Went for my appointment yesterday, my rheumy said since I have been in remission for so many years, she suggested below and told me to decide:
1. Reduce Mtx to 5 mg per week
2. Stop leflunomide
I told her to do the best for me as she is the best person to know what is the best thing to do for me.
She chose 2 and told me to continue with leflunomide again if I do flare in future. She said that this is the process to further reduce DMARDs for me.
Congratulations!. That’s so good to know.
Congratulations! My Rheumy has recently reduced the MTX from 12.5mg to 10mg (March 2021). I continue to do my Pilates daily but now feel more ache and pain. Do you have the same experience? Since I am sero positive, I was told it is more difficult to control the symptoms so the reduction has to be gradual.
I am sorry you experience the pain again. So far after my remission, I do not have any pain. I hope I can continue to be the same until the last day.
I am a sero negative, that could be the reason why my condition can be control better. Suggest to talk to your rheumy to see how to improve your situation.
As for my case, my rheumy did tell me to get back to leflunomide if I experience any pain. This is a test for me and my rheumy also not sure if it will be successful.
Thank you Amy. I had a telephone consultation since. My Rheumatologist thought it is osteoarthritis rather than RA. Now I am carrying on with the 10mg MTX. With my Rheumatologist’s help I am aiming to reduce it further in the future. 🤞🤞🤞
Do you mean you have osteoarthritis rather than RA? Is the treatment the same? Or you have both? Never ending problem we have.
I think I may have both. My right shoulder pain occurred after reducing the MTX from 12.5 to 10mg and after I was working hard in the kitchen. It was gradually eased after 5 Chiropratic treatments. Based on that the clinical nurse specialist during the telephone consultation told me the pain was mechanical and not inflammatory. He then concluded it was not a flare and advised me to keep the MTx 10mg as it is. I will have a face to face consultation with my Rheumatologist in August to investigate it further.
Thats good news to hear.xxx
That's great news Amy_Lee, I'm really pleased for you. xx
Thank you so much, Sprincross. I hope your condition can be as good if not better.
Many thanks Amy_Lee. xx
Great news!
Thank you so much. This is what we are looking for being a RA patient really.
Congrats! Happy for you.
I’m glad your doctor is being cautious. I was told to stop all treatment some ten years ago and really suffered. Found a careful consultant who has been much better.
I am glad you find a good consultant now and I hope you can go into remission eventually.
My rheumy did mention about drug free remission to me few years ago but she did warn me about the possible flare too. After so many years, now only she decided to stop leflunomide. I hope I can continue to be as good. I am also quite worry about the possible flare as I do not want to go through the same painful experience again.
I am very sorry those who suffer for years and have a lot of joints damaged. It is so hard to live with such a pain daily.
😊
That's great news Amy. Hope you continue to enjoy your remission for long time to come!
Wow! Great news. My medication have been reduced over the years as well. I was on triple therapy in 2017. Currently, I am only on 5 mg of MTX. Stopped plaquenil completely for 3 weeks now due to some eye issues. All is well, fingers crossed. I am waiting for the 6 weeks mark as I believe the half life of plaquenil is 6 weeks.🤞🤞🤞
I was diagnosed in 2014, much longer than you. Only this round my rheumy decided to stop leflunomide. I think you have been doing very well too. Are you also in remission without any pain?
We all are so different, many suffer for years and cannot get into remission. But some do very well like us, I think we are blessed in fact.
Hi Amy, yes I am thankful thatI I am in remission without any pain and am very active. I am blessed, that I was diagnosed very early and was in triple therapy within a year. My rheumatologist’s mantra was to treat it aggressively to stop it from progressing. At one point, she was even considering me going on biologic if it was not controlled (thank God, I didn’t have to go that route). I have been weaning off the medications slowly as she thinks I’m a good candidate for stopping all medications completely sometime in the future. Sounds like have a good rheumatologist who wants to achieve the same goal. Good luck and keep us updated with your progress.
I stopped Hydroxychloroquine as well 2 years ago due to retina toxicity secondary to it. It was fine for me. I hope it is the same to you Canadiangee 🤞
Good to have a very positive sharing from you, it certainly gives me a very good confidence to look ahead. But I do have cholesterol issue with mtx, and I would like to get some responses from those who are share the same problem. I have been trying to Google to see what happen and what I can do to minimize the problem.
I have not paid much attention to my cholesterol level as It was never high. I am on atorvastatin 10mg daily as a precautionary measure because family history of heart disease. If agreeable with my Gp, I will have it examined in my next blood test. It is good to know this could be one of the side effects of MTX. Best of luck to you Amy.
Thank you Cien, I am quite happy just taking 5 mg of methotrexate weekly. 😀
May I ask how long you were on Triple Therapy? I am assuming you slowly moved upto Triple T by adding one med after other. I was diagnosed in 2018 and started with Mtx and was well controlled on it till Dec 2020 now we added HCQ 2 moths back. So your experience gives me and all of us hope.Good luck with getting off of Plaquenil. Long may your remission continue!
Hi Ketiv, Thanks for your kind words. I was diagnosed in June 2016. Started with plaquenil in June, then in August methotrexate of 25mg was added, in January 2017 Arava (leflunomide) was added as I was not 100% pain free. Basically I was on triple therapy within year of being diagnosed. In summer of 2018, I started slowly lowering dosages and stopping medications. Currently, I am only on 5 mg of methotrexate weekly.
My rheumatologist believes in aggressive treatment to stop it from progressing. I was apprehensive taking so many medications initially and her wise advice to me were “once your joints are damaged, it’s too late and nothing cannot fix it”. I hope that adding HCQ does the trick for you and puts you in remission too. Good luck.
Great new AmyLee - there is hope 😊 remind me, please, are you on a biologic as well? If so, now you just take the biologic solely?
Thank you. There is always hope ahead. Many of us go back to our normal life after sometimes. I am very lucky to be in remission after a year and a half treatment. I am on oral mtx and leflunomide, not on any biologic. Now that I stop leflunomide, I only on 7.5 mg mtx now. But again, my rheumy did say that if I do experience any flare, I must continue leflunomide immediately.
That’s great news!
Such positive news Amy. So good to hear.
I am very happy with it also. Again, there is a risk to take also going into this.
Leflunomide
Leflunomide, Uncommon Side Effect
Leflunomide? 
So...change of plan starting Leflunomide (not Biologics)
