Thanks for your help in answering this question. It seems Leflunomide is the only real contender. So much so that my cynical self wonders if the other two are only there to give the illusion of choice! Any more info about your experience of Leflunomide is very welcome. Not rushing into anything, and not before other issues, e.g. fractured vertebra, are resolved or explained or hopefully improved.
It’s so reassuring to have this place to come to and I’m not now feeling overwhelmed.
To be fair, I think some doctors have their favourites because they have used them occasionally and the patient got to lower pred. But without studies - they can't know if it was their drug of choice or coincidence.
Now you will see lots of relevant posts about leflunomide ...
I have been on Leflunomide for over a year now and think it helps as a steroid sparer for me. About 2 months after the dose was reduced from 20mg to 10mg I had a flare and needed to increase the pred. I did not get back to as low pred as I had been on. My rheumy linked the flare to the reduced Leflunomide and put it back up to 20mg. Four weeks later I was able to resume my very slow and cautious tapering schedule. Useful to know that Leflunomide is slow to kick in and also reduced dose is slow to show an effect.
The side effects on bowels I find are manageable, and helped by taking a daily Colpermin or two, which is only pepermint, so a very gentle medication.
Thanks, good to have a positive experience into the mix. Hope it goes on working for you
I have been taking leflunomide for more than 15 years as a disease modifying drug (DMD) for rheumatoid arthritis. I developed PMR about 10 years later.
So as a DMD, Leflunomide has been almost ideal. It stopped my deterioration and is still helping to keep it at bay. Its effect has lessened over the years and now I take a biological to help.
As you have probably read, side effects are many and some are scary. I started on the 20mg dose I still take and was monitored at the hospital Outpatients weekly for 2 months. I did have quite urgent diarrhoea in the early days. It took some months to clear entirely.
Monitoring was transferred to GPs and I had 2 monthly, now changed to 3 monthly blood tests. Liver tests periodically show up potentially worrying results. I have been sent for ultrasound follow up, latest quite recently, which reveal a fairly healthy age appropriate liver. It's possible that my enormous gall stone could be responsible, but Leflunomide is known to cause liver issues. Anyway, blood results always return to normal after a month or two.
Other side effects - I have gradually lost some sensation in the tips of my fingers and toes. I have developed a bowel condition that means some of the nerves and muscles are not working properly. This could be diabetes related, although now my steroid use is much reduced, my sugar level is at the "pre diabetes" level.
So overall, I am happy that I am taking Leflunomide. It has ameliorated my RA symptoms for many years and such side effects as I experience, I can accept and manage. However, it didn't prevent me developing PMR or stop me needing to take 40mg of steroids at one point during my PMR journey. I'm not sure it helped me reduce to the 1mg I take now, either.
Thank you for your detailed response. It’s obviously a very mixed bag! So glad it is keeping your RA in check, making the side effects worth it. As I don’t have RA, I’m not sure it’s recommending itself for PMR or steroid reduction. What you say about the liver concerns me, especially as I like the odd glass or two of wine! Has that been a factor of your experience?
I pretty much gave up drinking after the first liver scare. Prior to Leflunomide, I took methotrexate for a few years, which I knew to be toxic. It didn't have the desired effect on my disease, so I stopped that. I tell you this, to explain why I have been quite careful of my liver for a long time. I only drink when I want one - a gin & tonic, nice champagne or some good red wine. I only have one, unless there is a bottle of wine on the table, when I will take a 1/4 glass at a time. It works for me, but it helps that there are quite good alcohol free gins and fruit ciders around.
To be honest, I don't understand the thinking about giving Leflunomide or methotrexate as steroid sparing medications. Both are pretty difficult to tolerate while steroids are more of a natural substance produced by one's own body. I appreciate that too many for too long produce nasty side effects (as I said, I have steroid induced diabetes) but as one who has experienced both and is advised by Drs I respect, I think that long term use of steroids below 5mg daily, is probably the best option.
That is so interesting and helpful! I do agree with you. If it isn’t going to help reduce, why introduce a whole new set of potential problems?! Mind you, I’m a long way off 5mg, teetering between 15 and 20 which is too high. Like what you say about the alcohol. Quality not quantity! I’m completely off it at the moment but not likely to last. At least the stress in my life is much less now, so maybe I have a better chance of reducing without a ‘helper’. Fingers crossed and hope it goes on working for you. You seemed to have a good system.
Just keep creeping down. There's really good advice on here about tapering, it helped me down from 40mg, so I'm sure when you're feeling good, you can taper too.
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