Posted , 12 users are following.
HI, has anyone been on Leflunomide 10 mg to help to reduce your prednisolone . Owing to being on Prednisolone for 6 yrs , over the years i have reduced to 4 mg, then having to increase back up, my consultant as now suggested to try me with Leflunomide can anyone let me know if hey have taken this and also what results they have had.
0 likes, 12 replies
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EileenH greenwood11
Posted
Some doctors claim good results - and a study achieved remission in 21 out of 23 subjects. I understand one stopped because of intolerable adverse effects and 1 didn't respond I think. I have a friend who tried it and it was very effective, she said she felt totally different, it felt like a switch flicking and she felt well for the first time for years. Unfortunately she developed neuropathy from the leflunomide and had to stop the 20mg dose she was on. However, she had to go back to a PMR level of pred and has asked to try 10mg to see if that avoids the neuropathy.
Two well respected rheumies in the field in the UK consider it to be the only steroid sparer worth considering (other than tocilizumab that is). OTOH, others swear by methotrexate!
I tried methotrexate and said no thanks. I haven't had leflunomide suggested - I am doubtful I would want to try it. And I have been on pred for over 9 years.
pam7653 greenwood11
Posted
Greenwood,
You beat me to it! I also have been on Prednizone for going on 6 years . I'm trying to get under 10 mg. I've tried methotroxate and hydroxychloroquine. Both had side effects I could not handle . Now my Rhumy wants me to try Leflunomide . I too have hesitated. I will be waiting for the responses.
greenwood11 pam7653
Posted
Hi , yes i also have tried methotroxate and also had side effects, my consultant as suggested 10 mg Leflunomide ,I believe i will try this and hope it reduces my Prednislone.
celia14153 greenwood11
Posted
Do let us know how it goes. Good luck!
catherine34621 greenwood11
Posted
greenwood11 Yes, I couldn't get down to less than 20mgs. of Pred. for ages, I was sent to a new Consultant and she put me on 10mgs. of Leflunomide and reduced the Pred. gradually and the Leflu. was increased to 20mgs besides the Pred. I am now down to 4mgs. of Pred. tapering at 1mg. per month. The Leflunomide hasn't so far had any adverse effects, It was stopped at Christmas when I was in Hospital with Flu and Pneumonia, but I was put back on it when I came out after scans, all in all it has so far been o.k. for me.
greenwood11 catherine34621
Posted
HI, Thank you for your reply, your the only one in the group that i have heard thats been on Leflunomide . I will start on monday with 10mg .
greenwood11
Posted
HI , thank you for your reply, your the only one in the group thats i have heard thats been on Leflunomide . I will start with 10 mg on monday.
pam7653 greenwood11
Posted
Please keep us posted because its my last resort. I'm at 10mg right now and dropping slowly. Does anyone know how long you must be on it to see results? GOOD LUCK!
catherine34621 pam7653
Posted
In my case, I started Leflu. in Jan.2018, I was also taking 17.5mgs of Pred. The Consultant upped the dose to 20mgs. in July 2018 alongside 10mgs. of Pred.as I said previously, I am now on the same dose of 20mgs. of Leflu. and 4mgs. of Pred. I have been slowly decreasing the Pred. having been unable to get down from 20mgs. I can only say, in my experience, the Leflu. has worked wonders.
pam7653 greenwood11
Posted
can you say how long you were on it before you saw results? Did you notice any side effects?
catherine34621 greenwood11
Posted
Pam 7653 my blood results showed a drop almost straight away, and continued and are now fine, I haven't had any side effects that Iv'e noticed, when I was in the Hospital at Christmas , my liver function tests weren't good, but it was the virus that I had that was causing that, I had my normal tests done on leaving Hospital and afterwards and they were normal again. I got the go ahead to start Leflu. again. I'm so glad that I didn't have a flair with all that was going on!
pam7653 greenwood11
Posted
Thank you It gives me hope. I haven't been under 10 mg in two years. I'm coming down from a flare at 20mg and have seen a chiropractor for my left hip, my main area to flare. Its now under control. I know once I go below 10 I'll start struggling, so I want to at least try this.
My triglyceride and cholesterol numbers are high, all caused by the prednizone. I've got to do something now! I'll keep you all posted. 6th year on prednizone!