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09-10-2010, 07:24 PM   #1
seaofdreams
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Starting on Methotrexate

On Monday I have an appointment with a GI nurse for my first dose of Methotrexate & coaching on how to self-inject.

I picked up the vials on Thursday. There was a bit of messing around because my GI was hoping that he could organise pre-filled syringes which we've since learned isn't possible. Then my local pharmacist wasn't sure of what size/gauge needles and syringes I would need so he couldn't order them but I spoke with the nurse who told me that the pharmacy near my GI clinic sells the right ones. She also said that she'll be able to provide me with the sharps container and alcohol wipes so that works out well

I'm feeling surprisingly calm about it despite having a terrible phobia of needles I took my folic acid supplement yesterday as advised by my GI. I thought it was odd that he wants me to take it a few days before my MTX injection rather than on the same day. Is that pretty standard practice?

I'm really unsure of what to expect. I've been on Azathioprine for almost 12 months (which I stopped taking a week ago) and I found myself experiencing almost no side effects except my hair shed a little more and I burned a little bit more readily if I went in the sun. I'm hoping that my luck continues with the MTX

My appointment is at midday but I'm taking the full day off work on the chance that I don't feel well. I'm hoping that I feel up to working on Tuesday but I guess it's going to be a matter of trial and error. I'm also unsure about whether or not to have my injections in the mornings or at nights to best manage any side effects and to minimise the impact on my work as much as possible.

I would really appreciate any experiences others have had with this drug, both good and bad
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"Never feel guilty for being sick and try to stop comparing yourself and your life to others. You're doing the best you can under the circumstances you have and you're doing great."

Diagnosed with Crohn's in August 2009
Medication: 20mg Methotrexate injection weekly
Supplements: Folic Acid|Vitamin D|B12|Iron Complex|Magnesium Complex|Calcium|
09-10-2010, 07:31 PM   #2
Dexky
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Hi Nicci, have you seen Aura's thread...

http://www.crohnsforum.com/showthread.php?t=11281

I think she's just had her 8th injection. She has received and could probably now give some good advice on the metho!!
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09-10-2010, 07:37 PM   #3
seaofdreams
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Hi Nicci, have you seen Aura's thread...

http://www.crohnsforum.com/showthread.php?t=11281

I think she's just had her 8th injection. She has received and could probably now give some good advice on the metho!!
Thanks, I have been reading through it
09-10-2010, 07:42 PM   #4
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Good luck with it, Metho is an old drug making a come back. Yes, the folic acid really helps and dont forget to take it. I made it til the 14th week, but wasnt working and I had headaches and nausea. That's the bad, for me anyways. But everyone is different. I was not aloud to self inject, which was fine, and I didnt have to pay for it, since it was done in the hospital and they do BP and blood work, and the blood work is imparative.
Good luck and keep us posted, I am sure everything will be just fine!
09-10-2010, 07:56 PM   #5
Aura
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Hi Nicci

Great to find another metho person. I take the folic acid two days before my injection. I also take 4 domperidone anti nausea tablets a day as well. With all this some days I still get the nausea. My nails keep breaking as well, but that is minor stuff really.

I think we need to keep out of the sun on methx as it can makes us feel ill, you may need to watch that in sunny brisbane. Oh how I wish I was there - I like it over there, tired of rain and winter here.

Good luck, keep positive and we are here to help. Let me know how you get on with injecting yourself.

take care
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09-10-2010, 08:02 PM   #6
seaofdreams
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Good luck with it, Metho is an old drug making a come back. Yes, the folic acid really helps and dont forget to take it. I made it til the 14th week, but wasnt working and I had headaches and nausea. That's the bad, for me anyways. But everyone is different. I was not aloud to self inject, which was fine, and I didnt have to pay for it, since it was done in the hospital and they do BP and blood work, and the blood work is imparative.
Good luck and keep us posted, I am sure everything will be just fine!
Thanks (: I would prefer not to self inject but I think I can handle it just once a week haha. I get it very cheaply because I have a health card from when I was on disability payments that is valid for another 6 months or so which is a bonus!
09-10-2010, 08:04 PM   #7
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I am lucky that I get mine free through the hospital system. If you are on it longer than 6 mths will you be able to get it free from the hospital? I hope so.
09-10-2010, 08:06 PM   #8
seaofdreams
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Hi Nicci

Great to find another metho person. I take the folic acid two days before my injection. I also take 4 domperidone anti nausea tablets a day as well. With all this some days I still get the nausea. My nails keep breaking as well, but that is minor stuff really.

I think we need to keep out of the sun on methx as it can makes us feel ill, you may need to watch that in sunny brisbane. Oh how I wish I was there - I like it over there, tired of rain and winter here.

Good luck, keep positive and we are here to help. Let me know how you get on with injecting yourself.

take care
Thanks My folic acid dose is on a Friday and my injections on a Monday so it must be the standard recommendation? I've stocked up on ginger lozenges and tea in anticipation of some nausea, I'm hoping it will be manageable [fingers crossed] My nails break a lot anyway so that won't be too much of an issue :P I'm probably most worried about hair loss although I had very little with the Azathioprine so hopefully that continues.
09-10-2010, 08:09 PM   #9
seaofdreams
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I am lucky that I get mine free through the hospital system. If you are on it longer than 6 mths will you be able to get it free from the hospital? I hope so.
I'm not sure to be honest. My GI is based in a hospital and all of my appointments with him are through the outpatient department so I might be able to have something worked out. Although it wouldn't worry me a whole lot, I should able to claim a lot of it back through Medicare and tax.
09-10-2010, 08:25 PM   #10
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On the Mthx I have not lost anymore hair than usual, but I got a truck load of it anyway. Here's hoping we keep the hair on our head
09-10-2010, 08:35 PM   #11
seaofdreams
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On the Mthx I have not lost anymore hair than usual, but I got a truck load of it anyway. Here's hoping we keep the hair on our head
I have a lot of really thick hair too. The extra molting I did on the Azathioprine was actually a bit of a bonus, my hair was a little bit more manageable lol.
09-13-2010, 12:28 AM   #12
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Just an update: I'm sitting at my parents house after my first Methotrexate injection.

It went surprisingly well all things considered. The nurse had a little practice pad with her but I didn't really want to dwell on things too much so I just got straight into it.

I was so happy to find that the needle was tiny and the injection is only subcutaneous. I didn't even feel the needle going in, I only really had a problem when I had to do the actual injection. I think I did it a little too slowly for fear of doing something wrong so I'll have to keep it in mind to get it in and done as quickly as possibly next time haha. I swear I could feel the Methotrexate dispersing after the injection, kind of like a burning feeling but the nurse reassured me that it's a psychological thing more than anything.

I felt a little wobbly and the room started spinning when I got up to wash my hands but I think that was more of a build-up of anticipation than anything. The worst part was I've had D this morning and the stress of the appointment seems to have triggered it while I was there so I spent the next half an hour on the toilet in the clinic

The site where I did the injection is looking fine too, just the tiniest little needlemark. I was worried that there might be bruising or yellowing but it doesn't seem like there are going to be any visual marks or swelling. I didn't seem to have any medication "leakage" as some people say they get.

I'm feeling really positive about the Methotrexate, I'm looking forward to a few weeks time when I will hopefully start seeing positive effects and when my Prednisone dose tapers right down because it's really messing with my head at the moment.
09-13-2010, 01:17 AM   #13
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Hey Nicci,

I hope things continue to go well. Keeping my fingers and toes crossed that the Meth does the trick..............



All the best,
Dusty
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09-13-2010, 11:45 PM   #14
seaofdreams
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Thanks so much Dusty
It has been more than 24 hours since the shot and I have felt perfectly fine. Not a hint of nausea or fatigue. I'm amazed! Fingers and toes crossed that it's this easy next time around
09-14-2010, 12:46 AM   #15
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YAY!!!

Dusty.
09-15-2010, 08:48 PM   #16
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Hey, glad to hear your doing fine with your first shot of metho. Hopefully it works wonders for you.
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09-15-2010, 10:03 PM   #17
seaofdreams
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Thanks Zalanicht ^_^ I'm feeling really positive about it so I guess it's just going to take time to know for sure if it's going to work for me or not
09-20-2010, 06:59 AM   #18
seaofdreams
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Second injection tonight, the first one I had to do by myself.
I was so nervous that I was going to mess something up that my hands were shaking. I got too many bubbles in the syringe so I had to try to get them out and ended up dropping it on the floor :/
Luckily I had some spares and finally ended up getting it drawn up without bubbles, yay.
It took me three jabs to actually get the needle in because I was being too cautious, now my tummy looks like a pin cushion hahaha.
All in all, it went well. I think things will be much smoother next time around now that I'm feeling a bit more confident in my ability to do it myself.
I'm hoping that I'm as lucky as last time and don't have any side effects. I'll keep you guys updated
09-20-2010, 07:12 AM   #19
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Wow, way to go Nicci!!! For someone with a needle phobia you are doing fab!!!

Good on you,
Dusty
09-20-2010, 07:22 AM   #20
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Hey Nicci, it gets easier everytime. When I was on Humira it was easy but I dont have a fear of needles, had too many in my lifetime. My metho and b12 shots were done by a professional, they wont let me do my own... but my metho is done, now just b12 once a month. You are doing great, don't worry, everytime gets a bit easier!
09-20-2010, 07:36 AM   #21
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Hi Nicci,

I've been on methotrexate for about 2 years now with no major issues, but I find it interesting you're unable to prefilled syringes, as my local public hospital refuses to provide them in any other form for safety reasons. A private pharmacy however is unlikely to want to bother doing them prefilled, since there's no requirement to do so on the PBS.

I've always got my GP to inject the methotrexate which costs me $2 or 10 a week depending on where I am on the medicare threshold, the DSP/HCC does help a bit. I trust you've been taught how to make sure you don't spill any of the methotrexate fluid, as it is cytotoxic and not something you want to subject anyone else to, even in small amounts.

Keep an eye on the side effects (eg tiredness/fatigue and perhaps nausea - the most common and only issues I've had) for the 24-48 hours after the injections until you get stable on your current dose, but here's hoping you're one of the lucky ones that have virtually no issues just make sure you keep up the folic acid every week, and of course don't drink more than a glass or two, mtx doesn't play nice with the liver

Best of luck, I hope mtx is the answer you as it was (mostly!) for me,

Stefan
09-20-2010, 01:11 PM   #22
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Stefan, Have you had a liver biopsy? Do the recommend it for you? My husband has been on metho injections for nearly a year and the Dr. is now talking about doing a liver biopsy.
09-20-2010, 04:42 PM   #23
seaofdreams
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Thanks Dusty and Pen!
I'm still feeling great this morning. No fatigue or nausea at all!

Stefan Thanks for the advice (:
I wish I could get prefilled syringes but the hospital where my GI is based doesn't keep MTX in stock and the pharmacist won't do it for me.
I was very careful not to spill any of the fluid and did my filling over the bathroom sink in case I did haha. I wouldn't want to put my housemates at risk, as much of a pain as they can be at times :P
And I haven't drank for three years so no worries there :P
I'm just curious, my pharmacist made a mistake initially and wrote the dose wrong on my label. I'm on 20mg and he wrote the dose as 1.25mL but then called me and advised me that it is supposed to be 0.75mL. Now I'm a little bit paranoid that the dose is wrong (the prednisone probably isn't helping the paranoia haha) Is this the same as what you are on?
09-20-2010, 10:31 PM   #24
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Thanks Dusty and Pen!
I'm just curious, my pharmacist made a mistake initially and wrote the dose wrong on my label. I'm on 20mg and he wrote the dose as 1.25mL but then called me and advised me that it is supposed to be 0.75mL. Now I'm a little bit paranoid that the dose is wrong (the prednisone probably isn't helping the paranoia haha) Is this the same as what you are on?
Assuming at 25mg/mL as used in the 50mg/2mL ampules on the Australian PBS: the 'normal' dose for IBD is usually 15 to 25mg (0.6 to 1mL). I'm on 20mg (0.8mL) as we started on 10mg and scaled up until we found I couldn't tolerate it any more (ie 22.5mg was too much for me)

0.75mL @ 25mg/mL = 18.75mg which is a fairly normal dose
1.25mL @ 25mg/mL = 31.mg which would be by far the highest does I've heard for IBD

Also, something that you may want to keep in mind if your GI hasn't already mentioned it is whether you decrease the dose when you've got an unrelated virus/cold, as a dose of mtx when you're actively fighting something can knock you about a bit. If you haven't had any issues yet, and haven't discussed it with your doctors, it might be best to just wait and see ie I wouldn't decrease the dose without checking

And no PG, I haven't had any mention of a liver biopsy, but my LFTs (Liver Function Tests) have always been perfect so far too
09-21-2010, 02:16 AM   #25
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Stefan you write some very interesting points, thank you, I am learning a lot. I had a cold on the weekend I did not no about asking to lower the dose. But I have kicked the cold now, fastest ever for me. I have an 10 injections at 25, another 6 to go and then I go to a maintenence dose.

Seaofdreams, well done you for doing the injections. I'm totally impressed that you had to do your own syringe - I would shake too much for that. Congrats for getting the needle in. Good luck and keep us posted.
09-21-2010, 02:30 AM   #26
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Stefan you write some very interesting points, thank you, I am learning a lot. I had a cold on the weekend I did not no about asking to lower the dose. But I have kicked the cold now, fastest ever for me. I have an 10 injections at 25, another 6 to go and then I go to a maintenence dose.
No problem, glad to help

Just to clarify, if you have had no problem with the standard dose with a cold/virus, there's probably no reason to lower the dose. However, if you find it knocks you around a lot (eg for me I basically slept for a day) then it's something you might want to talk to your doctor about. If you don't typically feel the side effects of mtx, or you're not already feeling under the weather at the time of the injection, if's probably not an issue.
09-21-2010, 03:33 AM   #27
seaofdreams
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Thanks for that Stefan, I think the pharmicist still has it wrong because my GI wants me on 20mg. I'll ask him when I hate an appointment in a few weeks.
Thanks Aura, I'm still feeling great. I even went for my afternoon run today and feel fine
I'm glad you've recovered from your cold so quickly!
09-27-2010, 05:42 AM   #28
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Third shot tonight, still hesitating too much with inserting the needle and getting multiple "stab wounds" hahaha.
I'm getting so much more confident with doing the shots though
09-27-2010, 07:06 AM   #29
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Good that you are doing well Nicci, I really hope this drug puts you into remission. I dont worry about the needles. Mind over matter, if you dont have a mind it doesn't matter..

Good luck!
09-28-2010, 12:28 AM   #30
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Hahaha, thanks Pen
I just had my first follow up appointment with my GI and he's really happy with how things are going since I started on the MTX.
He also said that because I'm responding so well to the Prednisone, it indicates that the narrowing he found in my last CT is from inflammation and not scar tissue which means I can get away with not needing any surgery for awhile yet
I'm getting my first lot of blood tests next week and my GI also wants me to go in for a bone density scan although he's confident that things will look good
Still not a hint of nausea or fatigue. Although I won't know for sure how it's going until I start tapering down off the pred, I'm feeling really great on the MTX
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