Infliximab and Remicade - Surely there is another option???

[stevo70]

Hi everyone,

I am a new member seeking advice on Crohns treatment. I had a flare-up start 7 months ago and my G.I changed me from Salofalk and Iron tablets daily to Infliximab (Remicade) infusions every 8 weeks with Methotrexate every Sunday. I now also take Folate and Iron Daily.

Although I am still experiencing a current flare-up of Crohns, I don't consider myself truely "banged-about" by the disease like so many others. My drama is that the Crohns results in me suffering Iron Deficiency Anaemia which leads to extreme fatigue and the need for regular Iron Infusions. I wish to be on medication with lesser side effects (if at all possible).

Is there medications that can control the disease without the "possible" side-effects such as Lymphoma and other Solid Mass Tumours. I know these are "extremely rare" according to the literature. However, after you develop testicular cancer 6 months after starting on these meds, it tends to bother you a bit?? Any alternative drugs or therapies I would be interested to hear. I have a cousin who has has Crohns for 15 years, has had 3 bowel resections, and yet she has now managed to control the disease for the past 5 years (untroubled mind you) with diet alone plus an annual Colonoscopy.

I am confident the information I need is out there somewhere, I just don't know where to look. Any info on the above issue would be greatly appreciated.

Kind regards,

Stevo

2002 - Bowel Resection
2007 - Dx Crohns (Prednisone and Salofalk)
2008 - Remission (Salofalk and iron daily)
April 2010 - Crohns active, meds changed to Infliximab (Remicade) and Methotrexate plus Folate and Iron Daily. Iron infusions every 6 weeks.
Nov 2010 - Testicular Cancer Dx Surgery - Radical Inguinal Orcidectomy
Dec 2010 - Chemotherapy for TC finished 9th of Dec. (Pending further tests)
Current - Ongoing concerns re: CD treatment

 

[braveheart]

Immunosuppressants can be very helpful.
You may ask your doctor about 6-mp or Imuran.
I hope you get some relief.

 

[CDDad]

Well, it sucks, but these meds are the current state of the art.

As for your cousin, with a history of 3 resections, I think she is flirting with danger by not being on meds. Just my 2 cents.

 

[Lydia]

It sucks but you have to do something to control your disease. I would seek another path of control before weaning off medication. I was med free for 3 years at one point. Maybe consult with a Naturopathic Doctor for non medicine related options. Lots of people manage with the Specific Carbohydrate Diet. I am not one of those people though.

As far as I know the other immunosuppressants like 6 MP and Imuran and methotrexate also have a cancer risk. There is a risk for cancer anytime you suppress your immune system. I choose to take my remicade but I also eat cancer fighting foods, like blueberries, dark leafy greens, and green tea. I used to smoke for my own selfish pleasure and that had a cancer risk. I figure taking remicade cant be as bad as smoking and it actually helps my disease.

 

[stevenb1291]

Stevo70-I concur with what CDDad said. I thought I was controlling my Crohn's through diet and then I had a stroke.

I spoke with 3 neurologists and they all agreed on one thing-starting treatment for my Crohn's.

 

[Lydia]

Stevenb; What does a stroke have to do with crohns? How could your crohns meds prevent a stroke? I am really curious about that.

 

[stevenb1291]

Hi Lydia,

According to the neurologists there are two rare clotting occurrences that can happen in untreated Crohn's. One is a thrombosis that can occur in the sagittal sinus vein and the other is a venous infarct that can occur in the veins of the head. They didn't find a thrombosis in the sagittal sinus vein so the venous infarct is their theory.

Even if that wasn't the cause the rare possibility that it can occur makes treatment a must. It's a no brainer...

 

[Lydia]

Thanks for answering my question.

I had 3 years of unmedicated remission. I was tired of the side effects of the drugs and decided to go off them. I was a no brainer to me to do so. However I was in real true remission at the time. I also have a history of surgery and I dont think going off meds was irresponsible. It worked out for me. I did so much in that time and I had a wonderful drug free uncomplicated pregnancy in that time. When I got sick and nothing I did could control it, I went back on meds. It was also a no brainer when the time came.

Drugs can be very helpful to some and very harmful to others. If I got cancer 3 months after starting remicade, I would totally wonder if it was the remicade and I would try my damnest to find something else. I would try worm therapy, or LDN, or SCD, or a combination. Immunsuppressants are not the only option, and if I got cancer, I would seriously consider other alternatives.

I am lucky so far, I take my remicade, I get full remission, and not any real side effects yet, but cancer would make me reconsider.

 

[ThanksP]

I was med-free for three years. No side effects, no pills every morning. Three years later, Thanksgiving Day I had the worst flare of my disease to date. One year later, after trying every drug and "non drug" I am on Cimzia. It has given me some relief but no true remission yet. I honestly believe that this disease gives you highs and lows, drug or drug free, stress or stress free moments. I have learned that it's basically up to you to enjoy the good while you can and take the bad when it comes. Best of luck to you, I hope you find some good out of the bad and also get some relief FROM the bad.

 

[Lydia]

Well said ThanksP.