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03-13-2013, 03:57 PM   #1
Brian'sMom
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Methotrexate advice

Our last few GI visits have been bothersome. She seems to threaten Methotrexate but never prescribes it. My son's inflammation markers are creeping up. 2 Months ago SED was 19 and CRP 1.0. Last month SED 24 and CRP 1.3 Today was 31 and 1.6 She brought up Metho again. I asked if it was oral since he was on Humira injections. She said no. It'd be injections and he'd have 2 days of nausea and flu like symptoms and body aches. She said "So do it on Friday so he'll be sick on weekends". I asked if she diagnoses medicine on just lab work alone (We haven't had a scope in 3 years). My husband wanted her to be sure before she changes meds (Let me add he's been feeling great and has gained weight and height- not a lot, but in the past if he is flaring he loses weight fast). She really upset me today because she acted like she's never seen Brian...and we've been going to her for over 2 years! I had to remind her of everything. And she was doom and gloom doc. Lately she seems like a doctor whose had way too much caffeine!! Today she was spurting out everything that entered her mind to the point that my son began to cry. ('We need to do an MRE, a colonoscopy, add methotrexate injections...on and on...') I looked right at her and said "You are overwhelming him...all of us...please stop!" I asked about EN and she would only discuss total EEN and then said 'If you ever stop all symptoms return" It was constant negativity.

What are the benefits of Methotrexate? (All GI dr told us was how sick he'd feel). Is the injection better than the pill form? I know the pill doesn't have the sick side effects...I think. I said, why can't we just go back to weekly Humira...she said she didn't want to do that because he was getting sick often in Nov and Dec and it ended with first case of C Diff.

FYI we have colonoscopy on this upcoming Tuesday. WHY O WHY can't we get into remission?????? I'm so afraid she's just going to look for some grim thing to tell us. I used to love her...last few months I don't know what has gotten into her. Sorry this is so choppy!!
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
03-13-2013, 04:13 PM   #2
parentnj
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Our 13yr old son just started 25MG of Oral Methotrexate (pills) last week with a prescription of Zofran (to stop nausea). He must (as anyone who takes MTX) take Folic Acid supplements as well. MTX can put you in remission ... and for some people it can keep you there for awhile. You must get monthly blood tests to watch liver function and some people also develop lung issues as well so watch for dry hacking coughs. Not everyone has the nausea and flu like side effects ... our son did not have any side effects after his first dose ... knock wood, fingers crossed etc, etc.

The reason we chose MTX is that our next step will be Remicade. MTX is often given as a compliment to Remicade as it is thought to inhibit antibody formation to the drug. So we will just add Remicade to MTX if it becomes necessary.

Our son had been on 20MG of Prednisone for several months. He has tolerated it well and it has him in remission. However we are very anxious to get him tapered off as the long term side effects are awful. I hope you find the right treatment plan for you. We switched doctors when we felt that the treatment path for our son was not fitting our goals. I think its important to get agreement with your doctor on plan b before its necessary to implement. If this treatment fails, what is next? Having an agreed plan in case this course of treatment fails has our son feeling more confident about what is coming next and he does not feel like this treatment is all or nothing.

Good luck to you, I hope your son feels better soon ... many people here have more experience with MTX and I am sure they will chime in.
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Son Alec 13yrs old - DX 11/2012
Remicade
Methotrexate 12.5 MG Oral & Zofran weekly
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2000 IU Vitamin D Daily
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03-13-2013, 04:24 PM   #3
Jmrogers4
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We did pill form of metho usually Friday nights and we did not have the nausea etc and no Crohn's symptoms, it was great except Jack had a reaction and developed some lung issues and constant deep hacking cough so we had to quit the metho, but in our case it really kicked Crohn's butt and was the first time he did not feel any symptoms.
Jack actually did not mind the pills although it was a lot of them at once (I think he took 6) they were little and it was only once a week, he loved that.
Colonscopy will hopefully give you some better answers and see what is actually going on. Jack's doctor can get a little like that but with him I know he is just thinking out loud of all the possible scenerios, he brings up remicade just about everytime we see him but in the next breath says we'll save that in case we really need it. Jack and I have gotten to the point where we say "What are our options? and if we do this.. then? and if we don't? Seems to bring him back from "doctor land" where thoughts are just flying around.
Can you just tell her if she thinks methotrexate is the best medicine for him right now then you want to try the pills first.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
03-13-2013, 04:28 PM   #4
my little penguin
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Actually- the pills are more likely to cause nausea.
The shot is needed since most kids have trouble absorbing the Mtx so all the side effects none of the benefits .
The Mtx changes the way body processes the biologic allowing it to be more effective.
If you take folic acid daily it can reduce the flu like symptoms .
Also take the shot early Friday so you sleep through the worst of them since we found if DS took the shot too late he was tired the next morning but if he took his shot right after school no real side effect.
He did have alot of bruising which we thought was Mtx but he also has that on just remicade .
As far as EEN - your Gi is right all the studies state the same thing remission in some mild cases when tried early on but after a year or two the odds of remission really drop for EEN even then once you start food the remission is typically lost.
Your Gi is just going by published studies.
As far as how he is feeling versus numbers
I think the fact things are going up is not good.
Verifying what that means by scope and mre are both logical
Things to do - just do not be surprised if there is more damage found
Since most studies would predict damage in without external symptoms .
This has nothing to do with the Gi but just the disease.

I know scopes are scary especially if numbers are going up and he hasn't been scoped for a while.

We are here for you
Good luck Thursday
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03-13-2013, 04:34 PM   #5
Clash
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Brian'sMom, I have heard the opposite, less side effects with shot than with pill. Kwalker, I think switched from pill to shot due to side effects when he was on MTX. Our doc also mentioned the shot had less side effects but that we would try pill form first.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
03-13-2013, 05:30 PM   #6
KWalker
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Hello! Yes I did switch from oral methotrexate to injections because the side effects of the pills were awful for me. My doctor even told me I needed to take the pills on Saturday mornings because I would feel like crap for the day of, and even the day after....and he was right! I spent so many wasted weekends on the couch because I had terrible side effects from the oral methotrexate that I felt like death.

For many, the side effects occur during the digestion period so when you inject (subcutaneously) you skip that period. When I switched, I not only had more success, but I also didn't have any of the side effects I did taking it orally. When I first started the injections I had headaches here and there but it was easily fixed with tylenol, and then occasionally I had night sweats which are seen to be a side effect, but for me that was just more of an inconvenience. The side effects were NOTHING compared to the side effects I had before.

You're probably wondering what kind of side effects I had from the oral MTX, and I can't even explain it, but it felt like I was dying. I literally spent the whole weekend on the couch and throwing up.
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Age 2 (1992)

Previous Meds:
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Remicade
Humira
Methotrexate (oral)
Methotrexate (injections)
Cipro
Flagyl

Current Treatment:
200mg Simponi, Psyllium
03-13-2013, 05:34 PM   #7
Brian'sMom
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Kwalker, Did the methotrexate help? And is the shot a pen or syringe. Does it hurt like Humira?
03-13-2013, 05:38 PM   #8
my little penguin
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Syringe with a small bottle.
Nurse demonstrates how to give the shot at home and trains you.
03-13-2013, 05:39 PM   #9
KWalker
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When I was on methotrexate I wasn't in a very bad spot so I can't really say if it helped, but it definitely maintained what I had. Does that make sense? It is nothing like Humira. Methotrexate is used in a syringe, and probably the smallest syringe you will ever see/use. I've had both and I absolutely hated doing the Humira. I never did get used to it going in, where as I had no problem with the methotrexate and even did the injections myself.

The injections go in the top of the leg but it's virtually painless. From what I've heard it's even "dummy proof" in a way that you can still inject even if there are bubbles in the syringe, which are sometimes a pain to try and get out
03-13-2013, 05:52 PM   #10
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when i did the injections, i had no problems with it...small needle (insulan needles). My inject site was my love han...i mean belly...pretty easy to do yourself once you get used to the thought of doing it.
03-13-2013, 08:05 PM   #11
Dexky
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Kathy!! I didn't know Brian was having so much trouble. No experience with the metho but, I'm curious since it seems we are right behind you on the Humira front with EJ doing weekly. I don't like the sound of two days of nausea and fatigue per week. I hope it doesn't come to that Kathy…for anyone!!
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EJ dx w/ Crohn's 12/09
PSC 3/10

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03-13-2013, 09:23 PM   #12
Brian'sMom
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Mark, I was shocked at the lab numbers today. Brian has been feeling great. Not much in cramps, 1-2 stools a day...formed. Gained weight last month and this month and height. I fully expected his inflammation to be normal...That's the only thing off in his labs. My husband wanted him scoped. I'm not sure what to think of this whole day. Now I'm worried about the colonoscopy. I hate that it was prompted by my husband. But he felt that GI was jumping the gun on the methotrexate.

To all: How often are your kids scoped?
03-13-2013, 09:30 PM   #13
Jmrogers4
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We went 3 years between scopes. I know some are scoped more often depending on symptoms. The way our GI puts it is sometimes it is the only way to see what is going on inside especially when labs and appearance don't necessarily match up.
03-13-2013, 09:35 PM   #14
Brian'sMom
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Jacqui, That is nicely put! It helped put my mind at ease. My husband thinks its time to look...we've been thru 3 rounds of Remicade, 2 years Humira...and although his labs were good for first year and half of Humira our son didn't really grow much.
03-13-2013, 09:40 PM   #15
Clash
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C's GI explained it the same way as Jack's GI. We had one a year from the first but for the reason Jacqui just stated, symptoms not matching labs. Hope everything goes well and it gives you a clear picture of how to move forward with treatment!!
03-13-2013, 09:44 PM   #16
jmckinley
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Kathy, My 15 yr old son is taking methotrexate injections. He was on the pills but they made him very sick and he wasn't absorbing them. We switched to the injection and he is now in remission.

The injection is by an insulin syringe. I draw it up and inject it myself. The nurse and a friend taught me how to do it. Ryan gets his shot on Saturday afternoons and takes a zofran with the shot for nausea. He sleeps off most of the symptoms saturday night and is somewhat tired on sundays. But if he wanted to ride dirtbikes or hangout with friends, he still is able. He does go to bed early on Sunday nights so he can get thru monday at school. Overall, we have been very happy with the methotrexate and it has been a blessing (if that's possible to say about a drug).

I am sorry that your Dr is "flipping out". Ours has done that as well when treatments weren't working and we didn't want to just "go ahead" with the next drug. They really want to get the inflammation under control quickly when it starts creeping up to minimize any damage. But it sounds like your Dr went a bit overboard. I know our big blow up smoothed over once we got the symptoms under control and we could all calm down. We also got some input from another GI in the same office, so a 3rd ear definitely helped. I hope the same happens for you. Parent/Child/Dr should be a team and things should be positive, especially in front of the child.
03-13-2013, 09:45 PM   #17
S mom
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My son is on weekly 25mg mtx shots and biweekly Humira shots. He's been on mtx for a year and a half now with no real side effects. It worked well to decrease symptoms for almost a year but they slowly started to come back this past fall/winter. At first we increased his dose from 15mg to 20 to 25 but no improvement so added in humira in Jan. He's had minimal side effects with mtx - seems fine as long as he takes the Folic acid supplement too. Mtx takes about three months to fully take effect from what I understand. He did EEN during that time and that enduced remission.
He does his own mtx shots. He says they aren't as painful as Humira but are harder to do as the syringes aren't preloaded. You have to draw up the fliud from the vial yourself-he's a pro now He has monthly bloodwork to keep an eye on liver enzymes.
I think the GI kept him on it with the humira because it enhances its effect.
Good luck with your decision.
03-13-2013, 09:45 PM   #18
Jmrogers4
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That is exactly where we were at. Felt good the last 3 years but not really any growth and GI felt the only way to know what was going on was scopes. I'm glad we did it and know where we are at now and prep wasn't as bad as the first time partly because he knew what to expect and was able more to rationalize that event though the prep doesn't taste good it needs to be done.
He was also much better day of scopes laughing and joking with the staff since he had already done it there wasn't the same level of fear.
Hope your scopes turn at as well as Jack's, but whatever they show it will give you a bigger picture of what is going on and what decisions need to be made.
03-14-2013, 04:44 AM   #19
Dexky
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EJ gets scoped every year Kathy, but it's partly because of psc issues. Personally, I'm glad of that. I don't like the thought of something brewing in there that the labs may be missing.
03-14-2013, 03:15 PM   #20
Tesscorm
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Stephen was also recently scoped, 1.5 years after his first one but his was mainly due to the change in GI. But, I agree with above... If you have to make changes to his meds, better to have as clear a picture as possible.

And, sorry you had such a frustrating apptmt with the GI. I understand as Stephen's new/adult GI did the same thing at his first apptmt and Stephen left scared and feeling like things were at a serious crisis point! I was really mad and it has certainly coloured my impression of his GI BUT it may be as was said above, GIs just want to get the inflammation under control, they believe they are recommending the best solution and, perhaps, get frustrated and concerned at the consequences when patients/parents hesitate???

Lots of hugs!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
03-15-2013, 01:37 AM   #21
CarolinAlaska
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I don't have any experience in this, but I care about your struggle. I read some great advice here. I bet your GI is just overworked and frustrated with other things that is showing in your encounter with him/her. Hopefully next visit will be much better.
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
03-15-2013, 03:44 AM   #22
Sascot
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Just wanted to wish you luck with the scopes. Hope the methotrexate works great if you do have to go ahead with it. No experience with either med.
03-16-2013, 08:11 AM   #23
AZMOM
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Kathy - Claire has had a roller coaster with MTX but ONLY when they upped the dose. That has leveled off now. We do NOT have two days of nausea. That's a worst case scenario! We, too, were told injection absorbs better than pills. Especially in IBD patients.

Hate that you had such a stressful visit.

J.
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Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
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No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
03-18-2013, 05:24 AM   #24
Dexky
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Good luck tomorrow Kathy! I just wanted to bump the thread so I wouldn't forget!

BTW, KU better look out for my alma mater WKU!! It's gonna be the first ever 16 seed over a 1 seed!! If I am wrong and KU should pull out the upset, I'm gonna be rock-chalk Jayhawk the rest of the way!
03-18-2013, 03:35 PM   #25
CarolinAlaska
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Rock Chalk Jayhawks from the start!
03-18-2013, 08:41 PM   #26
AZMOM
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K - I love you, I adore you, I WILL NOT CHEER FOR KU!

ha ha ha

Go Western!!!!!!!!

J.
03-18-2013, 08:47 PM   #27
superzeeman
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My GI wants me to try it but didnt say a word about feeling sick for a weekend. She mentioned nausea but. Hmmm, Maybe I dont want to be sick like that?
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03-20-2013, 05:37 AM   #28
Dexky
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How did it go Kathy? Anything obvious that they could tell you on sight?
03-20-2013, 09:34 AM   #29
Brian'sMom
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How did it go Kathy? Anything obvious that they could tell you on sight?
Colonoscopy went smooth. I'm glad our GI is the one that did procedure so she got to see things for herself. She's hung to the idea that he's so small cause of small bowel activity...well results of the colonoscopy was uplifting for me. His issue is in the sigmoid colon and rectum. Lots of ulcers and some puss she said. (That's always been the area of concern since he's been 6). The transverse also was a bad area in the past but yesterday she said it looked good. And the rest of large bowel looked good. His terminal ileum looked good (That was swollen in 2010) and she said as she entered small bowel it looked great!! and then from the top entering the small bowel also looked good! So GI was very upbeat about that. Last wednesday she was convinced small bowel was problem so I was sooooo relieved that wasn't the case. (The part she could get to, but he had MRE last Aug)

The Plan is adding acacol and an enema at night that has mesamalamine to treat right where the problem is. He holds it in and goes to sleep. Hope that goes well. (I pictured 'pull ups' but Brian would have NO part of that!!!) (Can't remember the name, pharmacy had to order it and I get it today) Test with labs again in 3 weeks. We hear biopsy results in 1-2 weeks.

Thanks everyone for thinking of us. I hope the plan works and he heals up. I want to ask her...why did this happen when we're doing Humira...but maybe he just flared...or maybe you just have to add to it after awhile. I'll have those answers (if she has them) when we talk about the biopsy results.

And Julie...Oh come on...Can't you cheer a little for KU?!!! For Brian?!!
Mark...Could I be converting you to becoming a little crimson and blue?!

Funny, the anesthesia dr was talking softly to Brian as he was getting ready to go to sleep...the propofol was coming down the line and he said, "Dream of KU winning the championship", he paused and then said, "Unless they play MU, then they'll lose". Just then Brian's eyes shut. I said, "You're honery!!"

Last edited by Brian'sMom; 03-20-2013 at 04:15 PM.
03-20-2013, 09:42 AM   #30
Brian'sMom
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Superzeeman,
I've learned on this forum that the nausea isn't always there with methotrexate. Our GI was being a Debbie downer last Wednesday. She was better yesterday. I remembered we were told azathioprine would cause nausea and when Brian took that back in 2010 it didn't cause any for him.
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