28/05/2021 - Stopping Leflunomide Experience - NRAS

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28/05/2021 - Stopping Leflunomide Experience

Amy_Lee profile image
Amy_Lee

I remember that I posted on 06/04/2021 that I was told to stop leflunomide as my condition is under very well control. I would like to share my experience after more than 1 1/2 months going without leflunomide but only methotrexate.

I think started last 2 weeks, instead of only my left foot was a bit painful when pressed, my right foot starts to feel the same since. My left foot has been a bit painful for more than a year, my rheumy sent me for a MRI and my feet were both look good.

In addition, I find my left shoulder starts to feel a bit funny too. The popping sound getting a lot more often when I move my left hand also. My right hand is still okay without the popping sound at the moment. I remember during my recovery process, a lot of popping sound in my hands and legs but slowly when I got better, the sound disappeared too. Recently I do find that my left hand starts to give me the popping sound very often again.

I think something is not right and I do not think it is the right time to go without leflunomide. To avoid the possible relapse, I decided to take the leflunomide again. To go back to my previous remission condition, I am okay to have the double agents treatment - methotrexate and leflunomide.

31 Replies

I think within time most RA returns (takes longer usually if you’re on a biologic which suppresses RA long term like mine .. Rtx) but the disease activity of R.A. usually returns if not suppressed by meds. I hope you can get back on the steady path you were on.

Amy_Lee profile image
Amy_Lee in reply to Neonkittie17

I started the leflunomide on 28/5, I do feel better these few days. But there are some other issues which I will share again after I experience more. Sometimes we need to read the experience of others to know what do expect. RA journey is not simple, it is just too complicated indeed.

Neonkittie17 profile image
Neonkittie17 in reply to Amy_Lee

I know Leflunomide and myself parted company after a week or so due to sickness, so it’s not easy I agree to even tolerate a med at times let alone the pain and restriction of movement we can have too. 💗

Amy_Lee profile image
Amy_Lee in reply to Neonkittie17

Oh, that will be good to see if you can advise. May I know if leflunomide has anything to do with shingles after stopping it?

Neonkittie17 profile image
Neonkittie17 in reply to Amy_Lee

I know I was told by a rheumy that you are twice as likely to get shingles if you have R.A. I have had R.A. since 1995 and didn’t get shingles until 2018 or indeed much of anything until I took Rtx which obviously lowers the immune a lot. It could be that Leflun makes you more prone to shingles? I didn’t take it long enough. I got shingles mildly in November 2018 just after a Rtx infusion. Aciclovir helped a lot.

Amy_Lee profile image
Amy_Lee in reply to Neonkittie17

My rheumy precribed Aciclovir and Allercin for me to take. The dermatologist prescribed the fusidic cream currently. I have been scheduled for my covid vaccination, because of the shingles, my rheumy wanted the vaccination to be cancelled and will monitor my condition until further action.

Neonkittie17 profile image
Neonkittie17 in reply to Amy_Lee

I hope your shingles are soon under control. 🙏🏻💗

Amy_Lee profile image
Amy_Lee in reply to Neonkittie17

I was told to send over the photo of the shingles after 2 week and see the dermatologist after 3 weeks to ensure the shingles healed well before any plan for my vaccination.

Thanks for sharing your experience of stopping leflunomide. I'm on a half dose (along with toficitinib) and sometimes wonder if it is actually contributing anything positive to my treatment. I'm not well controlled anyway and have no intention of stopping it, but it is interesting to hear of your experience.

Amy_Lee profile image
Amy_Lee in reply to Mmrr

My RA has been in very good control after I was in remission. I was in remission since Nov 2015, hence after reducing mtx and leflunomide, my condition has been as good hence my rheumy thought I might be the right candidate to stop leflunomide. Unfortunately, I do feel something not right after a month and a half treatment and I do not want to live in denial so I decided to add back to leflunomide. May be I still have to wait a little long before I can do that. I was lucky that my rheumy did tell me to get back to leflunomide if I did feel any possible relapse.

I hope you will get some relief soon. All these medicines need sometimes to kick in. As you can see, without the support of leflunomide, I do feel a bit difference. Now that I add it back, I can feel my body has gone back to very much normal again. However, the popping sound on my left hand is still there, I think I need sometimes to get back to the very normal again.

Sorry to hear you have had to start leflunomide again. RA is a complicated disease. At least you tried thats what counts. I remember that popping noise. Use to happen on my knees, shoulders upper arms and feet everytime I moved. Has gone now that i take Mtx. But I still hear that noise when I exercise on my feet. My feet are still giving me problems more then the rest of my body. RA started on my feet first and still seems to be there just not as bad as before. Thank you for the update.

Amy_Lee profile image
Amy_Lee in reply to Zara0123

When I heard the popping sound, even my daughter could hear it when she was beside me, I knew the RA may be back again. Couple with the little pain here and there, I know I must do something to avoid the relapse.

Yes, the popping sound is one of the very good indicator of the RA flare or relapse indeed. We learn along the way really.

I’ve been taking leflunomide for well over 8 years, it first being prescribed as a steroid sparer. I’ve come off it twice, and each time had to resume. The first time, was because I felt it wasn’t working, and I did have ankle issues. However as time went on, it became apparent that I needed this drug, so restarted, and eventually got back to a 20mg dose. The second time was because the rheumy nurses said to stop it for 2 weeks because of blood results, so thought to myself oh I don’t think I need this, however have again restarted and am now taking alt doses of 10/20mg. It does take a little while to get into your system, but so far have managed to keep to this level. The steroid sparer aspect didn’t seem to work though, as it has taken me years to get to 3 1/2 mg of steroids. I’ve never had this popping sound, so I’ll look out for that one.

Hope you manage to get it under control again.

Amy_Lee profile image
Amy_Lee in reply to Lizzery

Thank you for the great information shared above. We want so much to get rid of all these medicines, unfortunately it is quite hard to do without. I would prefer to take leflunomide than long term steroid really. I think I will have to be stuck for a while with leflunomide if not for life. But I am ok with it at the 10 mg daily though rather than having the pain all over.

Yes, just keep an eye on the popping sound. This is one of the indicator of RA flares for me.

smilelines profile image
smilelines in reply to Lizzery

HI. Just curious how you take your 10mg/20mg alternating. I am on the same and take one in the morning, one at night and the next day I take it at dinner. So every 15 hours or so.

Lizzery profile image
Lizzery in reply to smilelines

Hi, I just take 10mg one morning and 20mg the next. I assume it just sort of evens out, as Leflunomide stays in your system a long time anyway. Umm it may be that it’s not though as I do have a few niggles, which could be getting older or not enough Leflunomide to cover. It’s all a bit of a mystery at times!

smilelines profile image
smilelines in reply to Lizzery

Not really sure what I am suppose to do because she reduced me from 20mg a day and said to do the alternating days and gave me 10mg tablets. She told be not to take the 20mg tablets that I had leftover from before. Made no sense to me so I just decided to space them out but it does get a bit confusing.🤷‍♀️

Lizzery profile image
Lizzery in reply to smilelines

My rheumy just said to take alternate days, and didn’t say anything about spacing. I had read somewhere that there were 15mg tablets but when I enquired was told that there wasn’t. Yes confusing is the word, as is the way of this disease at times.

Amy_Lee profile image
Amy_Lee in reply to Lizzery

Wow! I would take 10 mg today and 20 mg the next morning instead of spacing them. Again it makes no sense not to continue the old 20 mg unless they are of different brand hence may have some slight effect.

Thank you for sharing your experience with us. I had reduced my MTX from 12.5mg to 10mg and since then I have more pain appearing such as shoulder blade pain etc. According to my Chiropractor I was doing too much and also the consequences of bad posture. I am better after 10 treatments but it keeps occurring when I use my right hand too much such as cooking etc. I had an email back from the Rheumy nurse saying it is unrelated to RA because I get better with the Chiro treatment. I am having my blood test in 2 weeks' time and F2F consultation with my Rheumy to find out whether I should go back to MTX 12.5mg. What is your opinion on this?

Amy_Lee profile image
Amy_Lee in reply to Cien

Seriously, with my experience going off leflunomide, I think it is better to go back to 12.5 mg of mtx. I think if it improves after the Chiropractor provides you with the treatment, it should stay and not on and off coming back again. My suggestion is not to take any risk.

Before I went off the leflunomide, my rheumy gave me the choice to further reduce mtx from 7.50 mg to 5 mg and maintained leflunomide or to maintained 7.50 mg mtx and stopped leflunomide. I told her to decide for me as I trust she knows best to help me.

After she decided to stop the leflunomide, she did warn me of the possible relapse and told me to take leflunomide back immediately.

Cien profile image
Cien in reply to Amy_Lee

Thank you Amy. It is very useful to hear your experience and opinion. I will wait till August to discuss it with my rheumatologist to decide exactly what to do next.

Amy_Lee profile image
Amy_Lee in reply to Cien

Yes, discuss with your rheumy and find the best solution. Most importantly not to take any risk.

Canadiangeese profile image
Canadiangeese in reply to Cien

Cien, see my response to Amy below re medicated remission. Hopefully it will help you and anyone who are on medicated remission. Regards.

Cien profile image
Cien in reply to Canadiangeese

Thank you very much Canadiangeese. Your response is very helpful and much appreciated. I will listen to my body and discuss the issue with my Rheumatologist in August. Lately my symptoms seem to be settling down probably due to the warm weather.

Canadiangeese profile image
Canadiangeese in reply to Cien

You’re welcome. Good to hear your pain is better. We are all here to help each other with whatever info we have at our disposal. Take care.

Amy you should carry on taking leflunomide if you feel better with it

Amy_Lee profile image
Amy_Lee in reply to Sarmita50

Agree, I started to take it again on 28/5 when I felt something not right after stopping it for about 1 1/2 months.

It is indeed a testing journey for me to go through this. I had told my rheumy 3 days ago on this.

Hoping the leflunimide is kicking in and you are feeling well.😀

Amy_Lee profile image
Amy_Lee in reply to smilelines

I did feel better but I develop shingles which I like to have someone to share the experience with me. I will put up another post on that few more days later. Anyhow, thank you for the response.

Sorry to hear you getting off leflunomide was not successful. It’s better to be in medicated remission than trying to stop medications and having this RD resurface again. I am currently on just 5 mg of MTX down from a triple therapy a few years ago. My Rheumy wants me to eventually wean off all medications eventually. However my son who is a Dr. of internal/gastrointestinal medicine has requested me to challenge my rheumy if she requests me stop MTX in future. His reasoning for me is that I am doing so well on just low dose MTX and should stay the course as he has seen many patients in his practice for various other conditions that went off their medications but only to return with major flares that he has to put them on biologics eventually to control it. Also, he has consulted with some of his colleagues who are Rheumatologist and they agree with him (different Drs. have different train of thoughts). What I’m trying to say is although we all want to reduce/stop medications at some point, it may not be the best course of actions. Glad you listened to your body and took the appropriate course of action. Take care and keep us updated.

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