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

**Shelley** · 11-07-2015, 03:19 PM

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.

Thanks

**Birdie** · 11-07-2015, 03:58 PM

Originally Posted by Shelley

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** · 11-07-2015, 04:07 PM

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** · 11-07-2015, 04:28 PM

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** · 11-07-2015, 04:55 PM

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** · 11-07-2015, 05:56 PM

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

You'll be right.

Take care and ........

**vdub** · 11-07-2015, 06:12 PM

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** · 11-07-2015, 09:38 PM

I don't know what strength 6 tablets is

surely they are not just 1mg each.
In Australia, one tablet is 10mg so I take two of these

**Shelley** · 11-09-2015, 11:52 AM

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.