I've been on mycophenolate for a while and been on azathioprine b4 but still not under control on mycophenolate and steroids.
So now rheum has decided to try me on 15mgs of methotrexate and I'm starting it tomorrow and for some reason am bit scared not sure why as I've switched drugs b4 and have started lots of drugs b4. I think is because of the sickness side effects and that many people have said that they always feel really awful the next day.
I luckily have thurs off this wk so if I am sick then I'm not working anyway so it's ok but I'm just worried anticipating it i suppose!
I'm trying the tablet form first and if I dont tolerate it then will go onto injections that have less nausea side effects
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Sara_A
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Hi Sara, I've just started back on MTX and am finding I get the side effects of headache and nausea on dose day and day after later in the afternoon!. I've been advised to drink lots of water on dose day which can help to lessen the effects!. Also to take them with a bigger meal can lessen the nausea.
Presumably your Rheumy nurse
has run thru all the dos and dont's about it like take the folic acid tablets on the six days you don't take the MTX?.
I do hope it helps you as it sounds like you've been struggling with different drugs for a long time!. It's very good for the arthritis but can take up to 6-12 weeks to work!. Tough for us waiting!.
Keep us posted how you get on and all the very best. Xx
That was one of the first i tried. I started with injection. I felt no side effects and no benefits. Why not try Benlysta? Should be less toxic than methotrexate. I am trying it now, doesn't seam to do much for me, but I know that some people found it helpful.
Also why not try injection immidiately considering that pills might make you nauseous? Also, have some benedryl for nausea before methotrexate, that should help you with side effects. I take metoklopramid for nausea when I can't handle it and works great!
I was feeling like you when starting Benlysta, and it's a piece of cake as soon as i tried once...
We discussed that drug but decided to try mtx 1st and decided to try tabs 1st b4 inj after talking to rheum nurse as she said most people actually tolerate and dont have nausea so we will see how it goes!
I have been on methotrexate for some years now, after a spell on hydroxy which did nothing for me. Started on 12.5 mg , been on 15g for a long time and I swear by it. I've been lucky & had no side effects & the metho has definitely controlled my Lupus. Good luck - hope it works for you as well as it does for me.
Thanku I really hope so! I'm 40yrs old and my partner again has just had to lift me out of bed as am so stiff cannot move. Had to wait for him in pain as he was out walking dog!
Are you on any Prednisone? That looks severe to me... When i was like that i started a round of Prednisone and got better while waiting for immunosuppressant to kick in. It takes a few months for immunosuppressant and hydroxycloroqinine to kick in...
I've been on pred non stop for about 12 yrs now and at the moment taking about 10-15mgs maintenance a day. Usually I take 5mgs maintenance a day and when a bad flare go 20-30mgs daily. I just hate the stuff I don't think I'll ever get off of it.
I have to increase to 20-30mgs about 5-6 times a year and by the time I've tapered back down to 5 Ive usually started to flare again and had to go back up again!!
I overheard my consultant talking to a patient about tapering down and coming off their steroids and I said when I went in oh what about me, when will I be able to come down and off my steroids I've been on them 12yrs! He said um if I'm honest I dont really ever see u coming off them completely tbh!
Well that was that then!! Ha
I get major addiction to certain cereals esp when I increase its awful! I eat them by the box full and it's like an uncontrollable craving x
well there is always hope you will get off them. I have MCTD and prognosis is that usually there is no recovery, but not worsening either, while for lupus the prognosis is more unpredictable, you can get worse but also get better for no reason. keep investigating what helps you. For example I found out that sugar and sucrose is making me feel worse and since I stopped eating deserts and sugar (I do eat fruits, just no processed sugar) I feel better. I experimented with random supplements and found out metformin and ldn might be helping too....also when you get to menopause you might get better too
I started methotrexate 5wks ago..I posted here beforehand to check out pros n cons from this wonderful group who were very helpful..it's good to know what you're facing right?
I'm very happy to say that I'm having no problems with it..it's once a week which is easier to manage..before I was having to swallow great big 'silver bullets' twice a day n they DID make me sick!! But I'm tolerating MTX well n I've already noticed improvement with my symptoms!!
Oh great that's reassuring to hear!! Esp that u are noticing improvement already, I was a bit worried having stopped the mycophenolate 4 tablets a day then effectively to nothing until this builds up enough so I'm hoping it's not gonna take 2-3 months!! I also had to stop the hydroxychloroquine a few months back after 10 yrs use due to probable eye damage so I'm desperate for this to be the one!
Hes put me on 15mgs it's for joint pain and stiffness that's my main problems and fatigue and major exhaustion
Hi I take Methotrexate and have been doing for last 3 years, I have never had a problem with it and tolerate it well, if you feel sick with it you can have an injection pen that you minister yourself - hope all goes well xx
You sound just like me when I had to start MTX I had some nausea but worse than that - don’t laugh now - I had horrendous, smelly and loud flatulence!! They don’t mention that under the long list of side effects but I posted on here and on the RA site (I have both Lupus and RA) and lots of people replied and said they had similar experiences. Thing is, if the side effects are bad and you can’t get past the nausea or get windy, you can always switch to injections. That’s what I did and other than feeling a bit off the day after I inject I’m fine. I have to say that Methotrexate gave me my life back.
I have been on MTX for at least 12 years. With the pills I couldn't handle the nausea as it seemed to go on for about 4 days or more so switched to injections and it's much better. I feel a bit off the day after I inject but after that it's fine.
For me it has been a wonder drug but I have always taken it with another one too.
I dont know if its stronger but it just didn't work enough for me I was on 5 tablets a day but my white cell count kept dropping so I had to drop to 4 a day.
They are just different drugs and i suppose people respond differently to each one.
I just know that u sometimes have to go through a few to get the one that suits u and I'm really hoping this is the one!
I’m very interested in this as methotrexate has been suggested to me. I’m a bit worried about coming off mycophenolate but my rheumatologist said my steroid dose would be put up initially.
I asked to go away and think about it so I’ve just been reading a bit about it.
Are you on anything like lansaprazole or omeprazole? Everything I’ve read said they interact, with Ranitidine off the market that is filling me with dread
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