Why am I always in that dang fraction of a % who reacts to every drug?

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j_web
Regular Member


Date Joined Nov 2009
Total Posts : 205
   Posted 1/4/2010 9:37 PM (GMT -7)   
Sorry, just venting.

I've been doing pretty well lately, watching the diet, feeling as normal as I have in a long while.

Thought I'd try to get on a maintenance med, started Asacol last night. Bloody D tonight. BAH. Guess I won't be taking any more Asacol. (This is the second time I have tried Asacol, same thing happened in October but I wanted to challenge it again, just in case it wasn't the med).

I seem to be very med-sensitive, have not yet found a CD drug that doesn't cause nasty reactions. It's very scary not having a 'fix' for when I get really sick.
CD since July 2007 - prenatal vitamins + extra vit. D, vit. C and iron, fish/flax oil, probiotics

Following excellent Omega-3 diet as per James Scala's 'The New Eating Right for the Bad Gut' - got me out of a flare.

Post Edited (j_web) : 1/4/2010 10:15:08 PM (GMT-7)


AzJohnny
Regular Member


Date Joined Sep 2006
Total Posts : 171
   Posted 1/4/2010 9:42 PM (GMT -7)   
I can imagine it is scary! How many have you tried?
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


j_web
Regular Member


Date Joined Nov 2009
Total Posts : 205
   Posted 1/4/2010 9:52 PM (GMT -7)   
Prednisone (15 weeks), Entocort (4 weeks) and Pentasa (12 weeks) did nothing for me. In fact, Pentasa probably acts in the wrong area.
Humira did nothing after 8 weeks, I was very sick, dropping weight fast, getting occasional 'deep' neck/headaches and doc thought I should switch to Remicade.
Remicade - seemed like it could be working but I had horrible reactions during the second infusion (couldn't breathe) - then I could barely move for a few days after, that one is out of the question now.
Cipro - makes me sick to my stomach
Flagyl - caused swelling in my lip, had to stop it immediately

I guess Imuran will be the next one.
CD since July 2007 - prenatal vitamins + extra vit. D, vit. C and iron, fish/flax oil, probiotics

Following excellent Omega-3 diet as per James Scala's 'The New Eating Right for the Bad Gut' - got me out of a flare.


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 1/4/2010 9:59 PM (GMT -7)   
I am with you... I'm always in the small % also. And, like you, Asacol increased my bleeding by about twice the severity. I tried it 3 times then once I tired an ASA-5 enema... I will *never* do that again! It was terrible. A definite reaction.

Good luck with Imuran! I'll keep good thoughts that is the one that works for you! ;-)
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Started Cimzia first dose 2/10/09. Dx Osteoporosis 10/08 started Forteo 1/27/09


AzJohnny
Regular Member


Date Joined Sep 2006
Total Posts : 171
   Posted 1/4/2010 10:02 PM (GMT -7)   
You make me feel very lucky. If that was happening to me I'd feel like I was in a doomsday countdown.

I REALLY hope the Imuran, or something works for you real soon. I'll keep an eye out for how you're doing.
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


j_web
Regular Member


Date Joined Nov 2009
Total Posts : 205
   Posted 1/4/2010 10:13 PM (GMT -7)   
Before I start on Imuran - are there any other 'safer' drugs to try? I am hoping to become pregnant this year and would feel better with a Cat B or better pregnancy drug. I was really hoping the Asacol would be OK.

Anyone had a reaction to Asacol but then done fine on a different brand mesalamine?
CD since July 2007 - prenatal vitamins + extra vit. D, vit. C and iron, fish/flax oil, probiotics

Following excellent Omega-3 diet as per James Scala's 'The New Eating Right for the Bad Gut' - got me out of a flare.


AzJohnny
Regular Member


Date Joined Sep 2006
Total Posts : 171
   Posted 1/4/2010 10:29 PM (GMT -7)   
I know I've read posts from people who have. I would certainly try. Good luck!
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


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/4/2010 10:37 PM (GMT -7)   
When I first got sick almost 19 yrs ago now, my GI at the time put me on Asacol, I took one dose of 4 pills and within an hour I broke out in a whole body rash, with fever, nausea, chills and felt deathly ill, I called him and he told me not to take anymore...needless to say I'm deathly allergic to sulpha meds and as far as the rest go I'm non-responsive to them, the only thing that worked a few times was pred but it no longer has any affect on helping my symptoms...this is why I had to put my skeptisism aside and try the natural route (see my sig below), of course like with everything, what works for some doesn't work for all but it's often a combination of at least a few things that help more than just taking one thing. So here I am, almost 2 decades of flaring to at least some degree (as I've never been in full remission), no internal surgeries and no cancer, so being completely RX free for a crohnie isn't necessarily a death sentence.

:)
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 :)~~~~~~~~


jan2003
Regular Member


Date Joined Jul 2004
Total Posts : 92
   Posted 1/5/2010 6:55 AM (GMT -7)   
jweb, 
 
Imuran (I also tried methotrexate) didn't work for me, but it might help you. Everyone reacts differently to drugs.  I'm injecting Humira now, but noticing some reduced effectiveness. There are a couple of other newer mesalamines - Lialda and Apriso. I hope you find something that works. Good luck!
 
 
pb4,
 
Asacol was FDA approved in 1997 and has no sulfa components.
"Approved by the FDA in 1997, Asacol (Aze-a-call) is a man-made compound that is taken by mouth ..."
"Scientists were able to remove the sulfa-like portion of Azulfidine, while maintaining the full beneficial effect. The result was meslamine, an aspirin-like antiinflammatory drug, named Asacol."
 
Maybe your GI had you start on Azulfidine 19 years ago, and you had a bad reaction from the sulfa component. I took that last spring and had a bad reaction, - no rash, but high fevers, chills and nausea. I switched to Asacol, which doesn't do much for my Crohn's colitis. I'm now also injecting Humira.
 
I also don't see cigarettes in your list of meds, but you've posted several times that you smoke a few daily to help keep your CD flares at bay. (or maybe you quit?) What would happen if you stopped smoking, and continued with everything else on your list? I guess I'm wondering how much of a benefit the smokes have on your colitis.
 
Jan
 

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/5/2010 7:49 AM (GMT -7)   
PB4 I too am allergic to sulfa meds, but I take Asacol and have been maintained on it only for years. It doesn't have sulfa in it. I think too you may be confusing it with Azulfadine, which I can't take either, because of my sulfa allergy.

J-web I say give Imuran or 6mp a chance. There are quite a few on this very forum that have been successfully maintained with one of these drugs for years. I personally prefer 6mp to Imuran.

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"*

JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 1/5/2010 9:39 AM (GMT -7)   

J_Web,

I know just what you are going through.  I have had a mild case for most of my life have CD for about 20yrs now).  I have been on every type of medicine for CD and have had a bad reaction to every single one with the exception of Remicade.  I just started this one.  First two infusions were like Heaven but after the third...I feel like I am in a flare again and that the infusion didn't "take".  This is leading me to believe that once again another failure.

What you may want to do is go online and look for some clinical trials.  Also talk to you doctor to see if he can get you in one.  I almost went to one but I needed to take a bioligic and fail on it first.  Once I know Remicade isn't working..I am going to try getting into a study again.

The one thing I have learned is to not let the failures get to me.  If something doesn't agree with me..I take that as a sign that it wasn't meant to be and try again with something else.  I know I have very limited options now but there is always an option.  Good luck and feel better.  Also know..you are not alone. 


36 yr old Male with Crohn's Disease since '88 - No Surgery yet
 
Been on almost every type of drug with bad results
Remicade since Nov 2009
Prilosec 20.6mg - 2x a day
Multivitamin daily


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/5/2010 11:52 AM (GMT -7)   
Thanks Jan and Nanners....

My 3rd GI tried me on Asacol (with sulpha removed) and I did not respond to it at all and was on it for close to a yr so we gave it a fair chance with no go.

Yes Jan, I smoke 6/day, too scared to stop smoking my 6/day, I don't want to mess with the combination of smoking and the other things I take/altered (in my sig) cuz when I quit smoking before all hell broke loose and my docs all said 6/day isn't anymore harmful than standing on a busy street corner waiting for the light to change (all the pollution/chemicals emitted by vehicles passing by)...besides which, with researchers knowing the specific compound of the carbon monoxide aiding with inflammation in the colon from smoking, they are working on a med that mimics this without all the harmful effects of actually smoking so when they've got that on the market I'll be giving it a go and then hopefully be able to give up my 6/day.

:)
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 :)~~~~~~~~


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/5/2010 12:05 PM (GMT -7)   
Oh yeah I forgot to add that no he definitely put me on Asacol 19 yrs ago which would have been 1991.   This link describes allergic reactions to asacol which are the reactions that I had to it....maybe I was mistaken when I said sulfa drug and relating it to asacol, but I'm allergic to sulfa drugs too.
 


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 :)~~~~~~~~

Post Edited (pb4) : 1/5/2010 12:11:11 PM (GMT-7)


PinkFlipFlops
Regular Member


Date Joined Dec 2008
Total Posts : 73
   Posted 1/5/2010 6:14 PM (GMT -7)   
Right there with you j_web. My GI put me on Apriso (mesalamine - same as Asacol) after my most recent colonoscopy in November. I had a horrible reaction and had to stop taking it. My GI said there is a rare side effect (1 in 100) where the meds actually cause Pancreatitis and judging by my symptoms, he thinks that's what happened. No more maintenance meds for me! Good luck with whatever you try next.
Diagnosed with Ileitus October, 2008 at age 37. Probably Crohn's.  Weaned off Entocort. Celiac Panel negative. Food Allergy testing negative. Intolerance to arugula, raw spinach, pistachios and high fructose corn syrup. What's that all about? Trying to maintain good health and less bathroom visits with diet and DA Colon Care Formula probiotic.


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 1/5/2010 8:04 PM (GMT -7)   
j_web,
 
Since you're looking for something that is safe during pregnancy and you've run through most of the medication options, enteral nutrition might be an option to consider. It's an old treatment for Crohn's involving the use of a liquid diet for several weeks to induce remission or used side by side with a regular diet to help maintain remission. It has been tested in randomized clinical studies in comparison with steroids, and can be quite effective. It's not much used in the US, as doctors tend to think it difficult to ask patients to use a liquid diet for a few weeks, but remains a standard treatment in Europe. It's quick-acting, so it's something you could try to stop a flare while waiting for 6-MP or azathiaprine to work. Just a thought.

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 1/5/2010 9:39 PM (GMT -7)   
right on i would think why not ask your doc about this ..i too am allerfic to sulpha drugs ...congrats on your baby to be..huggles..lyn
                          
                                Co Mod for Crohns, Anxiety/Panic, Alzheimers
   Crohns..Pyoderma gangrenosum,..Anxiety / panic..Fibromyalgia,,Neuropathy...Deaf...Seizures
 
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amytupelo
Regular Member


Date Joined Nov 2009
Total Posts : 38
   Posted 1/6/2010 5:00 PM (GMT -7)   
i understand completely.. the only meds i could take were pentasa and entocort.. i finally decided to try humira after having crappy reactions to imuran, 6-mp and remicade, and failing mtx. and i was so happy to find that i did not have the same rxn to humira. i was also very afraid of running out of options. i hope you find a med that works for you that you can tolerate - there are lots of meds in the pipeline. good luck!
32/F
crohn's terminal ileum - 11 years
pentasa, entocort 6mg, b12, align, canasa
allergies: remicade, imuran, 6-mp, cipro, levaquin

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