Methotrexate

[LJS]

My 9 year old son will be switching from Azathioprine/allopurinol to Methotrexate via subcutaneous injections (given by me.. oh yeah..NOT!).

With the young male/lymphoma connection, I want him off, as he's been on Aza for 2 years now..

We will likely start in another week or so.. any suggestions? I don't know much about it and would love to hear your thoughts. My son is doing EN nightly, eating what he wants during the day, for the last 2 weeks.

thanks!
Lin

 

[jmckinley]

Sounds like your son is doing pretty well if he can eat what he wants. That's great! I don't blame you with the lymphoma concerns. My son (15) is also on methotrexate injections. It has been working pretty well. Here are some tips that we have learned:

1. Folic Acid supplement daily except day of shot (helps with nausea)
2. Ryan is very tired and not hungry for about 2 days, so we take the shot on Saturday afternoons.
3. Zofran is a lifesaver. Ryan takes it about 10 minutes before the shot to help with nausea.
4. Alternate injection sites...fatty part of leg, back of arm, some do it in stomach. We have a problem in his right leg now, so move around.
5. Use a small needle like an insulin syringe.

I think that's it for starters. I am sure I have missed something. Someone will be along to tell you what I forgot!

Good luck with the switch!

 

[Clash]

I don't have any advice as far as injections go but just wanted to send my support. I hope all goes wells!

 

[my little penguin]

Do it early afternoon ( right after school) so he will sleep though most of the fatigue that can happen.
We used buzzy bee last summer- it helps with the pain of the shots.
Have the nurse demo but you actually do it in the office so she can tell you what you did wrong.

Good luck

 

[LJS]

Thanks, all. SHould I ask for a zofran script preventatively? And what is buzzy bee, mlp?

 

[crohnsinct]

Yes, definitely get the script up front. Our doc actually offered it up front although our daughter hasn't had a problem with nausea...probably because we go the Zofran...if we didn't she would be throwing up all over...darn Murphy's Law eh?

 

[my little penguin]

http://www.buzzy4shots.com/

That is buzzy

 

[AZMOM]

LJS - Claire turned 10 yesterday and most often, injects herself. . She experiemced very mild nausea at the beginning. It subsided after a few injections. It does make her tired the next day.

At the Hosp, her GI had us administer one Benadryl and some Tylenol one hour prior to injection. We don't follow that protocol 100% of the time but it does seen to help.

We do her injection shortly before bedtime. We pick a weekend night that we can work in some quiet time the next day. Sometimes she'll sack out for a nap - sometimes not.

You'll figure out what works best for you.

Our GI did offer zofran but wanted us to try. We just didn't find that we needed it.

J.

 

[S mom]

My son's been on it for a year and a half - no nausea or anything - just make sure he takes the folic acid. He really liked to put ice on at first (he's so used to it he doesnt bother now) - said he could hardly feel it when he 'froze it' . Hope you have the same good luck with side effects we did!

 

[LJS]

Can i get buzzy from walgreens, or do I have to get it from the hospital or ???

 

[Marni's mom]

Marni take Methotrexate orally in five little pills once a week. Why the shots? Is there a specific reason your kids are taking injections over oral Mx? Just curious. Marni takes Humira shots, so maybe that's why? Were pills offered as an alternative? She doesn't get nauseus or tired with the Mx the way she takes it. Just wondering if pills are an option for you all.

 

[AZMOM]

Marnis Mom - the issue with pills is absorption in someone with a compromised GI tract. MTX is absorbed more quickly by injection and can "get to work" more quickly that way. If you have a kid with inflammation, malabsorption, etc that doesn't help the situation either because they get even less of the drug.

Im sure someone else can be more eloquent on the subject but that's the "Julie version" of how it's been explained to me .

J.

 

[crohnsinct]

^^^ me too Julie...plus our doc said injections = less nausea, dizziness and headaches etc but I have seen people get sick on injections also...but I think it is less likely. O takes pills.

O went up in dose last night (on school Washington D.C. trip) and she texted me this a.m. that all is A.O.K. Yippee! The thought of her nauseous on a 6 hour buss ride home was making me nervous.

 

[LJS]

OK, here are a few questions I have for you great ladies!!

1. MTX vs Aza - thoughts?
son has had zero side effects being on aza for 2 years. my concern has been the
link to lymphoma, hence the switch... but i'm concerned about all the side effects
with mtx, since we haven't had any with any of his other meds

2. Folic acid: how much? My son gets 140 mcg in his multivitamin (gummy chewable) daily - should I add more?

3. zofran - will get script ahead of time
4. buzzy - where to get?

The plan is to start on injectibles (absorbs better/faster) and then perhaps, depending on how he does, switch to pills in 2 months or so...

I'll have to plan well on when to give him his injectiions.. he's on the swim team which starts up next week, and meets are every saturday starting first sat in june.. so maybe saturday afternoons.. aah, so much to think about. I wish that we could stay on aza but I'm so worried about that lymphoma connection..

 

[crohnsinct]

O.K. running out the door but thought I would throw this out there. Not sure of the risks of Lymphoma with Mtx (I have read sooooo many risks) BUT if there is a risk I know it is low. Low also with the Aza. The risk that concerns me with Mtx is the risk to the liver. Also, still relatively low and if damage occurs you can come off the mtx and be ok BUT the risk of liver damage on mtx is a lot higher than the risk of lymphoma with Aza. There are also various cancer risks with mtx.

Have you discussed your concerns with the doc? Do they feel the risk profile of mtx is so much lower than aza that the switch is worth it?

I guess what I am trying to say is be careful you are not jumping from the pot to the frying pan. Also, if you have something that works why not keep it? From what I have read here it is only a matter of time before the drugs stop working and you have to move to another anyway so why burn your bridges if you don't have to.

Sorry I am babbling as I am trying to head out the door and it has been a long while since I read the risk profile for aza but I do know that given the choice upfront many parents choose mtx.

There is an awesome thread with a link to a transcript of a webcast from CCFA with a doc discussing the risks of all meds in very real understandable terms.

When I get back I will try to get that for you and answer in a more intelligent manner.

 

[LJS]

Thanks.. I too am so confused about which way to go... i hate going from frying pan and into the fire.. not sure that aza is working, as inflammation has never really gone away, but my son was mostly asymptomatic, except for on/off again stomach aches/throwing up, for 2 years.. but the frequency increased and labs showed pretty high inflammation. That, wtih not growing at all in 2 years, led to the biologic discussion (remicade/humira) but I countered with trying EN first. So that is what we are doing, but doc also wants to switch to mtx...

 

[Clash]

So, in your son's case, LJS, your doc is just switching from one immunosuppressant to another, AZA to MTX. The risk profile for both these drugs includes cancer risks as well as other side effects.

Switching to MTX is probably a likely choice if you are unwilling to move on to the biologics at this time. Some people do experience side effects, nausea, fatigue, flu like symptoms from MTX but I believe people can experience those symptoms with AZA as well so I guess the meds just affect people differently. My son takes the pill and folic acid every day. He has no side effects of taking his med that he has noticed.

As far as folic acid, my son's px is 1mg, I believe.

You can google the buzzy bee and it will take you to the website to order them from. You might can see one in action at your local hospital if they have them but the website also has videos of them being used.

I hope that your son finds remission soon.

 

[crohnsinct]

Another swimmer on the forum!!! HOLLA! My crohnie is a competitive swimmer and there are a few others. She swims 2 hours a day 6 days a week. It has been great for her and we use her times as a barometer as to how she is feeling.


http://programs.rmei.com/CCFA139VL/start.html

Here is that webcast that I found extremely helpful when we were faced with the decision to add something to my daughter's Remicade treatment. Unfortunately, I poured over all the data and finally came to terms with adding Aza and the doc said Mtx. I wouldn't approve the Mtx because I hadn't yet done my exhaustive mommy research on it and asked about EN. Luckily he was very supportive of EEN (don't ask me why I had to be the one to bring it up as an option). So we all decided EEN for 6-8 weeks and if EN failed we would move to Mtx or Aza. EEN was just the boost the Remicade needed to get her into remission where she has stayed ever since. I wish your doc would give the Exclusive EN a chance. It might be just what he needs.

We only recently added Mtx to clear the Remicade induced psoriasis which is mucking up her blood work. Like I said before, the liver issues scare me way more than the lymphoma risk but at least we can test and respond so I accepted that risk.

Sounds like Aza isn't really working all that well for your son and that may be why the doc suggested Mtx.

I have to tell you while the biologics scared the begebees out of me when she was first put on them all meds on the table I would pick a biologic. Almost no side effects and while the risks are scary they are low. Compliance is assured (well until they start driving themselves to appointments) bloods at infusion so you get regular feedback with fewer pokes and more convenient.

Have you looked at LDN as an option? It is supposed to have the most minimal risks. Check out the treatment forum for some threads on it. Unfortunately though there are not a lot of ped GI's who are willing to try it but you owe it to yourself to check it out and ask at least.

I hope the presentation helps you. It doesn't include Mtx but like Clash said they are very similar in risk profile so.....

Good Luck with your decision!

 

[Jmrogers4]

LJS
We switched for a short time for Aza to Mtx per his GI as he (his words) "like to pull my teenage boys off Aza if there is another choice" sited the increased risk for teenage boys but at the same time said it was really a very small risk. Said he could look at it as a doctor and think it is such a tiny risk that it is almost not worth considering but looking at it as a parent was another story. Jack ended up having a reaction to Mtx and couldn't take it and went back on Aza for another year at which point his GI suggested trying LDN as there was no increased cancer risk.
Jack has been on it for 10 months and (touch wood) is currently in remission.

 

[Johnnysmom]

Just wondering....

Did your GI's suggest making a med switch because of the cancer risk or is it something that you as parents decided you wanted to do?

I was also under the impression that 6mp, Aza and Methotrexate all had the same risk, is this true?

 

[AZMOM]

LJS - Your questions......

1. Some livers tolerate some drugs better than others. Claire's revolted while on 6MP (AZAs cousin). So far, her liver likes MTX.

2. She takes 1mg folic acid daily

3. No zofran or buzzy bee at my place. I'll be calling you if I need them. ;-)

Hope the transition is smooooooooooooottthhhhhhhhhhhhhh!!!!!!!!!!!

J.

 

[crohnsinct]

O.K. I didn't answer your questions.

1) MTX 10mg weekly by pills - hasn't experienced any side effects. Watching liver closely as my mom has auto immune hepatitis and hubby has fatty liver. Also hubby is diabetic and the mtx and psoriasis raise that risk slightly. Doc still felt mtx a good option.
2) Folic acid every day 1 mg. Some people take Folic every day except dosing day.
3) Zofran prescribed and filled but haven't needed it yet
4) No buzzy bee she is a pro with shots, iv's and such...just has a hard time with pills.:ymad:

 

[LJS]

thanks everyone.

Interestingly, I asked my doc about LDN and he said there is not enough information on it and they are not prescribing/using here at Children's.. so frustrating, you know?

I'm really torn about mtx.. when doc calls me next week, I'm going to talk to him about it.. i wanted son off aza but the more i hear about mtx side-effects, the less i want him on it.. I hate this!!

 

[crohnsinct]

Having a good long talk with the doc about every option is a great idea.

Here is something to keep in mind though and ask doc about. Is the decision to switch set in stone? Is it possible to go ahead and give the mtx a try and if it is horrible go back to Aza?

I probably didn't think of that because my daughter is on Remicade and with that drug once you start and it is working you don't hop on and off. Once you go off coming back to it is difficult because of the build up of antibodies and allergic reaction with the scond try. Even this doesn't happen all the time but enough that our doc says stay on until you absolutely are sure it is not the drug for you.

Perhaps the move between Aza and Mtx is easier. The one thing that would get in the way of this is the time it takes for both drugs to get to thereupeutic levels or start working. I know we were told 12 weeks before we could determine if mtx is working. Too many of these switches and you are possibly leaving your child undertreated for a good amount of time...unless they use another drug for the "build up period"

O.K. what a rambling day I have had. Sorry.