methotrexate

[Missbisous]

Had a letter and a leaflet on methotrexate from rheumatologist today recommending I take this medication along side Pred to stop relapsing in the future with the tapering off.

The side effects I get from the steroids are horrible and I feel so sick every day from lunch time onwards. I’m on 30 mg but tomorrow drop to 20 mg which might help but I see the side effects from methotrexate can make you feel sick too. I also have had a few bouts of shingles when I’m run down and dreading the next bout as it says it can be quite severe.

I have requested an appointment to discuss this with rheumatologist but your thoughts and experience is more helpful. !!

[DorsetLady PMRGCAuk volunteer]

Can’t help on the MTX -sorry. But have you looked into getting the shingles vaccine - you should be eligible for it, as on steroids, and if you are adding in MTX then even more reason to have it.

[Sophiestree in reply to DorsetLady]

I guessing on that dose maybe, but I have had shingles in the past and asked for the vaccine and they said I can't have it until I'm 70 - they think I'm on 8mg....

[DorsetLady PMRGCAuk volunteer in reply to Sophiestree]

If Missbisous looks at this -page 7 -scrolls down to end of page -and states she been/is on higher doses - might get it -always worth asking

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[Sophiestree in reply to DorsetLady]

Agree, on those doses it shouldn't be questioned. But they baulked at my pneumonia vaccine as I was under the recommended dose, but I fought my corner and also my consultant wrote that they suggested it so they couldn't really argue. I am going to ask my consultant at my next appt if he would put it in my letter.

[DorsetLady PMRGCAuk volunteer in reply to Sophiestree]

Shouldn’t have to be that difficult- but it is in some places it is.

[Missbisous in reply to DorsetLady]

Can get a vaccine now at 65 for shingles but I’m so wary of these vaccines !

[DorsetLady PMRGCAuk volunteer in reply to Missbisous]

Surely better than getting shingles… and the Shingrix one is non-live unlike the older one.

[Sophiestree in reply to Missbisous]

I'm 66 so didn't fit their criteria. I have had shingles and definitely don't want it again.

[SnazzyD]

Are you on any stomach protecting meds?

[Missbisous in reply to SnazzyD]

Yes20 mg Omeprazole daily.

[SnazzyD in reply to Missbisous]

Has it always been ok? It doesn’t suit everyone.

[piglette]

Side effects can be pretty horrible at the dose you are at for the moment. The good news is that it does improve as you reduce.

[krillemy]

I take 20 mg of MTX weekly. I started slowly, beginning with 5 mg, then increasing to 10 mg, and finally 15 mg. I take it before bed with some yogurt. In the beginning, I experienced a bit of tiredness the next day, as well as a loss of appetite (which was actually a good thing). However, these side effects went away, and now I don't experience any at all. I also take 12.5 mg of prednisone.

MTX generally makes me feel better and reduces the swelling in my hands and feet in the days following the dose. I also find that it alleviates some of the brain fog I sometimes experience. It took about 4 weeks before I noticed a difference.

So, go ahead and give it a try! If the side effects don’t subside, you can always choose to stop. Also, 30 mg of prednisone is quite high—it's much better to be below 20 mg if possible. Good luck!

[Missbisous in reply to krillemy]

Thank you. I’m still waiting to see the rheumatologist and have so many questions for him before I decide what to do. But if I can do without mxt I will.

[Doublef]

methotrexate was so toxic to me both tablet and injection made made me very ill feeling feeling sick no appetite and bedridden. I'm now on 10mg of lolumonide and 15mg of pred. and do not feel I can go any lower at present. Also difficult to say if the lolum. has anyone any affect as it very slow acting.

[PMRpro Ambassador in reply to Doublef]

Is that leflunomide you mean?

[Doublef in reply to PMRpro]

yes I never get it fight righ

[PMRpro Ambassador in reply to Doublef]

It's a pig to spell!!!!

[tangocharlie]

I couldn't tolerate MTX even in injection form, gave me terrible diarrhea and wiped me out for days. It could well be something else causing your stomach problems eg the omeprazole as Snazzy suggested. Might be worth trying another stomach protector eg Cimetidine