Going to start methotrexate......

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

Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 9/9/2008 7:49 AM (GMT -7)   
Going to start methotrexate by injection next week and getting a little nervous. I am afraid I will feel worse than I do now. I haven't had the flu or a cold for years. I am taking folic acid and someone posted that you should drink tons of water the day before and the day of the injection. I know Crohn's and diarrhea can cause dehydration but is there a special need when you are taking methotrexate? My GI also precribes Odansetron for nausea but nurse said I could try Gravol? 
55 yr. old F dx. CD 07/07
Was on prednisone for three months but no medication for the last 11 months. Starting methotrexate in mid-September.


78SilvAnniv
Regular Member


Date Joined Apr 2008
Total Posts : 289
   Posted 9/9/2008 8:13 AM (GMT -7)   
0_o I'm starting MTX next Tuesday, once/week for 6wks, then I can take pills. I read where one person felt awful for the first two weeks, but then felt marvelous. No one (doctors) have suggested any 'precautions' I should take or even suggested I may have any problems or side-effects. I think I'll check my medicine chest for anti-nausea meds. I do take folic acid and perhaps I will increase the amount. Also, is good to know about the hydration.

We'll have to compare notes...
Heidi
I have the ability of single-minded determination and accurate project focu....Hey, look, a cat!
 
Crohn's and UC are pretty darn crappy, but if you can't laugh at yourself, you'll cry. 
I'd much rather laugh.
2001 Dx'd with UC.  No remission.  5/2008 surgery, removal of 6" of left side colon.  Dx changed to Crohn's.  Remission for 8-9wks after surgery, symptoms returning after resuming 6MP.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 9/9/2008 8:16 AM (GMT -7)   
Love my MTX injections the only thing that has worked even remotely for my crohns. yes 3-5 MG for folic acid daily, I was started on just 1 MG and it was soooo not enough. The injection turns your skin at the injection site yellow for a couple days. I like the melt away zofran (odansetron), but I do not see why you couldn't try gravol? MTX has some possible liver side effects so you really want to pee clear and do not drink on it.


Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 9/9/2008 8:47 AM (GMT -7)   

This site amazes me with the quick responses and hooking up with people who can help.

 Heidi-Would like to hear more about you since we seem to have some things in common. I have a stricture in my sigmoid colon and if methotrexate is not successful I am looking at having 6" of my sigmoid colon removed (have already seen a colorectal surgeon who did a sigmoidoscopy). What was your situation before you had your surgery? Did you have a stricture or fistulating Crohn's? This is all fairly new to me. What medications have you tried? I went back to your recent posts and found out you ride horses. That is what we do a lot. My husband cattle pens (just had our CATPA Finals) this past weekend and we ride in the mountains a lot. Crohn's had not affected my ability to ride, golf or curl yet!!

MMMNAVY-Thanks for the info. What is melt away Zofran? Really like my GI but here are things they don't think of telling you.

I have also read the first few injections might be worse. Do you two give yourself the injections? Where?


55 yr. old F dx. CD 07/07
Was on prednisone for three months but no medication for the last 11 months. Starting methotrexate in mid-September.


78SilvAnniv
Regular Member


Date Joined Apr 2008
Total Posts : 289
   Posted 9/9/2008 10:21 AM (GMT -7)   
I understand an oncologist or rheumatologist must give the MTX injections, patients cannot do it themselves.  My GI is 1.5hrs away and I'm in the process of getting a local oncologist to give me the shots for 6wks so  I don't have to drive forever just for a jab in the arm.  He usually only treats cancer patients, not CD patients, and he has been in contact with my GI Dr and insurance.  My local family practice clinic didn't feel comfortable giving me the injections and my local hospital has no out-patient department, but they referred me to the oncologist who comes to my town once/week. 
Next Tuesday is The Day.
 
I cannot think that my CD is very bad, though I have not been in a remission since I was Dx'd in late 2001.  At that time, it was thought to be (and treated as) Ulcerative Colitis.  It wasn't until my surgery that the pathology on the removed section came back definitively Crohn's.  My surgery was intended to be a colectomy (removing the colon) and having a colostomy bag, creating a J-pouch (like a poop-bladder) and then a second surgery to remove the bag and connect the small intestine to the J-pouch.
When the surgeon got inside, he didn't find things as he expected.  He found one major area of diseased colon and everything else looked pretty darn good, to him.  So, he changed the parameters of the surgery on the fly and only removed the damaged portion and reconnected everything internally, so no bag for me!  I'm feeling very well, since the surgery.  Very little D and almost normal poops, though the frequency is still pretty high, IMO. 
 
I've tried asacol, colazal and balsalazide with no positive results. 
High doses of prednisone (60mg then tapering down) gave me the best results, but they also raised my blood pressure and made me gain 50# in a short amount of time.  ...and you can't stay on steroids forever...
We moved on to 6MP, which gave me jaundice.
The Big Gun of Remicade gave me no relief.
Surgery is what did the trick for me, though I still have symptoms and we are now about to try MTX and see how I do with it.
 
Cattle Pens, is that Team Penning?  I've always wanted to try that, but I ride mostly for pleasure around the home, fields and trails.  I also prefer riding bareback.  I have a small Paso Fino, and I think some of the cattle would be bigger than her! 0_o
heidi
I have the ability of single-minded determination and accurate project focu....Hey, look, a cat!
 
Crohn's and UC are pretty darn crappy, but if you can't laugh at yourself, you'll cry. 
I'd much rather laugh.
2001 Dx'd with UC.  No remission.  5/2008 surgery, removal of 6" of left side colon.  Dx changed to Crohn's.  Remission for 8-9wks after surgery, symptoms returning after resuming 6MP.


Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 9/9/2008 12:18 PM (GMT -7)   

Wow, to go into surgery thinking you are having a colectomy and come out without is incredible in itself. My insides have been scoped from both ends numerous times this past year and have been looked at by a physician, 3 GI's, general surgeon and colorectal surgeon (at first look, thought it was probably colon cancer) so they know what they are dealing with before I would have surgery. I have 2 inches of colon which is significantly narrowed and inflammed and otherwise things look good.

I am 2 hours away from my GI and one-half hour away from local clinic. They can teach you to give the injection yourself but first one will be done at the clinic. Have read others inject themselves and some do it at night so that if they have side effects, they may sleep through the worst. My pharmacist is a good friend and she says not many that she knows have nausea but in one case a woman just persevered and they got better with each injection.

I am babysitting my grandson (first time at the farm) this weekend, otherwise would have started sooner. I think the waiting is the worst once I made up my mind to try methotrexate.

Yes that is Cattle Penning and Central Alberta Team Penning Assoication. Nationals (Canadian) are in October. I have tried 2-Man cattle sorting but prefer a slower pace, like trail riding.

I gained 20 pounds in three months on Prednisone but worked very hard to lose it the next three months.

Heidi, can I ask what your symptoms are? You say very little D but tried a lot of medications? I was also given the choice of Remicade but do not want to go there at this time. With stricture, I go 6-7 times a day but very little at a time and no urgency so I do not conisder this a problem. And if I am away from home  for the day I do not need to go without any discomfort. The only symptom I have is a feeling on the left side of the abdomen which I attribute to things backing up at the stricture site?


55 yr. old F dx. CD 07/07
Was on prednisone for three months but no medication for the last 11 months. Starting methotrexate in mid-September.


Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 9/9/2008 12:38 PM (GMT -7)   

MMMNAVY - I was started on 2 mg. folic acid. How do you know that 1 MG was soooo not enough? How do you feel? How do you know it's a shortage of folic acid?

Thanks !!


55 yr. old F dx. CD 07/07
Was on prednisone for three months but no medication for the last 11 months. Starting methotrexate in mid-September.


78SilvAnniv
Regular Member


Date Joined Apr 2008
Total Posts : 289
   Posted 9/9/2008 1:20 PM (GMT -7)   
I have kept a daily poop-chart since March of 2002. I would say my average number of times to the bathroom has been between 12-18. Currently, I'm going about 10-15 times a day. Not all of that is poop. Quite a bit was gas with 'extras'. Trips I would consider a BM are about 3-5, with a few more times (3-8) of 'stuff' that didn't make it out in the original BM trip but aren't a large enough amount to qualify as a BM their own, and the rest are gas with fluid 'stuff' that came out with the air.
If I have to go to the bathroom and wipe my butt I count it.

Before surgery, my bathroom trips numbered into the 20s and could even get into the low 30s. All BMs were loose D with the majority being loose-like-water. There is NO holding back liquid like that and accidents abounded when I couldn't get to the bathroom in time, and sometimes the bathroom would only be 10' away.

Overall, if I was going to the bathroom 6-7 times a day, I would be happy with that, as long as it was somewhat predictable; like several trips for the morning BM to clear everything out. My morning BM takes about an hour and a bit for me to be confident I'm done and can leave the house. Another after lunch or nap and another after dinner. Most of my bathroom trips for BMs are after meals or getting up from laying down. Everything else falls in between, and they are unpredictable. I would much rather have predictable.

Before surgery, my abdomen was distended (from the diseased portion of colon) and the left side was very tender. It was very painful to pass BMs, even though they were mostly liquid, I think it was from the colon straining with nothing productive (solid) to move through it. I would walk slowly hunched over to the living room afterward and sit gently down on the couch and have to hold my left side for 10-15min until my breathing returned to normal and the pain subsided.
After surgery, I can still feel 'something' on the left side, but I don't know if that is the stitches residue, nerves reconnecting or a small area of irritation. I only feel it when waste material (which is now soft-ish/solid) moves through it. That is now one of my new signs that tell me I will have to 'go' soon.
The urgency is no longer so desperate, but I am still unable to hold anything back for longer than a few minutes. Solid-ish waste is easier to hold than looser waste. Things have changed after surgery and it took some time to re-learn what my new 'signals' are, but overall things are much better than before.
h
I have the ability of single-minded determination and accurate project focu....Hey, look, a cat!
 
Crohn's and UC are pretty darn crappy, but if you can't laugh at yourself, you'll cry. 
I'd much rather laugh.
2001 Dx'd with UC.  No remission.  5/2008 surgery, removal of 6" of left side colon.  Dx changed to Crohn's.  Remission for 8-9wks after surgery, symptoms returning after resuming 6MP.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 9/9/2008 1:28 PM (GMT -7)   
The diameter of my ponytail went from a quarter to a dime. Plus they tested for it.

ondansetron orally disintergrating tablets-8 mg
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 9/9/2008 3:42 PM (GMT -7)   
I am one who had two weeks of awful and now four months of wonderful on mtx.
You know 1 mg of folic acid is not enough if you are even more fatigued then usual, get headaches, or are nausious. I felt better the very first day I took 3mgs instead of 1.
You really need extra water to get the mtx out of your body and it also makes you feel better.
If you have more than normal side effects you can get folinic acid (fully reduced folic acid-therefore bioavalable even on mtx) at a good nutrition store-not all of the sell it but the vitamin shoppe does.
By the way it will take a while-the doctors say months-before you notice a difference (I did within 3 weeks and was still on less then a whole dose-I am still only on 15mgs which is not a whole dose).
Then the difference should be remarkable.
Good luck.
Sj

ps. if you are curious about other people's experience with mtx their is a great thread on the arthritis board-about ten people sharing their fears about starting this med (ignore my posts I was whining) and then their experiences as they continued. I will bump the post in case you want to read part of it.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 9/9/2008 4:04 PM (GMT -7)   
the folic acid shots were a great deal of help and yeah I inject both myself or I have a nurse do it just depends on how I feel. But I was a EMT in my undergrad days.
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 9/9/2008 6:28 PM (GMT -7)   
Most patients give their own mtx injections.
Sj

LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 9/9/2008 6:50 PM (GMT -7)   
I have been on mtx now for almost 13 weeks. I give it to myself every friday evening. The first one was done at my doctors office so the nurse could show me how to do it. I had a rough beginning with it. But I was also on 30-40mg of prednisone and we found that the prednisone and mtx wasn't mixing well with me. I just came off the prednisone this week and so far so good. (knock on wood)
Anyway, I do my injections friday nights and I usually don't feel well if I get up early Saturday mornings. But if I get to sleep in until like 10am-11am, then I'm fine when I get up. If I do have to get up early then I usually need a nap in the afternoons. I'm on the max dose 25mg. Most on here are taking less. I'm also only taking 1mg of folic acid a day. When I asked about my doctor about increasing that, he said I didn't need to that I was taking plenty. So I don't take anymore then that. I also drink plenty of water with the advice of sjkly and it helps alot!!!
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS and Arthrities too
 
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone-  I am off of it!!   YAAHH!!! :-)   
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg every day
                           Wellbutrin twice a day
                           Cipro
No Surgeries
 


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 9/9/2008 7:18 PM (GMT -7)   
I was on MTX injections, but only for about 5 months. (It didn't seem to help me so I quit.)

I did the shot myself with no troubles. It was painless and once I got over the mental aspect, not a big deal. I had no discoloration at the injection site or any reaction whatsoever.

I don't know about hair loss as I quit before that became a big issue, but it seemed like I started to lose hair. I was on Folic Acid, not sure if it was 1mg or 2mg.

Good luck to both of you just starting! I was terrified, so I can relate. But it worked out ok.
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--methylpred - finally off 6/15/08, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-yr-old girl

New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, December 06, 2016 1:02 PM (GMT -7)
There are a total of 2,733,635 posts in 301,137 threads.
View Active Threads


Who's Online
This forum has 151273 registered members. Please welcome our newest member, minniemighty.
374 Guest(s), 13 Registered Member(s) are currently online.  Details
alephnull, Uniandra, Jen77, waterbee, Girlie, minniemighty, Mad Martha, Rhaina, jabele, ChickNorris, pmm73, panicgirly, quincy


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