Methotrexate wearing off or change in reaction ? - NRAS

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Methotrexate wearing off or change in reaction ?

JammieDodger3 profile image
23 Replies

Hi, has anyone experienced something similar? Been taking 20mg methotrexate for the last two years. I prefer the Cipla brand, as the tablets are tiny (and I need to have 8 tablets), but recently have been given the Orion brand (due to lack of Cipla, according to my chemist.) I’ve never had a problem before, but I’m starting to feel a bit “off” once I’ve taken my tabs and it’s lasting all day. I can’t put my finger on it, but l feel slightly sick, but certainly not nauseous, just not “normal”. Not sure if my body just doesn’t like the Orion brand or if my body isn’t taking to methotrexate like it used to. Anyone else had a similar reaction?

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JammieDodger3
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23 Replies
Madmusiclover profile image
Madmusiclover

the longer I took it at 20mg the more I felt like that. But not two years! Barely managed 3 months.

JammieDodger3 profile image
JammieDodger3 in reply to Madmusiclover

Thank you for sharing! Did you feel as though you needed sugar? That’s how I’ve been feeling every methotrexate day in the last few weeks / months, but today I’ve felt like that all day.

Madmusiclover profile image
Madmusiclover in reply to JammieDodger3

No. Just felt beeping awful. If I were you I’d get it checked out. Might be something else going on….

Tealblue2 profile image
Tealblue2 in reply to JammieDodger3

Yes everyday for the last 6 months I took it. It felt like I did when I was pregnant. Constantly nauseous and needing sugar. I was only on it for 9 months in total. But it was horrible feeling- also felt depressed, out of it, tired all the time and suffering far more than I did before I had any ra medication I was on the injections though, after moving on from the tablets because they weren’t working enough

Hopeful1 profile image
Hopeful1

Hi JDIf it is effective at its main task, some folk find the syringes cause fewer side effects. The idea of a needle may sound offputting but they are put in units so fine. quick easy and painless to self administer that much preferable to tablets. You are taught how to do it. That route avoids your digestive system.

Good luck.

Kentishman profile image
Kentishman

My understanding is that the fillers used in the tablets can vary from brand to brand. I had a similar experience when I changed methotrexate tablets from very small to larger (same dose) and it was put down to the fillers. Switched back to other brand and no problems.

Gymcactus profile image
Gymcactus

I prefer the small tablets too as less side effects, take mine after my main meal, usually in the evening with plenty of water. If I'm given larger tablets can feel a bit nauseas the day after.

Vonnie69 profile image
Vonnie69

I had great success with my RA for 20 years. After pneumonia, I had total change in my RA. methotrexate no longer worked. Anyone else ever have this experience? If so, what did you do?

Barrcroom profile image
Barrcroom in reply to Vonnie69

I had same issue but not after pneumonia. I suspect it was the Covid vaccine. Tried 25mm methotrexate for a few months no success. Then Adalimubab for 6 months with methotrexate no improvement then tried tocilizumab (roactemra) with methotrexate instant success. Onto my seventh month of roactemra now and methotrexate has been reduced to 15mm and still feeling good. Long may it continue. Best of luck

Vonnie69 profile image
Vonnie69 in reply to Barrcroom

So are you saying you had covid and things changed or covid vaccine and things changed?

Vonnie69 profile image
Vonnie69 in reply to Barrcroom

Before covid vaccine what were you taking?

Barrcroom profile image
Barrcroom in reply to Vonnie69

I was on 15 mg doing well. Then Covid hit. I took all my vaccinations and that’s when my problems started. Went to 20mg and then 25mg. I’ve had Covid 2 or three times but not bad. I have stopped taking the vaccines now. (Just Covid. )

Vonnie69 profile image
Vonnie69 in reply to Barrcroom

Amazing. The vaccines had no affect on me, just pneumonia. I was in pain like when I was first diagnosed. Tendon in my foot still not healed. May go on humira

Vonnie69 profile image
Vonnie69 in reply to Barrcroom

Never had covid but pneumonia changed everything for me

GordonEdin profile image
GordonEdin in reply to Barrcroom

It does seem that an infection can sometimes push your immune system into an overactive state and thus kick off (or maybe rekindle) RA.

Certainly, when I came down with RA about fifteen years ago, it was preceded by coming out in an odd rash. That went away and then I developed the RA symptoms.

That being so, I can see that a Covid vaccination or an actual Covid infection might do the same thing in some people.

Personally, I have had the vaccination and all the booster - plus an actual (mild) Covid infection - without any effect on my RA which remains under control on methotrexate.

Vonnie69 profile image
Vonnie69 in reply to GordonEdin

I was great for 20 years until I got pneumonia. Looking a other drugs now

GordonEdin profile image
GordonEdin in reply to Vonnie69

Hope that you find something else soon! By all accounts, methotrexate works until it doesn't. Keeping my fingers crossed that it keeps working for me without major side effects.

Vonnie69 profile image
Vonnie69 in reply to GordonEdin

We added sulfasalazine to the methetrexate and it calmed things down but my hands never got ack to normal thanks for sharing

GordonEdin profile image
GordonEdin

I've been on methotrexate for some fifteen years - 20 mg for most of that time though recently reduced to 15 mg. No trouble at all for most of that time but I do seem to go through periods when I react more to the tablets.

I've always found that I tend to feel a bit "off" on the afternoon and evening of the day that I take the pills. Sometimes barely noticeable. Other times I will feel a bit tired and flu-like later in the day and think I am coming down with something - then realise that it is the pills,

I always had the tiny pills until the last couple of years. Used to get them in a tub with three months supply. I don't like the bigger pills. Much harder to get down.

Difficult to separate out psychological factors from real physical effects. Sometimes, I will feel quite nauseous taking the last couple of pills whereas other times I hardly notice them. Is this related to the different brands? Don't really know - but the smaller ones are less noticeable on the way down.

I was finding the full eight pills more difficult a year or so back. Swallowing the last one or two was becoming a bit of a struggle. Started to gag. Reducing to seven then six (suggested by consultant because control seems to have been good for a long time) did make things easier.

I've always taken the pills with my breakfast and alternated a pill or two with food and a good quantity of liquid to wash them down. Strong tasting fruit juice can be good for that.

Vonnie69 profile image
Vonnie69 in reply to GordonEdin

I chose injections.

GordonEdin profile image
GordonEdin in reply to Vonnie69

Yes, I'm sure that can be useful if you are having problems swallowing the pills and nausea. I often say that there is no danger of anyone taking methotrexate illicitly to feel good! To date, I prefer to stay with the pills as any problems have been minor.

Buonasaluto profile image
Buonasaluto

chemo immune suppressants aren’t brill I’m on injection methotrexate & side effects are horrible.. try take it on a Friday & hopefully you can slow down over the weekend to get use to the side effects. Remember to take folic acid every day for the side effect but don’t take it on the same day as you take your medication so make sure to leave taking your folic acid out on that day.. methotrexate like all meds cures or help with something but can also bring on its on problems with nausea hair loss brittle nails & skin blemishes & cancer but it is successful

JammieDodger3 profile image
JammieDodger3

thank you everyone!

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