Reducing drugs?: My question is when do you know if you... - NRAS

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Reducing drugs?

365806
365806
54 Replies

My question is when do you know if you are actually in remission as opposed to the drugs are just working? I have responded well to drugs over the last few years, I am currently on methotrexate and cimzia, having stopped sulphalizane. I am nervous to stop taking the drugs in case the pain comes back, but equally if I am in remission I don't want to be taking drugs uneccesarily. Does anyone have any experience of reducing drugs?

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helixhelix

Most commonly remission is maintained chemically, ie keeping on taking the drugs. Only a small percentage of people manage to taper off drugs completely and stay in a sustained remission. I had hoped I would be one of them, but no. I tried dropping doses of drugs and the disease became active fairly quickly (and nibbled a bit of one toe).

If that’s what you want to do talk to your rheumy about it, as they will have a view about whether your disease is likely to be sufficiently stable to give it a try. Mine didn’t think it was a good idea, but understood I needed to try. And when I phoned to say it wasn’t working fitting me in to give me a steroid injection quite quickly (and without saying “I told you so”!). Always best to keep your rheumy on side.

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sylvi
sylvi
in reply to helixhelix

I agree with you Helix if the drugs are working why try and stop them when further down the line you need them again and then you go back on the drugs only to find the ones that worked before won't work this time because the RA has altered in your body and you will need to try something else. I am not the most brightest star in the sky, but I don't see the sense in stopping something if it is working.xxxx

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365806
365806
in reply to sylvi

I agree....but I have heard of people completely being RA free having come off the drugs...I suppose it's about being confident to try it out...which I am not at present.

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AgedCrone
AgedCrone
in reply to 365806

Be very careful...if you stop the drugs that are keeping you painfree.....if you then try to go back on them....they might not work.

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365806
365806
in reply to AgedCrone

Hi thanks...this is the sort of information i was after

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365806
365806
in reply to helixhelix

Thankyou that is good advice.

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AgedCrone

I think if you value your quality of life & by taking RA drugs you can lead a good life it is a small price to pay.

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Ruth12345

I spoke to my rheumy about this a while ago and he said if I wanted to try I could, but the pain etc would return. I didn't try I could not stand the thought of going down hill again. Up to you, but do talk to rheumy if you are going to do it. All the best.

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pool0009

Hi, I am currently in remission and my rheumy reduced my methotrexate dose last year and now am off it completely, just taking 20mg leflumonide now. So far so good, but am nervous the pain will start up so any little niggle I worry about but fingers crossed will stay the way I am. Seeing my rheumy at the end of the month.

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365806
365806
in reply to pool0009

Can u ask how did you know you were remission? Is there some sort of assessment...or is it just so long pain free? I am seeing my consultant this week.

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pool0009

Well I have been pain free, no assessment, my theory suggessed we try.

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Dobcross1

Thanks for asking this question - it's one I've often wondered about. On reading the very useful replies I think my big fear would be that if I had to restart drugs they wouldn't work 2nd time around. Though I would be open to slightly reducing my dose to see if I could live with that. I wonder if there is a 'set' period of time that you need to be symptom free before trying to reduce - how does the Rheumatologist judge when you might be ready.... mind you I'm nowhere near any of this yet but I live in hope !😂 Good luck whatever you decide x

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365806
365806
in reply to Dobcross1

If I find out more I will let you know

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Dobcross1
Dobcross1
in reply to 365806

Thank you.

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helixhelix

I had been completely stable for two years, with no raised markers, no swollen joints, nothing, nada, zilch. I reduced doses of my drugs with rheumy agreement (I was on top doses of MTX, Sulpha and hydroxy). I kept the MTX unchanged and first slowly cut sulpha from 3g down to 1.5g, which was ok. Then cut hydroxy from 400mg to 200mg which was when shit hit fan. Needless to say I increased the dose pdq.

So I never actually stopped any drugs entirely.

I am now on a biologic and MTX, and have been stable for a year so am dropping doses of MTX.....fingers crossed.

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Dobcross1

Good luck HH.

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365806
365806
in reply to helixhelix

Hi yes I'm on biologic and Mtx, ive come one other drug and have reduced Mxt , just not sure how far to go. I have also gone wholefood plant based as that is supposed to help as well.

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helixhelix
helixhelix
in reply to 365806

Well I feel that my super good diet has been responsible for my lack of side effects....

My rheumy is aiming for 10mg MTX as the lowest therapeutic dose. I’m down to 17.5 so still a way to go.

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Cien
Cien
in reply to helixhelix

The reduction of drug in my case was accidental. I had to stop Hydrocychroquine due toxicity in the my eyes and the MTX from 20 mg to 17.5 mg was due to my gut problems. I am asymptotic with normal blood test at the moment.

I have a healthy diet with some probiotic ( yogurt, kefir or Natto with food) for my gut health and doing gentle exercise daily like TaiChi and a bit of Pilates. When I see my Rheumy next year I will try to discuss the possibility of reducing the MTX to 15 mg. finger cross!

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Eiram50
Eiram50
in reply to helixhelix

Wishing you every success HH

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wishbone

I've tried on two occasions many moons ago. Both were unsuccessful and the pain returned with a vengeance! :-( I was on methotrexate both times, which did work again when I restarted it.

More recently, I've been on and off baricitinib this past couple of months, currently off, and it has worked just fine when I've gone back on it. That said, there's always a risk that it won't when I start taking it again, hopefully on friday.

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Dobcross1
Dobcross1
in reply to wishbone

Good luck, hope it works!

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wishbone
wishbone
in reply to Dobcross1

Thanks Dobcross,

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Mmrr
Mmrr
in reply to wishbone

Fingers crossed for you wishbone. Have your ulcers healed ?

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wishbone
wishbone
in reply to Mmrr

Thanks Mm,

Two have, but there's still a little way to go with the stubborn venous ulcer before I'm willing to restart baricitinib. I'm not sure if it is impeding the healing process, but back a couple of weeks ago the ulcer was healing nicely then went into reverse about a week after I started taking baricitinib again. It could just be coincidence I suppose but I'm not willing to risk going back on it quite yet. Rheumy told me to stop taking baricitinib only if the ulcer is infected, but how do they know what's happening with me as I haven't seen a rheumatologist for 16 months, plus baricitinib is a relatively new drug so I'll do what I think is best.

Sorry for the wee rant!...guess it's tramadol time again! :-) lol

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Agoodlife

My fear is actually that once I started the meds I really cannot stop them because of the effect they have left behind on your organism and your Illness. So if you can start from the least toxic following the effects on Your body and adjusting your treatment options after this would be a safer option.

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helixhelix

I'm not convinced by that Simba, every cell in your body renews after varying periods of time so only things that disturbed cell replication would leave behind an effect surely?

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Agoodlife

Hello again HH😊 You seem to have checked up on me. I don’t think anyone really knows the answer. I can only compare the experiences of meds and RA with other forum members and research that is nearly nonexistent and my own journey without RA meds. Read recently an article about the need of developing a RA med that does not have a negative effect on our immune system. from Penn. State. Lots to learn still🤓All the best. Simba

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helixhelix

I think there needs to be more that look at short term effects on the immune system, which are certainly present for most people since that’s what the drugs are supposed to do...and the long term once you have come off the drugs.

The area that seems to be most researched is of course fertility and MTX, as to whether it has a long term effect on fertility or not. And whether that can be unpicked from any effects RA itself has on fertility, since the must be something hormonal going on. But no answers as yet, all very tentative.

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Nyreedw

The reason you are in remission is because of the meds. As soon as you stop taking them the drugs will slowly come out of your system and the RA will flare. Some people also find the meds won't won't work as well when you start them again. I've been on them 20 years and its why I'm doing so well. Something you need to discuss with your rheumy.

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pool0009

I have been pain free for 6 years now, back to my old self luckily, but I can't take it for granted and it could come back, I don't know.

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alexis64
alexis64
in reply to pool0009

Hi,

I am glad you are in remission.Please can you advise on what steps you took that aided the remission process

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pool0009
pool0009
in reply to alexis64

Just took the meds and nothing else. I was prescribed methotrexate 25mg injections and 20mg leflumonide tablets when I was first diagnosed back in 2011,

it took a few months to get it under control and then gradually I started to feel like my old self again, stiffness and pain started to subside. Methotrexate was reduced to 20mgm, then I asked to reduce it to 15mg as it was still making me feel a bit sick on day of injecting it, was still ok and then earlier this year my rheumy suggested we try without. Luckily I am still ok, fingers crossed.

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Staycalmandcarryon

Three years in remission. Symptom and pain free except mild peripheral neuropathy in the form of tingling toes, possibly unrelated. Have reduced the HCQ which is the only drug I’m taking, to a minimal dose (one 200mg tablet once a week). Never complacent, let’s see what rheumy says in March at my annual appt.

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juliea793

I was on 25mgs Enbrel twice weekly and have been on this drug for 15 years. No mtx. I can only reduce the dose to 25mgs to once weekly as maintenance dose. I am in remission. But I had to come off the drug for 3 months because of serious illness and boy did RA hit with vengeance. It took at least 3 months to get pain free again and am now reducing the medication to 25mgs every 5 days.. Be careful if you stop taking any medication as restarting might not work. Good luck

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365806
365806
in reply to juliea793

Thankyou it's really good to hear of other people's experiences...I will proceed with great caution...seeing my consultant this week so will discuss with him more. Good luck!

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CagneysMum

I have been pain free and recently came off mtx for 5 weeks (with my consultants support) to be able to have yellow fever vaccination so I can go travelling with my husband. First two weeks were fine, no change .... so I started thinking maybe I didn’t need mtx at all anymore. Weeks 4 and 5 I was in terrific pain and unable to walk on my left foot/ankle. Had some steroid shots to get me back on track and now ok, but showed me how much I rely on mtx at the moment.

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365806

I think the trouble I have is complacency! Hearing others experiences has made be realise that's it's not so straight forward.

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stbernhard

I am in remission and like you have come off Sulfasalzine. Additionally the MTX dose has gradually been reduced to 10mg. Without the medication I probably wouldn't be in remission, however much I contribute myself with diet exercise etc. I wouldn't dream of reducing drugs without talking it through with the RA consultant. I hope you find a solution.

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Cien
Cien
in reply to stbernhard

Me too.

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Lucy11

A little glimpse of my experience.

I started on MTX five years ago.

Two months later started Humira.

Six/seven months later switched to Orencia while maintaining 10 mg MTX.

A year ago I stopped MTX completely and moved the Orencia infusions from every 4 weeks to every 6 weeks with no issues.

I never use Prednisone.

It's nice to be MTX free.

We are currently discussing moving Orencia to every 7 weeks. Its a tough call really. My doctor emphasizes a few points for me:

1. At baseline my anti CCP was very high but my RF was normal as well as all of my inflammatory markers. My CRP has never gone above 0.4. Literally never. Everyones markers are different but his main concern has always been anti CCP which doesn't bode very well for drug cessation but isn't concrete. Nothing's concrete.

2. I presented with bone erosions on day one.

3. I am an endurance athlete and have been able to return to what I love doing. He doesn't want me to flare as it will surly take away my livelihood but leaves it to me to decide.

( I have gone down the route of diet change but I'm with HH, It think it mainly helps me to have no side effect from the drugs)

In the end, I'm a chicken. Going completely drug free is enticing, especially when I've been in remission for so long and feeling so good. Remission for me is no morning stiffness ( which I had an abundance of, although, I never had any noticeable swelling) No need for steroids. No pain. Ability to swim, bike and run- A lot.

At the moment, especially in the winter, I'm sticking with Orencia. I will have a series of X-rays taken ( Last ones were two years ago) and if we see any changes will do ultra sound.

It's a bugger to accept that the drugs are keeping me in remission but the reality is not many people can actually sustain remission without them. I also wasn't diagnosed early. Apparently, that helps a lot. Treat to target early seems to make a big difference, perhaps getting the disease under control very quickly and very early is key? I don't know, but, I sure wish you luck if you choose to eventually try.

Lucy.

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365806
365806
in reply to Lucy11

Lucy thankyou so much for you story...it helps gets things in perspective. Because I have been pain free for so long it just gets you thinking about being drug free. I think the reality is that won't happen. However I can try to be as free as I am able. I have lost a load of weight which definately helps, as does my whole food plant based diet...I will wait and see what my consultant says on thursday

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stbernhard

IMPORTANT! I Came off Sulfasalazine gradually under control of the RA consultant.

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Kalimers65

Great! What form of RA do you have? I have zero negative and I've been blessed with 3 periods of remission with no drugs, my last one lasted 12 years when I was 51 - I'm nearly 67 and it's been back nearly 4 years. I've always eaten very healthily - lots of fruit, veg, fish, chicken and very little red meat. I'm also a great believer in yoga and I love walking too.

Wishing you all the best stbenhard!

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stbernhard

Hi Kalimers, I have forgotten what type of RA I was diagnosed with. Seronegative I think. Your name sound a bit Greeky, like καλή μέρα. Hope you get back to remission soon. All the best.

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Kalimers65

Greece is my second home! In the late 70s I taught English in Kalamata . ‘Kalimers’ was a typo! Are you Greek? Or in love with the country like me?

All the best to you too!

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stbernhard

I've been learning the language for the last five years just because I like learning languages, but I have come to love the country and the people.

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Ninaseven

Yes I’ve tried to reduce but never seems to work for me. The pain always comes back. I know I’d love to be drug free but I’m coming around to fact that I may not be able. Good luck.

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lsb312

I actually just asked my rheumatologist this question . I am on methotrexate and I was symptom free for over a year. She advised against stopping the methotrexate altogether so we experimented with lowering the dose. I was on 20 mg and we gradually lowered the dose over time to 8 mg. At 8 mg my symptoms returned. I just went up to 10, hoping my symptoms disappear again.

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A234

Like you I was told I was told that I was in long term remission , I have been on 15mg methotrexate and 200mg hydroxychloroquin for nearly 10 yrs, in April my rheumy suggested I reduce the Methotrexate to 12.5mg which I did but unfortunately within a couple of months my RA was flaring and I had to go back up to 15mg. I know we are all different and it’s a personal choice, but I wouldn’t consider reducing my meds again.

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365806
365806
in reply to A234

Yes it seems to me from all the feedback that gradually reducing is an idea I can discuss with consultant, rather than withdrawing altogether. I'm glad I asked this question because the feedback has been really useful

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Kalimers65

I was one of the very fortunate people who have had 3 remissions without drugs. I was diagnosed with zero negative RA when i was 38 with 2 young children ( I'm 66 now with 2 grandchildren - time flies). I've had 2 early remissions from getting flu where within an hour of having flu symptoms I could feel all the swelling and pain in both my feet drain out of my body. Each remission lasted about 18 months and I stopped taking my prescribed med (Diclofenac). I read about 20 years ago that a London university/hospital was doing research into the flu virus activating the immune system to act normally. It was in the Sunday Independent.

My last remission lasted 12 years and I took no meds - I was about 51 at the time and the disease just seemed to die. May be hormones played a part here and the change of life. I've always eaten a very healthy diet ( apart from a bit of a cake addiction!) and have eaten lots of fruit, veg, fish and very little red meat. I've also done lots of yoga and walking ( I don't drive) and I think that has helped. Like you, I don't like taking medicines if I have no symptoms but like everyone has said, consult with your specialists.

RA is back now and it's been with me again for nearly 4 years. I've been having an 80% vegan diet with no gluten and coffee and very little alcohol and one or 2 pieces of cake a week. I can't say I'm enjoying my food that much but the swelling and pain has eased.

Wishing you all the best 365806.

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365806
365806
in reply to Kalimers65

Thankyou very much for your input...I am seeing consultant tomorrow so will discuss with him. Good luck with the food...I've been wholefood plant based for 12 months now and I love it...it has definitely helped.

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Kalimers65

Fingers X for you tomorrow. That's great to hear that your plant based diet has helped you a lot. Do you know the Paddison Programme? He is a great advocate of a plant based diet helping RA, lots on youtube.

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