   

WorrywartNana - from another Nana - I have four grands - one is a teen.  I can't imagine her dealing with this.  He is lucky to have you to help him if only for support.

Procotosigmoiditis is mostly in the rectal area and up the left side about a foot!  No other part of my colon is involved but it is UC in a mild to moderate form.  The only reason I am not on the mesalamine drugs like Asacol is because I cannot tolerate them.  I got the flu-like symptoms - stopped them all, called my doctor and told him I was not taking them anymore.  He did another sigmoid test and prescribed the prednisone and 6MP.  My flu-like symtoms totally went away in a couple days after stopping but the bleeding and other UC symptoms came back with a vengenance so I had to do something. 

Today not bad and after adding the rectal suppositories I think that part is getting better.  However, not in remission yet!  I am on 20 mg. prednisone until next week and then down to 15mg.  If symptoms (mucous/blood, etc.) is not better by then I will call my NP for instructions.  Have to keep in touch with your doctor or other health care provider.  There is certainly something he/she can do for him.  I would not let it go too long - staying proactive - take him to emergency or urgent care, whatever it takes.  He is so young.  It may take a while for those sores, etc. to subside but they should be getting better.

Good luck!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008  Cannot tolerate mesalamines, Canasa, etc. Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred.
Started on prednisone Feb.7, 2009 - tapering to 20 mg. for two more weeks and then down to 15 mg.etc.  Added 6-MP Feb. 28.
Added Anusol suppositories - March 16 - see doc in 3 months. 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 3/22/2009 3:27 PM (GMT -6)   
My GI think Mesalamine might even cause stomach ulcers.

Diagnosis Oct 07 and then Aug 08: Inditerminate Patchy Colitis. Also suffer from Peptic Ulcers could be related to Asacol. Current Medication: 500mg Asacol Suppositories, 800mg Asacol Tablets x 2 a day.


Southernbelle
Regular Member


Date Joined Feb 2009
Total Posts : 33
   Posted 3/22/2009 5:05 PM (GMT -6)   
Nana, I'm not so sure I'm the best example of how to deal with this. I'm pretty stubborn and after the asacol hell I wouldn't go on any other uc meds for a while. They did put me on an antibiotic but it was so strong that it made me feel even worse so I didn't even finish those. One thing you may want to do is see if the dr will prescribe something for the pain he must be in. I was on vicodin. It's very strong but as long as he only uses it when necessisary and gets off it as soon as posible it will help him through this. It took about a week for things to start settling down. I tried going back to work after the 10 days but the fatigue and other symptoms from the uc were just to much for me to deal with. I took another 6 weeks off to try to get better. At that point I was just on natural suppliments. I don't suggest this for everybody but it worked for me. Slow but sure. I would suggest you get him started on some probiotics as soon as possible. They will help keep things balanced in his colon. The meds tend to mess things up in there.

I don't think you need to worry about the pred suppressing his immune system. It actually works more on the adrenal glands. The pred will actually help with the inflammation. I finally went on it because my sedimentation rate(the blood test that measures how much inflamation is in you system) was getting worse even though I was feeling better. Normal is 20- mine was up to 98!! So I suspect he is a bit toxic but his body will flush some of that out on it's on. Make sure he drinks a lot.

I really feel for him. I know the pain he's in. It will just take some time. I was in such a hurry to get it to all go away when I was first dx but soon realized I had to just take my time to figure out what was going to work for me. It affects everybody differently. Just learn everything you can about diet and suppliments. There is a wealth of info right here. You will have to just try things till you find what works. It is such a scary disease. But the more you learn about it the less scary it becomes.

I sure hope he feels better soon.
58/F/Hairdresser
Dx leftsided UC July 08.Can't handle any masalamine or 6-MP
Been on steroids twice. Do well on those.
Suppliments: Aloe MPS, probiotics, enzymes, C and E, Curcumin,CoQ10,Grapeseed extract, Selenium, Cal.-Mag w/D, Multi., Vit.E enemas, Three-lac
Meds: mild blood pressure. Prilosec, Wellbutrin, steroid suppositories
 
 


WorrywartNana
Regular Member


Date Joined Dec 2008
Total Posts : 86
   Posted 3/23/2009 12:13 AM (GMT -6)   

LondonRed:  Thanks for telling me about your stomach ulcer.  My g'son has had stomach pain since he 1st started Asacol.  The more I learn about this drug, the more I think he is better off without it.

Kops4da:  Being a grandma is such a rewarding experience, hey?  My g'son is phoning his Specialist tomorrow am to tell her all his latest symptoms.  He is a quiet young man and hasn't learned to ask questions yet (he's never been sick before!).  I think he feels a bit intimidated by his GI Specialist and the fact that she is a female, but given time, he'll get used to dealing with UC and all the doc's.

Southernbelle:  Thankyou again for answering my many questions.   My g'son is on probiotic capsules and eats "Activia" probiotic yogert every day.  He takes a 1-a-day multivitamin, and despite the doc telling him to stop taking even the Didrocal.... he is continuing to take that (Didrocal is Vit C/D 90 day kit).  He's taking regular Tylenol for his head aches and joint pain.  Basically, he's on a semi solid diet, soups, juices, that kind of thing.  I believe he is feeling a bit better tonight...   Regarless, he will be speaking to his Specialist in the morn as well as his GP whom he is going to ask to have some blood work done to make sure everything is working as should be.  I think his biggest downfall will be in learning to eat "properly", let alone a  special diet....   like all teenagers, he eats on the run and eats all the wrong things!  Like you say, it will take time.
 
He read this "thread" at "Healingwell" and found releif in all the info each of you have provided.  He was touched by the empathy and caring.  I'm trying to get him to be a part of this forum as I feel he would have tremendous support from everyone here...   perhaps he will join, given time...   meanwhile he is at least reading all the posts (spends hours on his Laptop reading all the UC & CD info here). 
 
Sorry for such a long post.  Thanks everyone, for your support.
 
G'son - diagnosed moderate to severe UC 12/2008 - 1st Prednisone 40mg (now finished); on Asacol 800 x 6; Didrocal 90 dys; reaction to Asacol 800, currently not on any meds;  multivitamins; probiotics; boost; flaxseed; Tylenol & gravol for pain & nausea. 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/23/2009 8:13 AM (GMT -6)   

Sounds like you both have things well under control as far as dealing with UC.  A good idea as far as eating is to keep a food journal - when he feels up to eating about everything - have him write down what "bothers" him in any way - what he can eat with no consequences.  WE are all so different - some of us can eat a little fried food, others can't.  I have no problem with dairy and eat a lot of cheese and milkshakes, etc. occasionally - BUT - burgers don't agree very well when out or french fries.  I cannot eat raw veggies and fruit but canned or well cooked are fine.  He will learn and he will find food every restaurant or grandma's kitchen!  Small meals are better!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008  Cannot tolerate mesalamines, Canasa, etc. Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred.
Started on prednisone Feb.7, 2009 - tapering to 20 mg. for two more weeks and then down to 15 mg.etc.  Added 6-MP Feb. 28.
Added Anusol suppositories - March 16 - see doc in 3 months. 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 

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