Worried about change: My RA consultant wants to reduce... - NRAS

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Worried about change

Scarlet56 profile image
15 Replies

My RA consultant wants to reduce my meds - methotrexate and sulfasalasine as my blood results and symptoms have been good. I fortunately don't have any adverse side effects from medication and I'm nervous about reducing dose in case symptoms reappear. I'm thinking leave well alone - any thoughts?

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Scarlet56 profile image
Scarlet56
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15 Replies
AgedCrone profile image
AgedCrone

I reckon the lowest dose you can manage on must be a winner.

Your rheumy will increase the dose if you can’t manage.

Surely nobody wants to take drugs they don’t need?

nomoreheels profile image
nomoreheels

One one hand I can understand your hesitance, why mend what ain’t broke but I’d prefer not to take a higher dose than may actually be needed so I’d run with your Rheumy's suggestion & see. You can always ask to go back to your normal dose if you notice it's not quite holding things in check. I'd far sooner be taking just the right amount over taking too much of any med... & it's what is intended, take the lowest therapeutic dose.

I totally understand your reservations. Lowering your dose will be controlled just as if your just starting. There will be tweaks no doubt. Your very lucky listen to your Rheumatologist 🤞it works

KittyJ profile image
KittyJ

Surely it’s worth a try if your rheumy thinks you should? If you get a return of symptoms( that’s if you do, you may not) you can always up the dose straight away. You will only find out by trying. The least drugs were have to take the better I think. I’d love to be able to reduce some of the cocktail I take. Let us know how you go and 🤞🏻 😊

Smelliott profile image
Smelliott

Just to echo what everyone else has said, I'd always want to be on the lowest effective dose possible, especially given Covid etc. at the moment. They'll probably reduce very slowly anyway, like 2.5mg every 6 months or thereabouts. They won't slash the dose.

dawkin_S profile image
dawkin_S

Definitely agree with everyone here - the fewer tablets, the better for your overall health. Thing is, you know that the dose you are now on definitely works, so once it's reduced if you did need to go back up to that dose you can rely on it working again. Got to be worth taking a punt on a lower dose - fingers crossed for you. xx

AgedCrone profile image
AgedCrone in reply to dawkin_S

Absolutely...I have managed to get down to taking just one drug.

That way...if something goes awry...unless it’s a new condition....there can only be one culprit.

Well that is what I am hoping?

helixhelix profile image
helixhelix

I agree with others that trying to lower is a very good idea, just do it very slowly.

I am now reducing MTX and am doing it one dose at a time, and waiting 3-6 months before dropping another dose. My rheumy & I are aiming to get to 10mg, so not far to go now as about to drop down to 12.5mg.

AgedCrone profile image
AgedCrone in reply to helixhelix

It’s common sense when you think about it .

If you just stop taking food & water......you eventually drop dead.

If you gradually stop taking food & water , you lose weight which was probably the intention in the first place!

Summerrain14 profile image
Summerrain14

I too would be anxious about it, but hopefully any reductions will be done incredibly slowly. I learn so much daily as had no idea that meds can be reduced if doing well but makes sense to be on the lowest dose of meds as possible. x

Linny55 profile image
Linny55

Hi Scarlet

I've been on methotrexate for 20 years at various dosages depending on blood tests. Sometimes it's good to try lower dose, you can always up again if have flare up.

Hope you remain pain free as long as possible.

Linda

Creakywrists profile image
Creakywrists

I started to reduce sulfasalazine last year and after the third reduction went into a flare so at my last appointment it was put back up by one dose but not back up to the original dose so that’s a result of sorts. I was supposed to see the consultant in April for a review but my appointment was postponed until June and will no doubt be done on line so we’ll see what happens next.

Just to make it more complicated I think my biologic is not nearly as effective as it was initially - I’ve been on it for 2 years Two steps forward and one back!

However I still think it’s worth trying to reduce if you can.

I was taking 20 mg MTX and unfortunately my liver was being affected. I was feeling great and had no inkling of any liver problem. I had to stop MTX for 3 weeks until liver results improved. Then I was restarted on 10 mg, partly so as not to challenge my liver too much and partly because of covid-19. It's over 3 months since I stopped the MTX and I've been on the lower dose for almost 3 months. I'm feeling fine and I agree with what other people have said about the best treatment being the least dose that works for you - which will be different from what works for other people. Give it a go!

Scarlet56 profile image
Scarlet56 in reply to

Reassuring to know so many have been through this without too many problems. I hate taking so many tablets so providing all’s well it will be a relief. I’ll let you know how I get on

in reply to Scarlet56

It's natural to worry about the drugs - when we first go on them, when the dose is changed and when we stop them for whatever reason. I've been very lucky that, with MTX, none of those things has caused me any trouble and it may well be the same for you. I hope so. I look forward to hearing how you get on.

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