Methotrexate : /

General
1

Hey everyone, I know the topic of the meds and side effects have been discussed many times over and over, so I don’t mean to beat a dead horse here, however I just wanted to get people’s opinions on methotrexate specifically.

I believe I have an un-natural fear of this drug and I’m not sure why. Long story short I was put on sulfasalazine and ended up being allergic to it. So my Rheumatologist just proscribed methotrexate. He said his goal is to get me on a biologic as soon as he can. He even told me that if it was up to him he wouldn’t have me on the MTX but my insurance requires me to fail 2 DMARDS before allowing me to take a bio, so he is going to put me on for 6 weeks, and if I don’t have a huge improvement attempt to put me on a biologic. He even said if I wanted, he would take me off the MTX and put me on a bio only.

Anyway here are my specific concerns about the MTX. I have has asthma all my life, so I have always been concerned about my lungs. My #1 fear of MTX are the Pulmonary risks. I know is some cases it can cause pulmonary fibrosis which is not reversible even in low arthritis doses. Does anyone know how likely this is? I realize this is rare, and I know my fear of the drug is unnaturally high, but for some reason I can’t seem to get past it.

Also my doctor said that recent studys have shown that in PsA specifically MTX may relieve symptoms but may not actually slow the progression of the disease like Biologics might… Has anyone else heard this?

Bottom line, I guess im concerned about taking the MTX especially since my DR said if it wasent for insurance, he would just put me straight on a biologic and skip the MTX. I feel like im taking an unnecessary risk. Is that crazy of me?

I have been speaking with a close friend of mine, and they suggested if I was this worried, to just wait out the 6 weeks and say I took the MTX so I could be approved for the biologic and not actually take it. Morally I don’t think I would be comfortable lying like that to the DR, so I don’t think that is the right choice for me…

Anyway sorry for the long post. I hope everyone is doing well

2

I understand your fears. I also get fearful about the treatments of PsA but have decided the disease really is worse than the drugs. I understand your distaste for lying, I share that also. I also have lifelong asthma. I do understand the insurance company insisting on people trying mtx before the biologics. Mtx is significantly cheaper and for decades, as it was the only med available!, it helped millions of people. Now some studies are coming out that it may not have prevent some of the destruction PsA causes. I take both mtx and Enbrel. I think of mtx as the drug to help me now and the biologic (I have tried them all) is for long term. I guess i think about it this way because when I am not on them I notice the mtx being gone first. It takes a month or so before I noticed the lack of Enbrel. My Rheumatologist has allowed me to come on and off medications and try something new periodically to see if we can get better control. Good luck and don't be ashamed of your fear; these are big meds and a big disease and we do have to be sure we are treating it correctly. I am sending you big hugs and prayers.

3

try the mtx! I was really scared of it too but i took it and got some (SOME) relief and no horrible side effects. Keep in mind that your dr will be monitoring you while you take it to catch anything dangerous. Also, patients are usually started at a relatively low dose to see how you will handle it. a lot of the scary symptoms or complications show up with very high doses. and finally, even if you start taking it, you are not obligated to continue it. This is not an irreversible choice. if you try it and dont like it you can stop.

my personal experience with mtx: I was started on three 2.5mg doses a week and got a tiny bit of relief & no side effects. I wanted something that worked better so my dr increased my does to 6 pills a week. I did not get any more relief but did start having side effects. The side effects I had were frequent urination, loss of appetite, & extreme fatigue. because of this, i have now been switched to leflunomide. but besides the uncomfortable side effects nothing dangerous of major happened while i was on mtx.

4

Hi....you have gotten some real good advice already

It's no way similar the the dose that chemo patients get...not the exact numbers but something like 50,000 mg...to a 20mg once a week?

It's been around forever, mtx

I wouldn't cheat, because there will be a before and after change in you liver labs..they will particularly be watching, every 2-3 months, labs for the liver

What do i know, over 60, and on mtx 17 yrs...i can't give you scientific proof......but i was diagnosed with RA first, and now PSA, so i got both, sero-negative, but i do get elevated sed rates

Now on Remicade, for the pustular psoriasis...but started on Enbrel in 2000, was like a miracle, then Humira, then Rituxan ( was afraid of that one, i must admit---first time tethered to a pole..LOL)...it didn't work on the peelings, but my fired rheummy thought it was ezcema, not psoriasis

I just wanted to mention, ppl with RA ..it's not any easier than PSA....it affects your organs, while PSA can eeffect similar serious things

But some RA patients, do get RA in their lungs, they might pull them offa mtx, but then they will treat you with prednisone..so we can't win

My PCP said to me, your afraid of Mtx, more than prednisone ( when i had a virus, was afraid to take mtx)...he was more concedrned about prednisone

and with both diseases, our eyes can get damage

i jsut read something, yesterday about psoriasis patients, not PSA, having a risk rate for type 2 diabetes....it's all scary

i think i beat my type 2 diabetes..i was scared of that one, more than PSA.....got it in 2/2012, and rheummy thinks it was all from prednisone....when i couldnt take my mtx ( fatty liver)

my A1C test for diabetes, was 7.3 in February, and now it's 6.0...i may have beat it, for NOW...i am offa Metformin med for Diabetes.......

remember, i didn't get the biologics for 5 years after diagnose ( they were not available yet) of course, older, was 48 with my first knee replacement, and i got fused ankles.......can still walk!........but you should think about the meds, vs permanent joint damage

sorry this is soooo long

take care

5

I have just took my fourth round of MTX this past Sunday. I have been waiting to start on Remicade and just got my Remistart approved yesterday. I will be "strongly suggesting" to my rheumy that I want OFF the MTX. Of course, this stuff affects everyone differently. I take my MTX at about 5pm on Sundays. I'm sleeping by 8. Mondays and Tuesdays are just a waste of time. It feels like I'm getting the flu. I have to go in to the office (I'm a one man IT shop for 250 users), but am home in bed by 2pm on both days. I am not a napper and never have been. I don't start feeling normal again until Thursday. So that means I pretty much get Friday and Saturday back, just to start the cycle again on Sunday. I would suggest that you try it first and see how you do on it. You can always get off if it you don't do well on it.

6

My experience was similar to Sherm's when I first started but my body has acclamented(sp?) to it finally. I still have a bit of a hang over feeling on Sundays and Mondays but no more feeling like I am coming down with the flu.

7

I take it Friday night and I'm pretty much worthless the rest of the weekend.

8

Thank you everyone, I think just talking about it with other people who are going through the same thing helps a lot. Its one thing to have my family members, and doctors support, but talking with you guys really does make a difference

Thank you :)