Introducing myself, and looking for advice on risky drugs

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

ellano
New Member


Date Joined Jul 2009
Total Posts : 1
   Posted 7/18/2009 12:00 AM (GMT -7)   
Hi everyone,

I've been reading your stories, problems and advice on here for quite a while now and so I decided that I should join and participate as well.

I'm 19 years old, male, sophomore in college. I was diagnosed with Crohn's when I was 16, quickly failed the first few lines of treatment and ended up on 6MP. I was able to obtain a one year remission on that medication, but starting March of 2009 it stopped working. Life has been rather turbulent since March. I started having quite a bit of bleeding, I was put on 80mg of prednisone, and I started Humira. I had to be hospitalized for a blood transfusion anyways.

I have now been able to taper down the prednisone to 25mg, and I'm on weekly doses of Humira. I'm still bleeding, however, and in the last three weeks my hemoglobin has dropped 2 grams to 9.5, so at this rate I'll need to be hospitalized for a transfusion again soon. I have also lost 20lbs since March, so my BMI is now at 18. My Crohn's is limited to the colon (so far anyways) and the last few colonoscopies have shown 80-90% of my colon to be inflamed.

Since I have been on the Humira weekly for 2 months and I show little to no improvement, my doctors want to try something different.

The two options I am looking at are to start taking methotrexate while continuing the weekly humira, or to discontinue the humira and start natalizumab (tysabri).

I am scared about the combination of methotrexate and humira because of the increased chance of lymphoma when combining an immunomodulator with an anti-tnf. But I'm also scared about the PML risk with natalizumab.

Have you guys had any experiences with that combination, or with natalizumab? Do you have any idea about which of the two options would be riskier?

Thanks in advance for any input.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/18/2009 12:06 AM (GMT -7)   
I am on Humira and methotrexate and am glad to be on both, as I am not sure how I would manage without either drug.

You might like to read some of the relevant posts in the "medications" thread, which you can find in my sig. That might get you started while you're waiting for some of the other members to share their experiences.

All the best, and welcome,

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's


Mac_Gyver
Regular Member


Date Joined Aug 2007
Total Posts : 350
   Posted 7/19/2009 6:27 AM (GMT -7)   
First off Ellano, welcome to the forums, you should be able to find a ton of information here. I had a similar form of treatment the ended with me on Humira. My GI wanted to try a couple different combination's with humira but I was worried about the potential for lymphoma as well. I looked at the risks of tysabri vs the potential improvement and never looked back. I noticed an almost immediate improvement with tysabri and I have been in "remission" for going on 1 1/2 years. It has worked amazingly for me, obviously no one can tell you that it will work the same for you and there are other people who have not had the same results but for me, what It did for me, was worth the risk.

jmiller056
Regular Member


Date Joined Feb 2009
Total Posts : 57
   Posted 7/19/2009 3:10 PM (GMT -7)   
According to the producers of Tysabri, the risk of PML is measured at 0.1%. That is one person out of every 1000, and I've heard that they exaggerated it just to be sure. I think there have been a total of around 4 PML cases ever associated with the drug, which puts the 0.1% too high. They are also working on plasma exchanges and drugs to combat the PML should you develop it, but the damage it did to your brain would be permanent. As far as I know, all of Humira's risks are treatable with known treatment methods. I refused Tysabri in favor of trying to get Humira for a few reasons. I felt that while they both have risks, Humira's seem more light to me, and I would rather start with the older weaker drug and then work my way up. I feel confident in my decision in my case, but my CD isn't all that bad at the moment. If I were much worse, I might go for the big guns now. Good luck with your decision.
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, Starting the Maker's Diet June 17, 2009
Current meds: Pentasa: 3000 mg; Fibercon: 2 pills 3x; Imodium: 2 pills 3x
Been on: Prednisone, Flagyl, Cipro, Imuran, Entocort, Remicade
Kyrie eleison!


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 7/20/2009 9:28 AM (GMT -7)   

ellano,when I first asked my GI about taking methotrexate with Humira, he told me that new research was showing you shouldn't take the two together.  My rheumy, on the other hand, said they have been using the combination for years and that she is comfortable with it.  After exhausting all of our other options, my GI said I could do both together.  It really helped my arthritis to add the methotrexate, but then my liver enzymes elevated and I was told I had to stop the mtx. 

I too am scared of the risks associated with Tysabri (I think that's the only drug I'm scared to take) and have decided that I'm not ready for that option yet.  But, if I become the way I was before the mtx again, I may decide the risk is worth it.  It's really an individual decision based on how bad you feel and how much risk you are willing to take to feel better.  My GI did tell me that we would probably know within a few months in the Tsyabri was going to work and, if it didn't, we would stop it then so that the risk was avoided.  So, it may be something that you try and then decide if it works enough to be worth it. 


Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 

New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, December 07, 2016 11:24 AM (GMT -7)
There are a total of 2,734,157 posts in 301,185 threads.
View Active Threads


Who's Online
This forum has 151309 registered members. Please welcome our newest member, waterfall79.
349 Guest(s), 5 Registered Member(s) are currently online.  Details
Hungrydude, Scaredy Cat, White Bird, quincy, Tall Allen


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer