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Developed Humira antibodies, doc suggesting methotrexate
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Ulcerative Colitis
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jsanch6couv
Regular Member
Joined : Nov 2014
Posts : 72
Posted 5/11/2017 3:57 PM (GMT 0)
I'm not a frequent poster, but I am a frequent reader. My condition has taken a turn for the worst in the last few months and I'm terrified. I'm desperate for feedback as I realize many in this group have already traveled the road that I am currently on.
I'm two weeks into a prednisone taper, currently at 20 mg, still seeing some blood and urgency. Usually by this stage of a pred taper, my UC symptoms are virtually gone, and this time everything got worse intitially. I had a c diff test that came back negative, but bloodwork shows very low trough level and development of antibodies to Humira. My GI is proposing the addition of methotrexate to suppress the antibodies and increasing the Humira dose to every week.
Through the course of my illness, the only drugs I've ever been on are listed in my signature. My biggest question/concern is why methotrexate and additional dosing of Humira is better then changing to different drugs all together? I see my G.I. next Wednesday. What other questions should I be prepared to ask? And for those of you who have taken methotrexate and Humira together, can you provide feedback as to the results and also side effects? I know that everyone is different, and I'm so grateful to have this forum to come to for feedback!
jsanch6couv
Regular Member
Joined : Nov 2014
Posts : 72
Posted 5/11/2017 9:03 PM (GMT 0)
Also, is methotrexate guaranteed to suppress antibodies??
iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16483
Posted 5/12/2017 12:56 AM (GMT 0)
Once your immune system has developed humira-antibodies it cannot stop producing them, even with methotrexate. That said, antibodies to any biologic can often be countered by increading the dose, which you are doing to weekly. Honestly, I'm not sure methorexrate will stop the course of antibodies. Methotrexate will treat UC on it's own though, ehich is a win.
I wouldn't switch biologics just yet. Small amounts of antibodies aren't a big concern. Try the dose increase of humira. Get retested for antibodies in another 6 months or so and see if it stays the same or worsens. If it gets worse then consider remicade or simponi.
jsanch6couv
Regular Member
Joined : Nov 2014
Posts : 72
Posted 5/12/2017 11:21 AM (GMT 0)
Thanks for the reply iPoop! This definitely gives me something to think about
and talk to my doc about
next week.
iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16483
Posted 5/12/2017 12:43 PM (GMT 0)
Methotrexate isn't commonly prescribed with UC (usually for our crohn's friends). What's more common with UC is imuran/azathioprine or 6MP/Mercaptopurine. I'm on 6MP. Methotrexate is available in oral pill and IV injections.
I'd ask your gasteroenterologist:
1.) Why Methotrexate over 6mp/imuran? Maybe there's a reason but it's unconventional.
2.) How bad were my humira antibodies? Low amount, moderate amount, or high? Will we recheck antibodies in 6 months to see if they remain constant? Will we recheck humira concentration within my blood after the increase to weekly?
3.) If i ultimately fail humira due to excessive antibodies should i switch to another anti-tnf biologic like remicade or simponi? Or should i go to entyvio? My though is stay anti-tnf as you know they work, and there's no guarantee that you'd form antibodies to them.
jsanch6couv
Regular Member
Joined : Nov 2014
Posts : 72
Posted 5/12/2017 2:08 PM (GMT 0)
These are extremely helpful questions! Thank you! I feel so much better having an idea of what to ask the doc.
BTW, the biologics nurse has suggested I see a different GI in the same practice as he has more experience with UC than my current doc. I'll be seeing him on Wednesday instead of my usual doc, so fingers crossed he's a knowledgeable as I'm hoping for.
FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1877
Posted 5/12/2017 11:31 PM (GMT 0)
I'm on methotrexate with my entyvio because my GI said there's some evidence it helps but the jury is still out. He didn't put me on 6mp or aza because a blood test showed I would not be responsive to it (can't remember the exact wording -- a non-metabolizer, I think)
jsanch6couv
Regular Member
Joined : Nov 2014
Posts : 72
Posted 5/13/2017 12:07 AM (GMT 0)
FlowersGal, how are you doing currently? I see from your sig you've been flaring for over a year--I'm nearing that milestone myself
notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17890
Posted 5/13/2017 12:44 AM (GMT 0)
I don't understand why people do mtx instead of 6mp or aza. There's a chance those drugs could help you achieve remission without the biologic. Mtx really has no data showing it very effective for UC. I tried mtx with remicade for a little while. It didn't do anything to make it more effective for me, but I was a non-responder regardless. I did have good luck with 6mp for a while without biologics though, that's why I think it's a better option personally. Have you had stool tests? Do you have good days immediately following your injection? If so, you could consider a higher dose, or more frequent dosing. if you're not having any improvement, and you have high antibodies, it may be time to move on... but yes, the 2nd opinion sounds like a good idea. Best of luck!
cupcakespinkgal
Veteran Member
Joined : Jun 2010
Posts : 1566
Posted 5/13/2017 11:46 AM (GMT 0)
I was on Humira for a few years. Most of that time at the double dose, I took a shot weekly. When they increased me to weekly they also wanted to add MTX, I said no bc we were still undecided about
children at that point and MTX causes serious broth defects so you absolutely cannot get pregnant while on it and have to wait 6 mos after stopping to try. It does seem more common with crohns patients used with a biologic than UC. My increased Humira dose worked for awhile
On its own with assistance of occasional rectal meds for stubborn rectal inflammation. It did stop working and I was eventually switched to Simponi, about
2 months in they wanted me to do MTX with the Simponi, I did the injections weekly, I don't think it helped. I only lasted on the MTX Simponi combo for 6 months.
If you initially responded well to Humira, Remicade could be a good option, very similar to Humira but im my opinion a little stronger and more effective.
jsanch6couv
Regular Member
Joined : Nov 2014
Posts : 72
Posted 5/13/2017 4:01 PM (GMT 0)
notsosicklygirl: I recently had stool test for c diff, which was negative. I also had stool tests in March for c diff (negative), lactoferrin and fecal fat counts, and of course lactoferrin was high. Is there something else I should be asking for in a stool test? Definitely going to ask about
6mp. Thanks for that info.
I can't say I saw better days immediately following my injection. My initial loading dose actually made me much worse, and I did a 4 week taper of pred to bridge the gap to remission. During my 6 month remission, I felt fabulous with only 1 well formed BM daily. Sometimes I would even skip a day! I also didn't see any negative side effects from the Humira. A very stressful event in my life kicked off the flare in June 2016, and it's been steadily downhill ever since. I actually started Lexapro 2 weeks ago (need to add that to my sig) to help with anxiety, but I can't say I'm seeing much difference yet.
I'm beginning to think the extra dosing of Humira may be the way to go. My trough level in September was 13.4 and I had no antibodies at that time. My recent blood work showed a trough level of 1.7 and antibodies of 122. I think it's also worth mentioning that I stopped at the Humira for an eight week period during a really bad respiratory infection at the beginning of this year. When I did the reloading dose, I was already flaring very badly. My current theory is that everything was rocketing through my system and not having a chance to absorb.
Thank you all so much feedback!
FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1877
Posted 5/14/2017 7:33 PM (GMT 0)
I started entyvio 6 weeks ago. Had my 3 loading doses and now waiting for 8 weeks for the next. Tapered odd pred this week. So far so good. I think (hope) entyvio is going to let me see what remission is. (Knocking on wood)
jsanch6couv
Regular Member
Joined : Nov 2014
Posts : 72
Posted 5/16/2017 1:41 AM (GMT 0)
Flowers, I hope you get some relief!
jsanch6couv
Regular Member
Joined : Nov 2014
Posts : 72
Posted 5/24/2017 10:46 PM (GMT 0)
Saw a new doc last week, and I agreed to start methotrexate. He also increased my Humira dose to weekly and took me off of Lialda. I also finished my pred taper today.
I took the first dose of mtx Saturday nigh, and I seem to have done ok so far--no nausea or abdominal pain. I've been able to sleep without getting up for the bathroom for the last 3 nights, something I haven't done in months. Even though I'm just finished a month long taper of pred, I'm still seeing some blood and mucous. Frequency is almost "normal" but still experiencing some urgency. I'm a little concerned about
being off of daily oral meds, but the doc thinks the Humira, mtx, and Rowasa will get me to remission. Thoughts?
notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17890
Posted 5/25/2017 2:22 AM (GMT 0)
The improvement sounds good! Perhaps the GI is right. What were the daily oral meds? Lialda? Maybe your GI thinks it was causing bad side effects. Some people get UClike symptoms from mesalamine if they are intolerant, but if you took it for a long time without issue, it's unlikely you're suddenly intolerant. Some people stop some of their lower-level meds when on higher doses of prednisone. If you're 100% on pred, you can always add more meds as you tape, see where you are. I personally didn't have any positive response to MTX, actually I ended up with a bad infection and got septic shock, but that's rare. I did a lot better on 6mp. 6mp alone got me into a fairly decent remission that lasted a couple years.
jsanch6couv
Regular Member
Joined : Nov 2014
Posts : 72
Posted 5/25/2017 2:30 AM (GMT 0)
Yes, Lialda was my daily med. We discussed 6mp, and he felt the mtx would be faster-acting.
My prior pred tapers left me blood-free by the end of them. Everything about
this taper was different. I didn't even have a lot of the bad side effects like I usually do. I'm hoping the last bit of blood and urgency I'm still experiencing don't last much longer!
notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17890
Posted 5/25/2017 2:41 AM (GMT 0)
6mp takes a long time to work, but it's well-known, and effective treatment for UC. MTX is not considered a UC treatment usually, but it can help to prevent antibiodies to biologics. That's as far as I understand. I could be wrong of course.
UCinsouthfl
Regular Member
Joined : Mar 2014
Posts : 194
Posted 11/6/2017 4:36 PM (GMT 0)
I'm currently on Humira and was just switched from 6mp to Mtx. My Dr. told me the reason is that there is a greater chance for some kind of disease or infection with the combo of 6mp and Humira. Humira and MTX are supposedly safer.
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