Methotrexate - Has anyone taken it before?

[sookiestjames]

Has anyone been prescribed methotrexate from their doctor before? Can you tell me your experience? Any side effects? Did it improve your symptoms?  This would be treatment for Rheumatoid Arthritis.  Thanks!

[quesyrah]

I took it for years for RA. No side effects, but I imagine it might depend on your dose.

I don’t recall the strength of the pills but I took 8 weekly. They’re very tiny.

Had to edit for a typo- initially I said daily when I meant weekly

[sookiestjames]

Oct 27, 2021 12:52:35 GMT -5 quesyrah said:

I took it for years for RA. No side effects, but I imagine it might depend on your dose.

I don’t recall the strength of the pills but I took 8 weekly. They’re very tiny.

Had to edit for a typo- initially I said daily when I meant weekly

Did you notice a change while on it?  Did you take it along with a biologic?

[devonpow]

Yes I’ve been ion methotrexate for about 4 years now. I’m on 25 mgs a week which is the most my dr will do before moving onto injectables or a different medication (I have an autoimmune disorder that for me causes inflammation in my eyes - recurrent uveitis. It can also cause RA and some other inflammatory diseases. Always a good time!)

I’m VERY lucky and don’t have a Lot of side effects. Nausea was never an issue luckily. I’m very tired a lot. I get really bad canker sores. That’s about it. I take folic acid every day except the day I take my methotrexate (and I double the folic acid the day after I take my meds) and that helps. I get bloodwork to check my liver every 3 months when I see my dr. I drink alcohol as normal and have had no problems, but I know others do.

Good luck and I hope the meds help!!

[sookiestjames]

Oct 27, 2021 13:08:43 GMT -5 devonpow said:

Yes I’ve been ion methotrexate for about 4 years now. I’m on 25 mgs a week which is the most my dr will do before moving onto injectables or a different medication (I have an autoimmune disorder that for me causes inflammation in my eyes - recurrent uveitis. It can also cause RA and some other inflammatory diseases. Always a good time!)

I’m VERY lucky and don’t have a Lot of side effects. Nausea was never an issue luckily. I’m very tired a lot. I get really bad canker sores. That’s about it. I take folic acid every day except the day I take my methotrexate (and I double the folic acid the day after I take my meds) and that helps. I get bloodwork to check my liver every 3 months when I see my dr. I drink alcohol as normal and have had no problems, but I know others do.

Good luck and I hope the meds help!!

That is super helpful, thank you!

[devonpow]

Oh and for symptoms - yes it has helped. I’ve continued to have flares and they did gradual increases until we got to the level I’m at today. I haven’t had a flare in a year and a half now and that are going to start slowly tapering and see what happens (I’m nervous!). Not sure how my issue compares to RA but they work to have things be quiet for at least a year then for a lot of people their body is kid of “re set” . Now the inflammation may come back presenting in a differing way, we don’t know.

[latte]

I took it previously in combination with Plaquenil for RA. I did have any side effects for a few years and then all of a sudden, I developed tinnitus for 24 hours after each dose. I couldn’t handle it and stopped taking it. I was still having flare while on it anyway and saw no difference when I stopped. Eventually I moved onto Biologics. Good luck!

[dancingnancy]

I take it along with hydroxychloroquine and prednisone so it’s hard to say what exactly is helping- hopefully it all is. I did experience hair loss so I take 2 mg folic acid per day plus biotin and that helps a lot.

[lessel]

My mom was on it (lupus + RA and some other issues), plus plaquenil and prednisone for about 18 years. She took her dose (varied from 6-8 pills over the years on Sunday afternoons) because it really upset her stomach until about the next morning. She did really well on that regimen for a long while. She had to stop taking the Plaquenil due to some eye/retina concerns, and was also having some kidney issues due to the prednisone. So she only recently stopped taking the metotrexate too. She’s trying something else for awhile (name is escaping my memory right now), and if it doesn’t work as well she’ll move on to biologics. But she has some risk factors that make those less desirable.

[quesyrah]

Oct 27, 2021 13:01:19 GMT -5 sookiestjames said:

Oct 27, 2021 12:52:35 GMT -5 quesyrah said:

I took it for years for RA. No side effects, but I imagine it might depend on your dose.

I don’t recall the strength of the pills but I took 8 weekly. They’re very tiny.

Had to edit for a typo- initially I said daily when I meant weekly

Did you notice a change while on it?  Did you take it along with a biologic?

Yes, I did.

I was in pretty bad shape when I started with my rheumatologist. I started with metho, prednisone and home injections of enbrel.

Later I switched from Enbrel injections to IV infusions of orencia. Orencia made a huge difference for me.

[whitemerlot]

My husband has been taking it for 6 or more years for mixed connective tissue dIsease, which for him presented as painful, swollen joints and fatigue. He was taking it with prednisone to start because it took a while to get diagnosed and he was having some flares. I think he started at eight of the 2.5 mg pills and he is currently taking only three of the 2 1/2 mg pills a week. He has not had any symptoms for about five years. He is planning to do a trial of being completely off medication in the summer. He has never had any side effects.

[wesleycrusher]

My husband is on it. He has psoriatic arthritis and recurrent uveitis. He had no side effects but it didn't seem to help either originally so he was taken off it. A few years later his new doctor put him back on it and said that it can help extend the length of time his biologic meds worked. He's cycled through quite a few different ones that would always eventually stop working, so it supposedly will make them last longer before his body stops responding. He's been on the same biologic for a few years now and is stable so fingers crossed it seems to have helped that.

[4speedy]

My DH was on it about 17 years ago for RA. He was diagnosed about 3 weeks after we came back from our honeymoon and was put on Methotrexate, Plaquinil, a steroid and folic acid. It never did really get his RA fully under control and he had lots of nausea. He would take 2 pills Thursday night, 2 Friday morning and 2 Friday night. The nausea set in Friday evening so he spent Friday into Saturday throwing up, Sunday sleeping and Monday back to work. We were in our 30s and newly married and wanted to have kids so he only stayed on it for 6 months. After that, he switched to Humira and then Enbril. I think it must be about 12 years now that he’s been on enbril and it’s worked very well for him.

I know you have probably read all the info but if you are still in child bearing years and could become PG, either talk to your Dr. and switch to a biologic or be very careful about birth control. In our case, insurance would not cover biologics until the rheumatologist wrote a letter indicating DH’s intent to have children. Then it got approved immediately.

Also, this is an unsolicited tip but it was helpful to me 17 years ago. At the time, I was on RA chat boards trying to get all the info I could. DH was not doing well and the Mx was beating him up. It was a truly miserable way to start a marriage. I remember posting something along the lines of “this is awful, does it ever get any better?” Because all the posts seems like such hard luck stories. I reminder one kind lady told me it would indeed get better. She said that RA chatboards would lead you to believe that everyone with RA is in misery. In reality, the people who hang out on RA boards are mainly there because they are in crisis. But the majority of RA patients are living their best lives and are not posting because they are out living their lives and not thinking about it. The poster told me to take the information and facts about meds, testing, treatments, etc. because the posters on the board were a wealth of information but leave their stories behind because it was not representative of the whole RA community.

Good luck to you, hope you quickly find the treatment plan that works for you.

(Disclaimer—I’m not referring to this board, people are not coming here specifically to talk about their ailments. This is an example of people with autoimmune disorders who are out living their lives. It’s the RA specific boards where it seems as though everyone is in the midst of a crisis)

[Dznyprnces]

I’ve been taking it for years, in combination with different meds. My current regime is monthly orencia infusions and weekly methotrexate (I take 10 pills once a week but can’t remember the dosage). My RA is very well controlled right now, and has been for several years. I don’t really have any side effects. My hair has been falling out like crazy since I turned 40, but I’m not sure I can contribute that to the methotrexate, since I’d been taking it for over 10 years before my hair started falling out.