NOT taking Remicade---Help!

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JD23
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 6/6/2009 2:51 PM (GMT -7)   
IS anyone here have REMICADE and others like Humira and Immuran as there only treatment and DO NOT want to go that route because of the dangers associated with immunosuppresants?? I'm allergic to all steroids, asacol does nothing for me, i've tried it all and my last resort now is only remicade.. my family is TOTALLY against me going on it consdering i have a lot of other health issues and they feel i'm not healthy enough to even try it and the side effects and possible outcomes are not worth it etc.. and honestly, i am totally scared and do not want remicade as well. i've had GI docs in the past tell me they would not put me on it because of the risk/liability and the doc i have now is willing, but me and my family are not, but thats the only treatment here. i dont know if its even worth seeing my doc every month if i'm not going to do any treatments and just deal with what i have the way i have been etc.. and surgery is not an option either.

my main question is there anyone else out there that is not wanting a treatment that is their only option such as remicade? and if your against it, does your doc just give up on you or see you as a hopeless patient?

thanks for your responses!

Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 6/6/2009 3:38 PM (GMT -7)   
I have not been on it, so I cannot say anything good or bad about it. I do know if I was feeling as bad as you say you are that I would rather attempt to feel good than to not take it and feel miserable for the rest of my life.
My wife has a co-worker that has been on Remicade for over two years and she is doing great, she said that it is her miracle drug. How do you know that Asacol wasn't working for you, just curious as that is what I'm taking and would like to know what happens when it stops working.
Thank you and good luck with your decision.

Wolfie
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Folic Acid, Multivitamin, Dbl. Calcium, Probiotics, Protonix, Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


JD23
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 6/6/2009 4:25 PM (GMT -7)   
thank you for your response. Asacol was not working for me in the way that I kept rectally bleeding, my pain was worsening and my diareah was not reduced so all my symptoms were not at all being treated. i was taking 16 pills a day. my doctor says the same thing you did- well why not taking it to TRY to get better, but with most medications, i'm very sensitive, get really sick very easiyly and cannot tolerate most, so why put myself through MORE torture with worse side effects than just deal with that i have now. do you think because i'm against my last option my doc is going to give up?

thanks again.

jhicks
Regular Member


Date Joined May 2009
Total Posts : 177
   Posted 6/6/2009 5:07 PM (GMT -7)   
Hi, I was told 2 weeks ago by my GI that he thinks it's time that I move on to Remicade or Imuran. I, too, am VERY RELUCTANT, and quite frankly, terrified of going on the drugs. I have been suffering with swollen joints for three months, and had it continued at the rate it was, I may have broken down and tried one of the drugs. (I've been in remission and on Pentasa for the last four years with hardly any problems. Yay!) My gut is not giving me symptoms, but a colonoscopy confirms the Crohn's is back. I am keeping Remi and Imuran on the back burner as long as I can, but I'm also working to adjust my attitude. (I, too, tend to get the rarest of the rare of many conditions, etc.) I keep thinking that 10 years ago, these drugs weren't around, so I would have almost NO options other than steroids. So while I'm not on these drugs at the moment, I am thankful that they exist. I have had the enzyme/blood test for Imuran and know now that I CAN take it. My GI has written up orders to pretest me for Remi (liver function baseline, etc), but I have yet to get that done. He went ahead and wrote me a prescription for Imuran, which I have not filled. I'm sure he thinks I'm going ahead with the blood tests and having it filled, but I'm not. I don not think he'll give up on me. But I do think he'll respect my decision and will eventually call to see where I am on the decision. I really pray for your peace of mind and guidance to find and do what you think is is YOUR best interest. There is some validity, I think, to not living the rest of your life in miserable and debilitating pain on the very small chance that the drugs could eventually, possibly, down-the-line somewhere have an adverse affect on your health. The risk is real, but it is small. Your life, and all its possiblities are too big not to at least consider these OPTIONS. At least there are some!

Best of luck!

JD23
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 6/7/2009 9:05 AM (GMT -7)   
wow, its so nice to hear someone else is in my position as well. can you NOT tolerate steroids too? why are you not wanting to try remicade and imuran? how often do you get colonoscopies or endo's done? and how often do you see your doctor? thats good pentasa works for you, at least you are on something. i just dont like the idea of IV fusions vs. taking a pill etc.. if you have a bad reaction to the pill, you can just throw it up and its gone and you feel better.. with an IV fusion, thats a whole different story and if you did get sick from it, its not like you can do the same. anyways, i hope you feel better too~

jhicks
Regular Member


Date Joined May 2009
Total Posts : 177
   Posted 6/7/2009 9:33 AM (GMT -7)   
I have been fortunate enough to have never been on steroids. My GI tries to avoid steroids at all costs because of all the long-term damage they can do. My cousin was on prednisone (they never even knew her initial condition) for a couple of years. She is now completely dependent and has multiple vertebrae fractures, skin wounds, cataracts and all sorts of problems. She is in her 40s. She has been hospitalized and in a skilled nursing facility for most of this last year as they try to wean her to a tiny dose. She is in horrible shape and it scares the bejeezus out of me. I'm actually more afraid of steroids than Remi and Imuran! I am afraid of Remi and Imuran for other reasons. One is that when combined, there is an increased association with developing lymphoma. Even alone they can make you more susceptible to viruses and infections, etc. My mother died of leukemia and a very good friend of mine died of lymphoma last year (she was 44 and it was NOT related to these drugs, however). Imuran, in particular, can suppress the bone marrow. I'm probably more acutely aware of/frightened of these risks because of my personal experience of seeming to get the rarest of the rare of so many things. I completely understand your concerns. But I will say, I am NOT completely and forever ruling Remi/Imuran out. Like I said, I'm grateful that they exist and that they are an option. So far, I'm managing OK on my own and hoping I can manage this way long enough for another less scary treatment option to come along. If my condition severely deteriorates, I will consider Imuran/Remi as I refuse to give much more of my life up on the small, but nonetheless real, chance of other problems. Crohn's is a robber and it has taken enough!
After my resection 4 years ago, I did magnificently well. Did not have a colonoscopy til this year after arthritis pains became overwhelming. It confirmed reappearance of the Crohn's, which, as of now, is limited to my large intestine.
If you are suffering a lot, please don't totally rule out these options. At least you have some

jhicks
Regular Member


Date Joined May 2009
Total Posts : 177
   Posted 6/7/2009 9:41 AM (GMT -7)   
By the way, this is what I'm doing now to manage my Crohn's and arthritis: Pentasa (1,000 mgs 2x day); vit. D, Isatis cooling (Chinese herb recommended by my acupuncturist), Osteo-biflex, Mobic (NSAID ok'd by my GI), Fish Oil, Acai berry, turmeric, multi-vitamin.

I also go to acupuncture and just ordered a juicer to try and supplement my nutritional needs.

blueclassring
Regular Member


Date Joined Feb 2007
Total Posts : 385
   Posted 6/7/2009 10:06 AM (GMT -7)   
Since were speaking of alterative treatments, I would recommend looking into the Specific Carbohydrate diet. Do a search on google and youtube(lots of good videos on it). Remicade is an immunomodulator(dampens inflammation markers to prevent an inflammation response) which you will have to be carefully monitored.
Pharmacist as of 6/12/2009.
Diagnosed 8/99. Suffered for almost 10 years. I am currently on the Specific Carbohydrate Diet and am nearing remission. I feel fantastic! I have lossed so many years to this disease.

MED-FREE!!!

Doc wanted to put me on 6-mp or Remicade, but I refused to take the medications! Currently on the Specific Carbohydrate Diet.  I'm in remission and life is like it always should have been.


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 6/7/2009 10:18 AM (GMT -7)   
Just ditto-ing what blueclassring said. Like blueclassring, my son is med-free and follows the Specific Carbohydrate Diet. My son's GI wanted him on Imuran, but 8 months later (after being on the diet that long) declared him in full remission and said he could stop his only med--Asacol.

Good luck to you!
Mom to 17 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium, vit. D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too.


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 6/7/2009 10:54 AM (GMT -7)   
Why is surgery not an option?
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 8mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements or infusions.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


jenngrl81
Regular Member


Date Joined Oct 2007
Total Posts : 208
   Posted 6/8/2009 11:07 AM (GMT -7)   
I'm on both Imuran and Remicade. I was terrified too, at first, but I couldn't deal with the pain and not being able to function with this disease. Remicade has really helped, don't know if it's helped on the level to consider it a "miracle", but I feel a lot worse when I'm due for my next infusion. Takes some time getting used to but you shouldn't be terrified...I'm more scared of what my insides would look like now, after not being on Remicade for almost a year. Definitely would've had to have surgery. I'm being weaned off of Imuran next month so we'll see how Remicade works by itself.
You really just need to think about what could happen to your body if you don't take it...weigh the pros and cons. I don't know how your quality of life is right now, but doesn't sound like a walk in the park. No one can give you the right answer because it may not work for you, but isn't it worth a shot?
Pentasa- 1000mg/2x 1/08; Percocet
Remicade 1st infusion 7/24/08
Ultram ER 200mg; Prilosec 40mg; Xanax-ANXIETY; Cymbalta 60mg
Entocort 9mg
Probiotic
Ferrous Sulfate 325mg/daily for anemia
Azathioprine 150mg
Currently on a Low-residue diet as of 11/26

I'm so tired, when will this get better?


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 6/8/2009 11:32 AM (GMT -7)   
Regarding dietary suggestions, I'm going to add enteral nutrition, an old treatment for Crohn's disease in which you use special liquid formulas instead of regular food and beverages for a few weeks to induce remission. If it works for you, then you can use smaller amounts of the formula alongside regular food to help maintain remission. It's an established treatment, tested in clinical studies, but generally isn't offered much in the US because doctors think it's too difficult to ask patients to give up their regular diet temporarily.

chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 6/8/2009 12:01 PM (GMT -7)   
Um, who wants to be on those drugs?! Most of us on those drugs are on them bcause we have no other choice. I have been on remicade for 4 1/2 yrs., and was on imuran also for 2 of those. Remicade has given me my life back...I was a total mess and gravely ill, and I had no other options but to give remicade a shot. I have absolutely no problems with it and no side effects.

pillpopper
Regular Member


Date Joined Jan 2009
Total Posts : 209
   Posted 6/8/2009 7:07 PM (GMT -7)   
Agree with Rider Fan and chroniemomx2.
Surgery and Remicade.I add maintinance drugs,
which give me remission,and a normal life for me.
diagnosed 1981
remission until 2006
Remacade,resection
B-12,Pentasa,Loperamide,
Entocort, 6mp,Hydrochlorothiazide
Remission since surgery
and 8-week Remacade.
d since 1981(enjoy the look
on Dr's faces)


mmckenna
Veteran Member


Date Joined Jan 2006
Total Posts : 725
   Posted 6/9/2009 1:10 PM (GMT -7)   
Going on 6 years on Remicade without an issue. I was in the same boat, Asacol stopped working and I was in the hospital facing a resection. As a last resort, my GI chose to try Remicade, and I'm thankful he did. It worked wonders, and I'll happily go as far as to call it MY wonder drug.
I don't have any side affects from it, and none of the fears that my GI or I initially had ever materialized. I get 1000mg every 8 weeks, which is considered a double dose for someone my size. Even at that double dose, no problems.

Be very, very careful about what you read on the internet about drug warnings and others experiences (even mine), as ALL drugs have risks, and EVERYONE reacts differently.
Also, keep in mind that people rarely post comments about just how well everything is going. On sites like this, people are usually here specifically to talk about a problem. Make sure you get a balanced view of any new drugs you are taking, both good and bad, and then make up YOUR mind.

Don't pass up on a drug just because it didn't work for someone else, or that someone else chose to not take it due to the risks. Surgery is a permanent thing, and once they start taking out guts, chances are they will need to keep doing that in the hopes of keeping you in remission.

Whatever you choose to do, I hope that you find a treatment plan that gets you into remission and keeps you there.
Hang in there.
Matthew McKenna,
Joey's dad.

Remicade, 6MP and a few of their friends.

"I'm just along for the ride."

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