What meds are left?

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dietcoke
Regular Member


Date Joined Jul 2008
Total Posts : 186
   Posted 2/4/2010 2:04 PM (GMT -7)   
I haven't posted here in over a year . . . was doing okay, but now not so much. I'm at the end of my rope here. Been through almost all the meds and nothing has worked, in fact, most have made me significantly worse. Here are my options -- or else the big C with a bag, which I really don't want:

Methotrexate (Doc is hesitant to try me on this)
Tysabri (Doc wants me to do this one)
Cyclosporine
Clinical trials - although my doc hasn't mentioned these

What would you do?
39 years old female, Dx'd 2000 Crohn's Colitis in entire colon
Hypersensitive/Allergic to Asacol/Pentasa/Budonside/6MP/Immuran and more
Past meds that worked: Cipro, Prednisone
Just stopped Humira 1/1/09 (Didn't work - bad side effects too.)
Started Remicade 1/15/09 ... and waiting for it to work

Daily: Folic Acid, Vitamin C, Fergon Iron Supplement, Omega 3, Multi-Vitamin


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/4/2010 2:12 PM (GMT -7)   
Why not Methotrexate? Quite a few have good luck with it and it helps with joint pain too.
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"*

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 2/4/2010 2:17 PM (GMT -7)   
MTX isn't a bad option, but I would do Tysabri. It seems like it's the most effective biologic and I think the PML risk is miniscule. Cyclosporine is nasty and isn't a long term solution anyway. Trials are always an option but what if you get placebo?
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

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


Go Saskatchewan Roughriders!


dietcoke
Regular Member


Date Joined Jul 2008
Total Posts : 186
   Posted 2/4/2010 2:19 PM (GMT -7)   
As far as Methotrexate, I'm not sure why my doctor is hesitant for me to try it.

I've read a lot of people have experienced hair loss on it, which I am really prone to -- so I didn't push it at my last doctor appt. I know it sounds silly but I've already lost so much hair from being on and off pred, that I really can't take any more.
40 years old female, Dx'd 2000 Crohn's Colitis in entire colon
Hypersensitive/Allergic to Asacol/Pentasa/Budonside/6MP/Immuran/Humira/Remicade, and more
Past meds that worked: Cipro, Prednisone

Daily: Folic Acid, Omega 3, Multi-Vitamin, Cipro 1000mg


dietcoke
Regular Member


Date Joined Jul 2008
Total Posts : 186
   Posted 2/4/2010 2:21 PM (GMT -7)   
Tysabri scares the crap out of me. plus i had very bad reactions to humira and remicade so i just don't think it will work. i'm obviously very negative now.
40 years old female, Dx'd 2000 Crohn's Colitis in entire colon
Hypersensitive/Allergic to Asacol/Pentasa/Budonside/6MP/Immuran/Humira/Remicade, and more
Past meds that worked: Cipro, Prednisone

Daily: Folic Acid, Omega 3, Multi-Vitamin, Cipro 1000mg


jmiller056
Regular Member


Date Joined Feb 2009
Total Posts : 57
   Posted 2/4/2010 3:07 PM (GMT -7)   
If I were you, I would go for MTX first. My doctor wanted me to go on Tysabri as well, but I refused and insisted that I go on Humira. If the MTX doesn't work... I would give Tysabri a go before the alternative. I read that the measured risk for PML is less much less than the 0.1% they give and those who get it are usually on it for about a year and a half. Good luck getting this figured out.
23 y/o Male; Dx Crohn's Disease in 2001 at age 14.
Lost 3 inches of colon and 7 inches of ileum in 2004 bowel resection.
CD returns in October 2008 in the Terminal Ileum.
Current meds: Humira; Fibercon: 2 pills 3x; Imodium: 2 pills 3x
Been on: Prednisone, Flagyl, Cipro, Imuran, Entocort, Pentasa, Remicade
Kyrie eleison!

Post Edited (jmiller056) : 2/4/2010 3:14:26 PM (GMT-7)


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 2/4/2010 4:06 PM (GMT -7)   
Have you tried enteral feeding, or TPN? Sometimes people have great success with that. Me, I'd certainly want to be trying either of those before something like Tysabri.

You can find more information by clicking on the "diets" link in my sig.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


dietcoke
Regular Member


Date Joined Jul 2008
Total Posts : 186
   Posted 2/4/2010 5:40 PM (GMT -7)   
I have not even looked into enteral feeding or TPN --- and none of my doctors have suggested it. I see one in Boston and had a recent consultation in NY. I actually don't know much those other than what I just googled. Will research more I guess.

I did do the SCD earlier this year for 4 months, but I couldn't tell if it worked because I was on 60mg pred at the same time --- and yes, I felt better --- physically at least. I might try it again.

Thanks for all your answers. I really appreciate it.
40 years old female, Dx'd 2000 Crohn's Colitis in entire colon
Hypersensitive/Allergic to Asacol/Pentasa/Budonside/6MP/Immuran/Humira/Remicade, and more
Past meds that worked: Cipro, Prednisone

Daily: Folic Acid, Omega 3, Multi-Vitamin, Cipro 1000mg


willj
New Member


Date Joined Dec 2009
Total Posts : 19
   Posted 2/5/2010 9:04 AM (GMT -7)   
Methotrexate is a good option to go for, avoid Tysabri if possible (very rare but possible infection of the brain) but I would ask for a clinical trial for Traficet-EN or Anti MAP treatment.
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