Scared out of my mind about methotrexate....calm me down please.

okay i'm going to my gi doc to be injected with metho. i'm terrified. i am so scared. please tell me everything will be okay? Anothe thing freaking me out is that i could only get the methotrexate with preservatives. For some reason there is a back order of the preservative free metho. anyone know anything about this. help!

Hey Bella,

I'm sorry you're so anxious about the metho. I started Reimcade at the same time as the metho, so I was more worried about Remicade than Metho. Meds can be scary, any fear of the unknown, but like sr5599 said, maybe this will be the drug that puts you into remission.

I self-inject, and previous to this, I had never given myself any shots. I was freaked out by the idea, but the needle is so small it hardly hurts. The only side effect I noticed was after about 3 months I had a bit of thinning hair, but not much. It stopped thinning about a month ago, but I'm also out of remission now so I'm wondering if my metho was too old and isn't working now. (The pharmacist was confused and gave me three full vials and said I couldn't reuse the vials and had to throw them away after each use. The doctor told me otherwise though, but I don't know the shelf life of methotrexate.)

Sorry, I have no info on the preservative free. I didn't even hear of it until you mentioned it.

But it originally helped put me in remission, so hope it does the same for you. Good luck, it won't be as bad as you're making it out to be. :)

The first time I had MTX, about 3 years ago, I had my boyfriend at the time do the injection. (We did it in the doc's office.) I was so nervous that I actually made myself light-headed and nauseous. (I knew it was mental as it hit was before a reaction to the med would!) Anyway, we got in a huge fight on the way home - he was saying "Well how do you think *I* feel about injecting you?" As if it were harder on him than me! Anyway, that was the end of that! ;-)

Since then I've learned to inject myself. I do daily sub-q shots for my osteoporosis. The IM shot for MTX was pretty easy once I got over the fear. It was the easiest shot I've given myself (including MTX, Forteo for bones and Humira). I refuse to do my own Cimzia shots because it's so thick and there are two of them. Maybe I'll get over that one day too, but ...

we each have our thresholds. Just see how you do with the shot first and on the med. Once you decide if you're going to stay ON the MTX, you can then worry about learning to do the shots yourself. Maybe just take one thing at a time?

Hope it went well!

Thank you for all your advice truly. I had my injection today. GI doc did it. It was not bad at all. He gave me half the dose to see how i would react. Well about 2 hours later i got exrememly tired and fell asleep for two hours... then the nausea set in. I am so nauseated and I have nothing to take for it. and that was only half the dose. What's gonna happen when I get the full dose next week?

well after the nausea and sleepiness wore off i started to run a low grade fever and got really achy after my first methotrexate injection. i felt like i had the flu. wutz up with that. is that normal?

Bella - I had the same flu-like reaction after my first shot.  I had been on oral mtx for 2.5 years and just started injections 2 weeks ago.  After the first injection I could have sworn I was coming down with something, but woke up fine the next morning.  After the 2nd injection I didn't have any issues....I wrote it off as a fluke, but after your post I'm wondering if it's the body adjusting to the med?

Melissa

There are people on this forum who have had a very hard time with the methotrexate and have put up with it for a very long time - months, years - because there was no other alternative . For some of them, methotrexate provided some relief with the Crohn's and rheumie symptoms, and the benefits of being on the drug outweighed the hardship of the side-effects, but the side-effects were still pretty severe. Others had to stay on the drug because there was nothing else available to them.

I think that, ultimately, you are going to have to make a choice. You are going to have to decide whether the side effects are worth putting up with, or whether you're going to stop the drug and live with the consequences.

In short, do you have an alternative? Are you able to try a different drug like Imuran or Remicade instead? Do you only need to stay on methotrexate for 3-4 months to qualify for a higher level drug e.g. Humira or Rem? Is methotrexate the very last medication available to you, because you've tried every other medication and failed / had no response? If so, would you be prepared to put up with these side effects in the hope that they will either:
a) diminish with time (which sometimes happens)
b) improve your Crohn's & rheum symptoms so much that the horrible side-effects are worthwhile?

Even if you do feel backed into a corner right now, you still have some choice in the matter. Ultimately, you are the person who is choosing to stay on the drug or not: you can always choose to stop it and get sicker, though that may not be a pleasant or desireable option for you. It might help you to set a deadline, either personally or in consultation with your doctor, that you will only put up with the side-effects for x weeks, at which point you insist that you and your doc talk and then start actively pursuing other treatment options. If you have this deadline in mind, it might make things easier for you, as you know that this isn't going to be indefinite.

Another thing that might help is to stay on a half-dose of the drug indefinitely. It may well be that you can't tolerate a higher dose: that happens to many people, with various medications.

Hang in there. The first couple of weeks is often the roughest. Remember, you've been injected with a poison: it's reasonable to expect that you're going to feel somewhat poisoned afterwards.

Ivy.

"First day after my metho injection and yesterday was horrible.  Fell asleep for a few hours afterwards and was extremely neauseated.  Then ran a low grade fever and complete acheyness.  Now its 10:30 at night the following day and I am still neaseated and feel like I have a jackhammer in my head all day long.  This frigging sucks."

 

Talk to your pharmacist or doctor about taking folic acid.  I was told that taking it really helps with the nasty side effects of metho injections.  I started on it right away and for the first month I had periods of mild just not feeling good nothing too serious.

Bella, I am in the same boat as you. This is my last resort before they want to take my colon out. I am now on 60mg of prednisone and have had my 4th metho injection last tuesday. I didn't actually notice an improvement until this last one. Before I kinda had some side affects like the tiredness and such. But this last one I must have gotten it in a weird spot because when I pulled the needle out a lot of blood came out too. I got extremely sleepy and I was the same he next morning and throughout some of the day. I have to say I think that one worked because I have been feeling a lot better since yesterday. I haven't really had any "emergency" trips to the bathroom.

 

Brian-I am afraid to give myself injections. I've been going to the doctor once a week for my shot which kinda sucks because he's 35 min away. I just can't bring myself to do it. This was only my second injection and the first one really sucked as far as side effects. Yesterday I had my second one and I was okay yesterday just a little sleepy. Today I am running low grade fever again and tired. Do you take preservative free methotrexate. My pharmacy gave me the one with preservative because they couldn't find any preservative free. The company that supplies it has in on back order.

Sr5599-I've actually had a temp ileostomy. My colorectal surgeon removed a foot of my small intestine. He removed my terminal ileum, my ileocecal valve (sp)? and my appendix although my appendix never did anything to me. Lol. Anyway I'm going to give this drug time to work because I have nothing left to try. I've tried it all. This is my last hope.

Brian-  I do not want to inject myself.  I'd rather have the doc do it.  I'm going to have him do it.  I have a phobia of injecting myself.