[Jenkay]

I started methotrexate today and after doing a lot of research I'm looking for real world knowledge.

If you have taken methotrexate: how long did you stay on it, did it help and at what dose, did you have any serious side effects? I guess I'm scared off by all the listed side effect (the ones that sound fatal) but it seems like the drug is used quite a bit for lupus.

My doc has been wanting to start metho or imuran for a year due to symptoms so when my labs went up the past couple months she strongly advised me to give methotrexate a try.

Would love to hear from you.

Jen

 

[calkim]

Jen,
I have been on Metho for about 2 years. I started off at 12.5 and now take 15mg weekly. (pretty low dose) I too, was afraid of all the side effects, but found out, for me it was minimal. At first, I was tired and sometimes didnt feel that great, but it never really was like a bad flu or anything. I had much worse symptoms from Imuran(severe vomiting and diahrrea 15 min. after taking each time)
What is your dose? Oh, and the other thing, some docs say to take Folic Acid with it. I have taken Folic acid daily 800mcg for years. They say it helps with the side effects.
I havent really had any lupus symptoms for quite a while. I also take pred(4mg)colchicine.6mg(both anti-inflam)I do have recurrent pericarditis but it is without lupus symptoms, and maybe due to dependancy of anti-inflammatories.
Good luck with the Metho, everybodys different, hopefully you will tolerate it well.
Kim

 

[LolaLola]

I have been on Metho for four years or more. I would recommend it, maybe the first three months can be difficult but even then some weeks I seemed to take it better than others.

It really is a big help. Don't forget if you have terrible symptoms you can self inject instead of tablets. I am fine with tablets.
x Lola

 

[Jenkay]

Thanks for your responses, I started on 7.5 and will go to 12.5 after my next dose. I'm not sure after that but will see my rheumy and she'll let me know. Things have been pretty bad lately so it was time to give this a try. Just some waves a nausea yesterday but not too bad.

Thanks again.

 

[KiwiJen]

Hi Jen.

I've done methotrexate for 4 weeks twice. I can't stay on the drug much longer than that. After that it just rips my stomach to shreds.

Please be careful with MTX and your sun exposure.

I got a horrible 2nd degree burn across my chest from some sun exposure despite wearing a longsleeve tshirt.

Good luck. I hope it helps you!

 

[tbunny1]

I started taking Metho orally about 4 months ago. The first week, I stayed in bed. Next few weeks, flat on my back for a few days. After that, I just had terrible fatique about 24-48hrs after taking it, and then started having some really good days 4-5 days later.

I stuck with it, and boy what a difference! I am so happy I hung in there with it. I did change from oral to injection, to bypass all the stomach upset. Anyone else who gets stomach upset with oral metho, try the shots. It's not as bad as you might think doing the shots, and it will bypass your gastro system completly.

I take my shot on Tuesday, and have my best days coincide with the weekend!

 

[LolaLola]

Tracy, I am glad Metho suits you. Like you I am very glad I stuck with it.
x Lola

 

[Jenkay]

Thanks to everyone for the feedback. I took my first dose Monday 7.5mg and have had tolerable nausea this week which gets less each day. I take 7.5 again next week and then 12.5 the third week (I quite curious as to how that will go but I'll keep in mind the injections - tho I don't think I could do them myself).

For those of you who have stayed on it does it mostly help with pain or does it help will many lupus symptoms??

Again, thanks for sharing.

 

[LolaLola]

It does help me all round and also reduces the dose of steroids you may need.
x Lola

 

[mooks]

hey jen i have been on mtx for over 2 months now..i havent tolerated it that well...tiredness, nausea, stomach pain and bad headaches but my bloodwork is looking great with my complement levels and esr in the normal ranges for the first time well over a year! i think even if there are side effects to begin with its worth sticking with it,...im hoping mine will go away. Just a quick question to anyone else reading this...how do you get put on the shots?! ive asked my rheumy twice and he said no as i havent been on it long enough yet?! grrr xxx

 

[Jenkay]

Great information from everyone, I do 7.5 again tomorrow but it is the following week that I increase the dose and I hope the nausea doesn't get too much worse. We'll see. I'd have to say my joint pain seems to be less than the past month and I've only had one dose. Seems too soon for results but I'll take it.

Jen

 

[Jenkay]

Well it has been 6 weeks and the past two weeks I took 12.5 mg and they didn't go too well, actually last week was a nightmare, sick and exhausted, faint and couldn't do anything for several days.

Spoke with doc today and she is having me drop back to 5 mg for a couple of weeks then go to 7.5 and hang out there for a while.

I'm glad I came back and read this post as it seems others had troubles in the first few months.

My kids are home for the summer now so it is not an option to have 4 or 5 days a week where I can't do anything.

Continuing to be hopeful. Jen

 

[LolaLola]

Jen, I can only encourage you to stick with it. If you can do the first three months you will be laughing. It is difficult I know.I am not minimising the fact that it is unpleasant, but it can be done. I found it worth it.
x Lola

 

[Cavmom]

I have been taking methrotrexate over 6 years (15 mg) one time a week. I have had no problems with using it. I have blood work every six weeks so that my liver function can be checked. I was so happy to go off prednisone when I started methotrexate, I didn't care how I reacted.

 

[Raglet]

Iccckkk ! I hated the stuff, made me very ill BUT many many people do really great on it.

So, it is definitely worth a try, as we are all different. My dad loved the stuff and was on it for many years

best of luck with it

raglet

 

[pukekos]

Hi,
I have been taking metho for almost 6 years now. I started at 25mg and felt horrible for months but things got better and I felt better too. I would recommend the shots. I HATE needles but found it was much better for the stomach and actually worked better when injected. My hubby does my shots. I now take 10mg and am hoping to reduce to 7.5 soon. I found it is very important to take folic acid. I take 1mg per day ecept on metho day. Taking folci acid on metho day can reduce it's effectiveness.


good luck
Pukeko

 

[dudley]

Hi
I was on metho for about 2 months. I started with the pills but switched to injections. They injections were much better on my stomach.

Blood work ALT and AST going up to nearly 200. High norm was 40 with my lab.These test are for the liver. To make a long story short had to go off metho, had to have a liver bio and on a drug for rest of life to protect liver. Make sure doc test liver every month. I am now on cytoxin. it is the strongest chemo but the least likely to effect liver but can cause other serious problems.

Elaine

 

[dawn_holmes]

Mtx

Hi i've just started this med, only been on it for 3 weeks and still no change,early days
will tell how i get on

 

[nancyr64]

metho,imuran,or pred

My rhuemy has expressed his concern over my ongoing battle with pain in my wrists/hands and feet/ankles. It is getting worse and I am afraid to call him. Its moved into most of my joints now. I am miserable but he also has brought up the subject about putting me on steroids again.That I cannot face, I did not have nice side effects with them last year. When did your doctor decide to go with the metho? I will be making a call to my dr and was wondering what all of your experience has taught you?I am currently on plaq,celebrex,lyraca,and flex.
nancy