Big decison to make

Good morning!  It's been awhile since I've posted.  Things have been going ok.  Life has seem to got in the way of my HealingWell posts. 

To give you a quick history...I was diagnosed with Crohn's disease 12 years ago.  I've been on many different medications (Asacol, Humira, Imuran, Cimizia, Methotrexate...) with Remicade being what I'm on now.  Remicade is now causing drug induced Lupus.  I know if I get off Remicade the Lupus symptoms leave also but Remicade was a "last resort" drug for me. 

I'm trying to decide if being on Remicade is worth it.  I now have to add two more medications just to feel somewhat normal (Whatever that is!)  Of course after talking with my GI and Rheumatologist, they tell me it's a decision I have to make without giving me any other options.

My question is since Remicade is my last resort, if I choose to discontinue this drug, what's next?  I've never tried changing my diet and that's a route I'm willing to try.  I've also never have had surgery....is it time for that?  Will removing some of my colon allow me to be on a less evasive drug? 

 

Thanks!

This is a random question but what are the symptoms of drug induced lupus? Is that something you can live with? I've wanted to get off all the big drugs for awhile but it seems like every time I try or even think about it I flare :( I so hope you can find something that works for you. I've been looking into alternatives meds, but haven't really tried anything in particular yet. There is a slew of information and it's quite overwhelming, but interesting. Good luck to you!

*hugs*

What about Tysabri, or LDN, or Thalidomide. Some here have had success with helminths. There's also trials going on for Vedolizumab and Ustekinumab.

From all I have read and heard from others who developed drug induced Lupus you should not continue on Remicade. This is also the manufacturer's recommendation.

When you say last resort med you don't say what else you have tried. Have you already done the other 2 anti-TNF alpha meds in common use? i.e. Humira and Cimzia?

If not, then I would expect your doctor to recommend those since it sounds like remicade controlled your CD symptoms to begin with.

If Remicade never controlled your CD then the research literature suggests you should still try these other meds since it's still possible you will have success with them.

What has your doctor said about your symptoms and continuing Remicade?

If you go to your profile you can add a signature to your posts. This would help avoid being asked about your meds, etc.

If your CD is mainly in your small bowel you could try doing exclusive enteral nutrition (EN) - getting all your nutrition from formula. You can drink it or pump it using an NG tube. OTC versions are some Boost flavors and some Ensure flavors. There are also rx versions depending on what your doctor felt would be appropriate. Any attempt to do exclusive EN should be done under medical supervision, preferably with assistance from a dietician experienced in the use of exclusive enteral feeding. A lot of dieticians outside major medical centers don't have this experience and may not be very helpful.

If you want more info on exclusive EN let me know.

There are other dietary approaches too of course. SCD seems to be popular among folks on HW but my son has only done exclusive EN. He got good results very quickly - within 2 weeks his symptoms improved a lot. The first time he did EEN he was on it for 10 weeks. However when he started eating food again he flared. He did it a second time for 6 weeks to bridge him until we could get him started on Humra + 6 mp.

Have you tried Methotrexate by any chance? I've read of a couple people who failed the TNF-alpha meds but had a good response to Methotrexate surprisingly. It has a little different action than 6-MP so if you've failed 6-MP it might be worth talking to your doctor about it. We switched my son from 6-MP to MTX and he is now holding really well on oral MTX alone. We stopped the Humira a year ago.

Best wishes

Patricia

It looks like you got a lot of great suggestions in this thread! Dang, Lupus is a serious side effect. Surgery rarely seems to be a permanent solution- my guess is when you discuss it with your doc, s/he will probably say you need to take maintenance meds after surgery, anyway. Can you get by with less toxic meds after surgery, like Asacol? Who knows? I'd be interested in hearing what your doc thinks - most docs I've met would just shrug their shoulders. 

You can find out more about SCD at www.breakingtheviciouscycle.info We think it helped my daughter get the most mileage out of her meds. It is strict, but well balanced in terms of nutrients...like meds, it doesn't work for everybody and is tough to follow, but some patients have found it works when all else fails. If it works, then it is a diet you would follow for life.

My daughter has used Entocort, at a small dosage combined with a modified version of the SCD diet (she cheated by eating potatoes and rice) to effectively control her symptoms for years, but because you mentioned the colon, I'm assuming Entocort would not work for you. 

She also used LDN combined with modified SCD  to taper successfully off Entocort. LDN seems to help her avoid getting sick even with the normal stuff - colds, flu. She decided to go strict SCD since Nov 2011, to try to get more mileage out of LDN...she has no symptoms, but we'd like to see slightly better lab results in CRP and sed rate. (Btw, since she has been on SCD, she has ceased to have the upper respiratory bacterial infections that plagued her most of her life.) 

As I recall, a former moderator said helmith (worm) therapy helped her...and you will probably be able to easily find at least one long helminth thread on HW.