Methotrexate not enough..: Hi everyone, I started... - NRAS

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Methotrexate not enough..

Sunshinereturns profile image
21 Replies

Hi everyone, I started medication a year ago. 15mg methotrexate tablet form, upped to 20mg in tablets then a switch to injectable. One year into medication I’m still not in a controlled state and after another night of acute pain I’m going to make an appointment with my consultant to move onto the next layer, as he advised me might be necessary.

Could anyone advise what this is likely to be? Also, I tolerate methotrexate very well. How hard are biologics/ other therapies to tolerate?

I’m 46, have a moderately active lifestyle and am trying hard to stay positive!!

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21 Replies
Madmusiclover profile image
Madmusiclover

This might be helpful. Personally I couldn’t tolerate methotrexate but love my JAK! We are all different.

nras.org.uk/information-sup...

AgedCrone profile image
AgedCrone

Listen to your rheumy…..he/she will offer you what they think will be the best choice for you…..they know your clinical condition…& how well or not you have tolerated whatever meds you have taken both for RA & any other conditions in the past.

We can only say what we take & how it has affected us…but your own doctor is the one to listen to.

Good luck…there are many excellent drugs for RA these days.

t

Dobcross1 profile image
Dobcross1

if you tolerate MTX well, you might want to try going up in dose - I was not fully controlled until I went up to 25mg Metoject. I then tried to reduce to 22.5mg and had to return to 25mg as symptoms started to return. Incidentally since reducing then going back up I've never got back to how good I was before trying to reduce. Increasing your dose is worth a thought if you aren't ready to move to another med yet. Good luck 👍

Sunshinereturns profile image
Sunshinereturns in reply toDobcross1

Oh this is really encouraging, thank you. I hadn’t realised I could up my dose further.

in reply toSunshinereturns

It can go up to 25mg.

Boxerlady profile image
Boxerlady

I started on Methotrexate and Hydroxychloroquin and added Sulphasalzine (triple therapy) so there are lots of options as well as biologics/JAKS. As AC said, your rheumy will be able to advise what is best for you at this stage.

Sunshinereturns profile image
Sunshinereturns

Many thanks for each reply, all very helpful.

JEM95 profile image
JEM95

I kept increasing MXT up to 22.5 mg. Every time I tried to reduce it I had issues.

In the end I started Benepali with a plan to reduce my MXT dosage over time.

I’m now on 10mg MXT as well as the Benepali and pretty stable. I have some hand and feet issues but these aren’t RA, it’s been suggested they are Fibromyalgia instead.

There are so many combinations of drugs and we all respond in different ways. Keep your Rheumy up to date as they can look at different combinations of drugs for you.

Mmrr profile image
Mmrr

Biologics , particularly JAKs have been so much easier on my body than any conventional DMARDs (I've had them all HDQ, SSZ and MTX, TNFs and JAKs).

Often your rheumatologist will ask which medication you wish to try next, except in limited circumstances they have no more idea what will work best for you, many will voice this at your appointment.

Last week I was offered the choice between two TNFs, a new JAK or IV Rituximab.....completely my choice.

I chose to stay with JAKs.

My advice would be to read up a little on the common choices, have some questions ready and don't be afraid of advanced therapies. They are often so much easier than MTX. Good luck.

Viv54 profile image
Viv54

Hi my GPput me on them to try , i was sick and terrible upset stomach from the first tablet, horrible experience !

AR50cyclist profile image
AR50cyclist

good morning. If you are only on MTX it’s likely your rheumatologist may want to add in another drug like hydroxychloroquine as well as possibly increasing the dose of the methotrexate. I wasn’t stable until I was on 25 mg weekly. The rheumatologist has added in hydroxychloroquine too as he said they like to use more than one drug, if you then stop responding you are more likely to be moved to a biological.

I still have flares, mainly after colds, but on the whole been able to keep up a very active lifestyle on MTX.

Sunshinereturns profile image
Sunshinereturns in reply toAR50cyclist

This is so helpful, appreciated.

Sky42 profile image
Sky42

I started on 15mg methotrexate(tablets) , it improved things but I still wasn't right. Quick action from rheumy nurse out me on 20mg methotrexate (injection) and sulfasalazine added, 4 tablets daily. This has me pretty much back to normal. Some aches and pain if I've done too much or if tired. I'm grateful to have got to this stage. Hope your journey to the combination that works for you doesn't take long. I think another dmard would be tried next and/or increasing methotrexate.

Sunshinereturns profile image
Sunshinereturns in reply toSky42

Thank you so much. This makes me so hopeful!

nomoreheels profile image
nomoreheels

As others have said double or even triple therapy isn't unusual before the jump to biologics when you've only ever been prescribed the one DMARD. I've been on MTX 13 years & tried double therapy with 3 different DMARDs. I currently remain on MTX injections & prednisolone, though recently started tapering the pred. I would think as you're relatively recently diagnosed adding a DMARD or increasing your MTX may be the preferred way just now, but of course it's your Rheumy's recommendation you should follow. So pleased MTX suits you though.

Morning. I had sulfasalazine added to my Mtx and that helped considerably. It was incremental to start with and I now take 4 a day. 2 with breakfast and 2 with my tea (dinner if you’re a southerner😂).

Sunshinereturns profile image
Sunshinereturns

I feel much better informed now, thank you so much.

bienassis profile image
bienassis

That you are tolerating Methotrexate is a positive to hold on to. It may well be that the addition of another DMARD to bolster the Methotrexate is all you need. I'm not sure at what stage a biologic would be considered as I'm a long term sufferer and those meds weren't around when I was diagnosed. Listen to your Rheumy - from your post he/she has things well in hand, and won't want you to suffer unnecessarily. He/She is taking the "steady as she goes" approach - the usual, first thing after diagnosis,

Hang in there! And keep positive if possible - there are so many pathways with this disease; surely, there will be one for you.

I wish you the best of luck - I've found this forum a hive of information and support over the past 2 years that I've been a member.

bienassis

Sunshinereturns profile image
Sunshinereturns in reply tobienassis

Thanks so much, that’s so helpful and I agree with all you say.

Chockyuk profile image
Chockyuk

Morning 👋

Mthx wasn’t enough for me, so my Consultant added in Hydroxy, but that gave me terrible stomach problems, so had to stop. She’s now added in sulphasalazine - so now I’m on 20mg of Mthx and 4x500mg of Sulphasalazine. I don’t want to jinx it, but so far it’s working ok - fingers crossed 🤞

There are lots of options, I could hardly walk after my last flare, and I was sceptical just adding in Sulphasalazine would work. It’s taken about 3 months, but I do now feel lots better.

Sunshinereturns profile image
Sunshinereturns in reply toChockyuk

Thank you! I now can’t wait till Wednesday to find out what he’ll recommend. A few people have said sulphasalazine has been effective so I’m kind of hoping he says that.

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