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New member - i need advice :-((((

C

Cool

After doing an enormous amount of tests in 2012, I was diagnosed with a minor case of Crohns. However I still had to treat it with Methotrexate.
It started with injections. Being that I am super skinny, finding fat on my body was always an issue and caused my injections to be uncomfortable. At the beginning I was able to handle it but after a while I couldn't do it anymore. I was so sick of it. I used to love the smell of rubbing alcohol and now immediately become nauseous when smelling it. The injections continuously made me nauseous, sick and mad. I would lose two days of the week because of it.
When I turned 18 I was allowed to explore other ways to take the medication and when I found out I can take it in pill form I was ecstatic. I started out with 6 tablets. Like the injection, at the beginning it was simple, but quickly I would rage due to the fact that I had to deal with losing two days of my week. The pills seemed like they didn't change anything. My doctor lowered my dosage to 5 pills thinking that it would help me but he clearly didn't understand what I was going through.
I can't put a pill in my mouth without associating it with nausea and MTX..
I can't drink orange juice anymore without associating it with nausea and MTX..
The list goes on..
Week after week I would yell at my mom about how I can't take it anymore!
I decided to take 4 pills without my doctors consent, but nothing changed.
It got to a point where I had enough of it. I am now 19, almost 20, and I'm tired of dealing with it all so two weeks ago I stopped taking my methotrexate. It's about to be three weeks now. I haven't talked to my doctor at all about it.
Is there anything I should be concerned about.
Please give me feedback about stopping this medication and if it's ok. :stinks:
I need to hear from other people.
 
FrozenGirl

FrozenGirl

There wont be any immediate effects likely but there is a good chance you could flare. Talk to you doctor, at least to inform them what going on. Is there any way you could try and disassociate the side effects with the MTX? Would anti nausea meds possibly help?
 
FrozenGirl

FrozenGirl

Could you have some else disguise it for you, like put it in food? Or take something for nausea and tell yourself you are fine and can't get sick now. Good luck!
 
greypup

greypup

Location
St. Louis, MO
It's great that you are posting and wanting to help yourself. Dealing with CD and all of these feelings can be overwhelming.

I think it would help you a lot to talk to a cognitive behavioral therapist. A good one can help you move past these feelings. Your GI doctor might have a recommendation on who to contact.
 
W

Whit

Cool,
I had the same problem. I was diagnosed after a visit to the hospital emergency room by CT scan etc and later met with a GI doc who put me on meds that made me really weird. After 9 months I quit the meds and two months later was in the emergency room again with a partial blockage due to a flare.
During the time I was on the meds I was angry and in denial and like you my whole lifestyle was changed.
The short story is that after the second emergency room visit I changed docs and with his approval and referral met with a family counselor (psychologist) who really helped me deal with my rage, denial and inability to change my diet and eating habits.
I am now injecting methotrexate and like you, I loose a couple of days each week but I use those days to read or take life easy. I will say that I am doing well and my doc has lowered the dosage over time and the side effects are less. I want to, in the near future, keep lowering the dosage to zero if possible and if I do and feel a flare coming on, the doc has suggested starting prednisone and of course calling his office.
So I would ask about getting a prescription for prednisone to have for emergencies and getting a referral to a family counselor since you are going to have a long life dealing with this disease.
My best to you
Regards,
Whit
 
C

cam129

I really don't think you should stop taking it without discussing with your Dr. Your Dr is there to treat you but also takes quality of life and your concerns into consideration.

I take Methotrexate and Humira. The Methotrexate injection I take weekly and it make me feel very nauseas, lethargic and farigued for a few days after, especially the day after.

I was told anti-nausea medication would not work but I do take Folic acid and I increased the amount I take, which helped somewhat but I still get the side effects.

On Friday evening (when I have the injection) when I even think about the injection, when I even pick up the injection I get a shiver down my spine and start to feel nauseas. It isn't great but it is keeping my Crohn's at bay. Crohn's symptoms are still there just not as intense.

I have had similar thought as you, after being diagnosed and with the medication I stated suffering with depression and having dark thoughts, I have recently started anti-depressants and hopefully they will help as I am feeling quite low at the minute, trying to hold back the dark thoughts.

I think if you discuss this with your Dr you will find something that will suite you.
 
N

northwesterner

I took MTX both orally and as an injection a couple of years ago.

I could not tolerate it, at all, in pill form.

As an injection, I didn't have trouble for the first six months or so. I would be nauseas the next day, but could handle it. The injections were no problem.

However, from the 6 month point until I discontinued at about a year (it worked pretty well regarding my disease, by the way), I had a very strong reaction to the injections.

Not a reaction like shortness of breath, breaking out in hives, etc but a total an utter inability to bring myself to give the injection. My body knew that the injection was going to make me feel terrible, and put up all kinds of psychological barriers to pushing the injection.

You know, the kind of barriers that keep you from, for instance, jumping off a bridge. Whatever that self-protection mechanism is, it activated for me and my MTX injections.

When MTX became hard to source in the United States a few years ago and I got out of the habit of taking it, I just couldn't get back on the wagon. It was too hard to get everything ready. I would sit in the bathroom for hours, shaking, trying to bring myself to get the kit out. What a mess.

I finally switched to Cimzia, which is also an injection. As it doesn't make me ill (and it is a slightly different injection, being subcutaneous instead of intramuscular), I'm able to injection without issue, and have been doing so for two and a half years.

You're not the only one.
 
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