Methotrexate Experience?

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lero3645
Regular Member


Date Joined Feb 2010
Total Posts : 21
   Posted 3/8/2010 1:17 PM (GMT -7)   
I was recently taken off remicade for severe complications. I am covered in sores and have lost most of my hair. My doctor put me back on predinose to hopefully deal with the rash and hair loss, but I am refusing all other meds at this point as I am so sick. My doc keeps pushing methotrexate, which I have never taken. I looked it up though, and side effects include itching and hair loss, which is exactly what I am experiencing now. Does anyone have experience with methotrexate? I am also worried what will happen with my active crohn's when I do stop taking the pred because I will then be unmedicated. (Which I would prefer anyways, but my doc's keeping telling me it's too dangerous... They are also unresponsive to the idea of me trying a holistic approach... But I think that's a whole other topic..) Yeah, so rant over. Any advice on the methotrexate??

Everything in moderation, be thankful everyday, and be the most honest I can be. If I can look in the mirror at the end of the day and say I have done these things, I am happy.
 
Drugs I have tried: Pentasa, Entocort/Imuran, Prednisone, Remicade
 
Drugs I am on: None for Crohn's, Predisone for drug induced Psorasis
 
What I need: A bowel resection


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/8/2010 1:29 PM (GMT -7)   
We have a few folks who are on this med, hopefully one will be along soon. I agree with your doc though that you really do need to treat your Crohns at all times. Remember this is a chronic and incurable bowel disease and must be treated at all times. Maybe you should try something like Humira or Cimzia?? Good luck!
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"*

lero3645
Regular Member


Date Joined Feb 2010
Total Posts : 21
   Posted 3/8/2010 1:55 PM (GMT -7)   
I can not take Humira because of my reaction to remicade, but I have not heard of Cimzia. Do you have experience with this drug? I am just afraid to medicate at all, because I literally lost any quality of life I had before I started taking the remicade, and I have been diagnosed with a whole new disease because of the remicade. I am also on state aid, because I do not have health insurance. It limits what my doctors can actually perscribe me. Thanks for your help!
Everything in moderation, be thankful everyday, and be the most honest I can be. If I can look in the mirror at the end of the day and say I have done these things, I am happy.
 
Drugs I have tried: Pentasa, Entocort/Imuran, Prednisone, Remicade
 
Drugs I am on: None for Crohn's, Predisone for drug induced Psorasis
 
What I need: A bowel resection


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/8/2010 2:38 PM (GMT -7)   
I don't have any experience with Cimzia, but if you make a post about it, I am sure someone will be along soon. Please don't make the mistake I did and not treat your Crohns. I learned in a very traumatic manner what happens when you don't treat this disease, an emergency resection and 10 days in the hospital a few of them in ICU. Good luck!
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"*

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 3/8/2010 3:15 PM (GMT -7)   
I'm at week 6 on methotrexate. I don't notice any side effects whatsoever. I inject myself weekly with 25 mg. It took a bit to get used to the idea, but it's getting easier and the idea of driving into my doctor's office every single week sounds terrible!

I'm afraid to be overly optimistic, having failed every other drug on the market ... (really I should get off Cimzia, it's not helping but my doc wants to keep things as they are unless I get into remission.) But, I am tentatively thinking that the mtx is beginning to help me.

Cimzia is another TNF-alpha blocker like Remicade and Humira. It's what they call pegylated - a change to the formula that allows it to stay active in the body longer. Both Remicade and Humira seem to have the problem that the med wears off early for a lot of patients. I can't explain the pegylated part more than that, but maybe someone else could.

I had a reaction to Remicade but was able to try both Humira and Cimzia. Neither really seem to help me, but at least I got to try. Are they worried that it's the general TNF blocker that is causing the sores and hair loss as opposed to it being a reaction to Remicade? Sure would be nice if you could try the others. But if it's the TNF part that's causing you to be so sick, it's not worth the try.
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia, MTX . Dx Osteoporosis 10/08 started Forteo 1/27/09


lero3645
Regular Member


Date Joined Feb 2010
Total Posts : 21
   Posted 3/8/2010 3:25 PM (GMT -7)   

I had a reaction to Remicade but was able to try both Humira and Cimzia. Neither really seem to help me, but at least I got to try. Are they worried that it's the general TNF blocker that is causing the sores and hair loss as opposed to it being a reaction to Remicade? Sure would be nice if you could try the others. But if it's the TNF part that's causing you to be so sick, it's not worth the try.
My offical diagnosis is anti TNF drug induced psorasis. My doctor took me off the remicade and also said no Humira ever. So I am going to guess that Cimzia is off the table as well. I am starting open up to the idea of methtrexate slowly. My doctor said I probably need to start with a shot and then later possibly switch to a pill. Where do you inject yourself? Is it weird? I'm a little nervous...
Everything in moderation, be thankful everyday, and be the most honest I can be. If I can look in the mirror at the end of the day and say I have done these things, I am happy.
 
Drugs I have tried: Pentasa, Entocort/Imuran, Prednisone, Remicade
 
Drugs I am on: None for Crohn's, Predisone for drug induced Psorasis
 
What I need: A bowel resection


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 3/8/2010 4:23 PM (GMT -7)   
Yep, that would rule out Cimzia also. It's so hard to lose meds, huh? It's always such a blow when something like that happens. Sounds like you will be happy to stop the Remicade!

My doctor's office will inject for me, but I don't like to deal with going in every week. That's why I do it myself.

I inject in my thigh. I just alternate weeks between the left and right. It's not too bad, just like a dart throw straight in. it's IM so you don't pinch.

My first GI said the same thing about starting out with injections then moving to oral mtx. It seems like I've read about people having nausea taking it orally, so I'm not too eager to change. Given the way my body handled (or didn't handle) AZA and 6-MP I think I'd prefer to stick to the injections.

Some people say they feel tired the first day after. Or they just don't feel well after the injection. I literally don't notice. I was terrified the first time I tried it... I'd read about it being a chemo drug. But the dose is so very much lower than chemo... Also the first GI who put me on it took me off and gave up hope too soon. He had me stop after 4 weeks because I hadn't noticed an improvement. My new GI says 6-12 weeks and MMMNavy said it took her 6 months for her sed rate to drop to normal. So it takes a while.

They also will monitor your blood levels as you are on it. I had blood work at weeks 2,4 then every 4 weeks. So far I seem to be tolerating it fine. So hang in there... Maybe you can get back to feeling better. Sounds like it's been really, really rough for you.
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia, MTX . Dx Osteoporosis 10/08 started Forteo 1/27/09


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 3/8/2010 7:22 PM (GMT -7)   
I start my first injection 2morrow. Im afraid to. But after being on all 3 TNF's.... Why should I be afraid.

Im on 25mcg of fentanyl so i hope im not TIRED as all Hell. But we'll see.

slg16
New Member


Date Joined Oct 2015
Total Posts : 5
   Posted 10/20/2015 9:16 AM (GMT -7)   
lero3645 - did you end up using the methotrexate or finding anything else to help with your TNF-induced psoriasis? I am currently experiencing exactly the same thing and my doc is pushing methotrexate but I am scared!

Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2690
   Posted 10/20/2015 1:52 PM (GMT -7)   
Hi slg16, lero hasn't posted anything since 2010, so I don't think they are on here anymore. But I'm on methotrexate and Remicade. I haven't had any problems with methotrexate. Besides feeling a bit tired that night and the next day. A lot of people experience some nausea with it as well. It's important to take folic acid if you do go on it. It does help with any side effects. I also do better on the injection rather then the pills. I absorb it better and have less side effects. I wouldn't be scared, it might really help.
~Jennifer

Diagnosed with Crohn's Disease in 2006, but suffering since 1997.
Currently taking:
Methotrexate 25mg
Remicade
Questran
Prednisone (tapered to 2.5 mg)
Failed: Humira, Imuran (caused pancreatitis), Cimzia

novaslady
New Member


Date Joined Feb 2011
Total Posts : 10
   Posted 10/21/2015 12:26 AM (GMT -7)   
I am on Methotrexate and Stelara and have no problems with either ones. I take Methotrexate 25mg a week in pill form and folic acid and so far no side effects after a couple of years of being on Methotrexate, I've been on Stelara for a year now and doing fine, I get an injection every 2 months. They both seems to help.
Diagnosed with CD at 53, now 66.
2 resections and 5 blockages, hernias fixed by surgery, colostomy and stoma moved at last hernia fixing. Hernia back again waiting to see what surgeon will decide.
Now on Stelara, Tylenol 3 for Codeine and Immodium at the present and Methotrexate. Used Humera and Cholestyramine, Immodium, Prednizone and other drugs in the past.

rsh1986
New Member


Date Joined Dec 2014
Total Posts : 7
   Posted 10/21/2015 12:37 PM (GMT -7)   
I had a very similar Remicade to Metho experience. Remicade worked well for ~2 years, then suddenly got psoriasis induced by Remicade (was right when they doubled my Remicade dose from 5 to 10). I got all 3 types of psorasis - scalp, plaque, and palmar (on the hands). Fortunately the scalp and plaque mostly cleared up after stopping Remicade, but the palmar (hands) has NOT gone away and I've been off Remi for 12 months. So I definitely can attest to Remicade sometimes causing more harm than good.

I switched to Methotrexate last December - so almost a year. Sadly, I would say it has not really worked very well. It's definitely doing "something" - meaning, I didn't go into a tailspin flare. But, over the course of the 10 months on it (despite going from 15 to 25 MG), it has worked less effectively each month. I'm now considering moving to Stelara, as I have failed Humira and Remi and my GI is not a big fan of Cimzia.

So, I hope Methotrexate works for you - according to my GI, it doesn't work for many, but can work wonders in those who respond to it. I just wasn't one of those people.

Dingleeire
Regular Member


Date Joined Feb 2012
Total Posts : 188
   Posted 10/24/2015 8:43 AM (GMT -7)   
Hello,

My son was taking Methotrexate 25mg once weekly with Humira. Everything was fine for about six months, then he started getting a severe headache for about two days after taking the dose. Doc took him off methotrexate.

mirowpl
Regular Member


Date Joined Nov 2009
Total Posts : 380
   Posted 10/24/2015 10:23 AM (GMT -7)   
I did remicade and then later added methotraxate. I hope everyone keeps in mind that metho is a low dosage chemo drug that brings it own issues. For me after 8 months i had to stop both remicade and metho due to how sick i was getting I can never go back on either. I stopped all meds for crohn's for 9 months let my system rest. I am now back on humira for the second time. Make sure you ask your DR lots of questions and make ure you know what signs of issues you need to be on the look out for.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 14162
   Posted 10/24/2015 9:10 PM (GMT -7)   
I got septic shock from mtx and a combo of IBD drugs. Talk about a bad experience...
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: no meds. Step One J-pouch Surgery Complete!

Old Cronie
Regular Member


Date Joined Sep 2014
Total Posts : 65
   Posted 10/25/2015 11:16 AM (GMT -7)   
I've been on MTX, folic acid and entyvio for a year
25 mg inj. In the thigh. A little fatigue and nausea at first but after a few weeks no problem.
Has helped me a lot.
The meds are all scary but the disease is scarier. Have to try whatever is available and hope for the best, the alternative is far worse.
BTW maybe entyvio is an option for you it's not an anti tnf, it works by binding to the white blood cells at the site and prevent them from attacking the intestine or something like that.
My feeling is try everything available in every combination until you find something that works.
And don't forget to include alternative therapies as well. Diet, supplements.
They rarely interfere with the meds and usually help a lot.
Retreat is not an option the bridges are burned.

ladjgirl
New Member


Date Joined Jun 2015
Total Posts : 3
   Posted 10/26/2015 1:27 AM (GMT -7)   
Mtx is a dangerous chemo drug. I would try Entyvio. I was told it is in the chemo family as well but not the same. It is a biologic chemo according to my nurses. I had a bad experience with anti TNF's I cannot take them either, I got peripheral neuropathy from humira . I suggest Entyvio.
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