Just took my first dose of MTX, scared out of my mind about side effects

[Shelley]

Hello everyone, I was officially diagnosed with Wegener's (GPA) 10/07/2015 after having 1/2 of my right lung removed in 02/2015 due to a suspected adenocarcinoma in situ (lung cancer). The biopsy on my lung showed that I had Wegener's but my surgeon failed to tell me about the diagnosis, opting instead to say that they had no idea what the abnormalities in my lung were, but at least it wasn't cancer. When I went back to my pulmonologist in 08/2015 for a post op breathing test, he told me about the Wegener's and immediately got in touch with Johns Hopkins Vasculitis Center and got the process started for me to be treated there. I am fortunate enough to live only 10 miles away from Johns Hopkins Hospital. Which brings me to today, I took my first dose of Methotrexate at 9:10pm, while crying my eyes out because I am very scared of the side effects of the meds, but I did it, I took all 6 pills. Here's hoping it isn't as bad as I have made it out to be in my head. Wish me luck. It helps to have a place too come to where people understand.

:scared:

Thanks

[Birdie]

Here's hoping it isn't as bad as I have made it out to be in my head. Wish me luck. It helps to have a place too come to where people understand.

Welcome Shelley,

You nailed it... this is a place where people understand so jump in and ask questions, you're certain to get answers.

Also be less concerned about side effects, doctors don't prescribe anything unless the benefit far outweights the risk.

[Pete]

Hi Shelley,

The good news is that you're probably getting great care at JH. Who's treating you there?

You're taking the minimum effective dose of mtx. I was on dosages ranging from 25 to 15 mg/week (10 to 6 pills) for three years. The only side effect I ever had was fatigue on the day after I took it. I could work through it without much difficulty. However, the fatigue was lasting longer and getting more pronounced this past summer, so my doc switched me to rituxin.

Hope your side effects are non-existent or very mild. Also hope this is calming for you.

[Pete]

Hi again,

Just remembered that hair loss is a possible side effect of mtx. My doc prescribed 1mg of folic acid daily. My hair is a bit coarser, but I still have it!

[JimmyJames]

Hi Shelley,

My experience with methotrexate was uneventful, which hopefully can give you some peace of mind. I was on it for 2 years and other then taking the pills I didn't effect my life. Like Pete I also took folic acid while on it.

I hope your experience is the same and it helps put the Wegener's in its place.

Best of luck.

[mishb]

Hi Shelley and welcome to the forum. You have certainly come to the right place.

I have been on MTX for 4 years and like Pete, I get tired more, the next day and usually have a headache, but normal headache tablets usually clear this up.
I didn't have much hair loss, just a bit of thinning and instead of a spiral type curl, it now has a bit more frizz to it.

The only thing I can really say is, taking this drug/medication, sure beats the alternative of not taking it at all :crying:

You'll be right.

Take care and ........

[vdub]

6mg? No problem at all. I doubt you will feel any different than normal. At 10 pills, you begin to have some side effects, but not at 6. No worries. Best of luck!

Edit: I meant 6 pills, i.e., 15mg. Normally, mtx is distributed as 2.5mg pills in the US.

[mishb]

I don't know what strength 6 tablets is :unsure: surely they are not just 1mg each.
In Australia, one tablet is 10mg so I take two of these

[Shelley]

Thank you everyone for your encouragement and input. I am feeling very blessed to be able to say that the only side effects I experienced were fatigue and a little queasiness. I had myself all freaked out for nothing. LOL. :thumbsup:

[Shelley]

Hi Pete,

I am being treated by Dr. Seo and Dr. Gapud at Johns Hopkins Vasculits Center.

[Pete]

I don't know what strength 6 tablets is :unsure: surely they are not just 1mg each.
In Australia, one tablet is 10mg so I take two of these

In the US, mtx comes in 2.5 mg tabs.

[Pete]

Hi Pete,

I am being treated by Dr. Seo and Dr. Gapud at Johns Hopkins Vasculits Center.

Dr Seo is among the best in the world treating GPA/Wegs. :)

[mishb]

In the US, mtx comes in 2.5 mg tabs.

Yuck, that's too many tablets to have. It takes all of my willpower each Monday night to get 2 x 10mg tablets out of the container and into my mouth :crying:

[MikeG-2012]

I took my first dose of Methotrexate at 9:10pm, while crying my eyes out because I am very scared of the side effects of the meds, but I did it, I took all 6 pills. Here's hoping it isn't as bad as I have made it out to be in my head. Wish me luck. It helps to have a place too come to where people understand. Thanks

What ever you do, don't catastrophize the med side effects that you read on the label of God forbid, the internet. Talk to your doc if you are concerned.

Keep your positive spirits up, you'll need it with this wonderfully awful disease.

[NikkiNicole]

Ding! Here I am, chiming in late. I was on MTX when I was first diagnosed ... and the pills made me queasy so I switched to injections which to me sounded very scary. But, all those did was make me feel lousy. So, never had any major side effects that would be scary or feel life threatening in any way. I hope that all of our experiences helps you. I am on CellCept now (4 pills a day) because MTX still didn't make my symptoms go away. CellCept seems to be following in the footsteps and I am looking at possibly switching to RTX.
Strangely, my "non-life threatening" symptoms are being a monster to stifle.
I hope you find the relief you need soon.

[Pete]

Yuck, that's too many tablets to have. It takes all of my willpower each Monday night to get 2 x 10mg tablets out of the container and into my mouth :crying:

They're itty-bitty little pills. Just toss 'em into your tater trap and have a swig of water... :-0

[annekat]

6 pills in the US is 15mg. at 2.5mg each. Some of us take the whole dose at night when we will notice the effects less while asleep, or we take half at night and half the next day within 24 hours (or is it 12?) I have settled on 4 pills before bed and 2 the next morning. I feel very little side effects unless run down and sleep deprived, in which case I may feel a little queasy, extra tired, or depressed. The effects, for me, have become less and less in the 3 or 4 years I've been taking it. If you feel yucky at first, know that it will get better. You might also be sure to take it with food an drink plenty of water.

[Shelley]

They're itty-bitty little pills. Just toss 'em into your tater trap and have a swig of water... :-0

:lol: OMG, You said TATER TRAP!!!!!!! That's hysterical. :lol:

[vdub]

Yuck, that's too many tablets to have.
At the moment, among other drugs, I'm on 20mg of mtx and 9mg of pred, so I have 8, 25mg mtx tabs and 5 pred tabs (1, 5mg and 4, 1mg). But, as Pete said, they are tiny pills. I have one pill that is really difficult to get down. Its not big, but it starts dissolving almost instantly and it gets stuck in my throat almost daily -- damn thing....

[Birdie]

I have one pill that is really difficult to get down. Its not big, but it starts dissolving almost instantly and it gets stuck in my throat almost daily -- damn thing....

Reminds me of one in the hospital, like a postage stamp that vaporized the instant it hit your tounge, hardly even felt it. Within 30 seconds you didn't care how much pain you were in because the cieling was covered in brightly colored paisley clouds, and pink bunnies, and talking petunias, purple frogs, and Herbie the love bug sitting next to your bed.

[annekat]

Reminds me of one in the hospital, like a postage stamp that vaporized the instant it hit your tounge, hardly even felt it. Within 30 seconds you didn't care how much pain you were in because the cieling was covered in brightly colored paisley clouds, and pink bunnies, and talking petunias, purple frogs, and Herbie the love bug sitting next to your bed. They gave you LSD in the hospital? Wow. But only 30 seconds..... must have been something a bit more special than that.

[Dirty Don]

Probably pill form of propofol...I got it in liquid form...lots of Star Wars stuff & eyes on the wall & changing of the seasons outside my window...what, it's Phoenix!!! LOL

[vdub]

Propofol? Wasn't that the Michael Jackson drug of choice?

I'm going with kat's theory of LSD. You were at the Timothy Leary Memorial Medical Center, right? I think they have a grant from the CIA for laboratory testing. :-)

[Birdie]

Propofol? Wasn't that the Michael Jackson drug of choice?

I'm going with kat's theory of LSD. You were at the Timothy Leary Memorial Medical Center, right? I think they have a grant from the CIA for laboratory testing. :-)

There ya go... no matter how much medical crap piles up ya gotta keep laughing.

Don't recall what it was called, I just know I didn't like it. Talking petunias scare me.

[Jayne 14]

your not freaking out for nothing, it is scary taking all the meds we have too
but here is the best help and support u can get
and fatigue is the main thing at 6 tablets hon
good luck xxx