leflunomide

[composition]

Any information from those who are taking this drug and were on Prednisone that did not work? Just started it yesterday and will take both for 1 month then taper off prednisone since relapse of PMR on 20mg. prednisone. The 20 worked at first, tapered off to 15 and then 12.5 and all of a sudden a large rise in pain and sed rate and CRP. I'm not a candidate for the Meth-?

[jinasc]

Leflunomide is a steroid sparing agent. I am surprised you have been told you will be off pred in a month.

As far as I gather you were only diagnosed with PMR last October and reading your post it looks to me as though you have been reducing you dosage far too quickly. 7 months is no time at all. Unfortunately it takes most people a much longer time to get down to 12.5mg.

Normally no more than 10% at a time and then see how it goes. These quick reductions mean you have not got the inflammation under control and it 'flares' up.

As there is currently no known cause and therefore cure, pred is there to help you control the pain until PMR decides to go into remission, just like it decided to come.

Most auto illnesses mean you are in for the long haul, there is no quick fix.

However, I am not a medic, just someone who had GCA for 5 years and learned a whole heap during that time and now into my 8th year of remission.

[composition in reply to jinasc]

oh, dear. Well.......the dr. said a flare to 51 sed rate while taking 20 mg. indicated the steroid wasn't going to work well for me. She won't take the prednisone down quickly...over a period of months but with the Leflunomide. Probably went down too quickly from what I read on this site. The frustration with all of this is immense, as you all know. At the same time I battle gastoparesis and GI issues and try to follow the FODMAP diet.

[piglette in reply to composition]

That is total rubbish. I don’t think my SED rate has ever been much below 50 in four years. The pred works though.

[suzy1959]

I have taken Leflunomide in the past. There is not really any evidence that it works for PMR and it didn't do anything for me other than giving me very high BP- I had a flare as soon as I reduced the pred.. It seems bit premature for you to be trying it? Perhaps you need 20 mgs Pred. at the moment- it is so hard to know. The trouble is these other drugs are pretty toxic too and do not exactly replace the Pred. anyway, they might just enable a bit more tapering if they work at all. Is it possible that you tapered too fast in the beginning and your body is trying to get back to where you started?

Remember, you are still in the very early days of PMR and it takes time to get the hang of it all.

[jinasc]

I read your first post incorrectly, to me it looked as though you had been told to drop the pred after one month.

" Just started it yesterday and will take both for 1 month then taper off prednisone since relapse of PMR on 20mg. prednisone."

So just ignore my post.

[composition in reply to jinasc]

I am always accused of getting my brain ahead of my fingers as I go, go, go. I started on 20 in late Oct I think, then stayed on it until Feb. and went to 15 for one month which was still good w. low sed rate and no pain, then 12. 5 and that was good about 3 weeks when I started in with pain and she ran blood work with a sed rate of 51 and CRP high again. Then she called me and increased back to 20 2 weeks ago and I just saw her yesterday. That's when she said she did not think prednisone was the best option. But she won't take that down for months and very slowly. I am hesitant about the new drug but will give it a try. Thanks!

[Hidden in reply to composition]

That's because 12.5mg was too low. Of course sed rate rises. Your gastoparesis issues won't be helping you absorb pred effectively I would imagine. I was back at 15mg in first 8 months with sed rate of 52. It was only 32 at diagnosis of pmr! I had reduced too far and fast on drs advice. So it's not unusual for people to struggle in the first couple of years and thereafter.

I was put in a dmard after 15months of not getting my sed rate down. It would bounce up at every taper and I was stuck at 14mg for months. All the dmards do us help your body squeeze as much out of the pred as you can. It suppresses immune system more so the pred can control inflammation more effectively (that's the plan anyway). They are powerful drugs and not to be taken lightly at 7mths. I don't know if I would take a dmard if I knew what I know now but the boat seems steady and in 2...yes TWO, years I am down at 6mg and stuck there. That is my sed rate is 10 now having slowly come down. Dmards are not a quick fix to get you off pred. I am ok at 6mg in terms of still being on pred. Its lower than body would produce. As I say there is NO quick fix.

[PMRpro Ambassador in reply to Hidden]

"Dmards are not a quick fix to get you off pred"

Try telling THAT to some doctors!!

[composition in reply to Hidden]

also forgot to add i"ve have Sjogrens Syndrome for years...no medication, just dealt with it. Sounds like I am a mess, but I've never missed a beat in life. With 3 other women, ages 87 and 64 and me 3 years ago, we painted the Daviess County Museum in Indiana 200 gallons of paint, a 200 yr. old building with monster high ceilings. I guess I just need to take a deep breath and face facts, right? I have emailed the GI doctor IU medical center where she monitors the gastroparesis and GI issues whether I can still use Xifaxan for control of these problems and take the Leflunomide since I've read the gut side effects, the last thing I need. My medicine list is growing and am almost ready to line them on a fencepost and take aim with a slingshot.

[Hidden in reply to composition]

Yes. I know that feeling. You will feel better but you are early in the pmr I am afraid. You can still do things as long as you plan breaks. Hopefully you will find a drug regime that suits you. Sometimes you have to try to see what suits you in the long run. It's just the rheumies/drs always seem to present dmards as a fast way to reduce pred and I still don't know if that's the case for me, I don't really know what's us better but feel okay so you get scared to upset the applecart!

[PMRpro Ambassador in reply to composition]

So it was 12.5mg that was not enough, not 20mg - adds to my suspicions of bias against pred. The first 18 months are tricky - and that is when SLOW tapering is needed.

[jinasc in reply to composition]

Was it the same Rheumy who reduced you too quickly? I would take good odds it was.

Look at the side effects of any Dmard offered..........count them up.

Add the 83 known side effects of Pred (plus 1 which we call steroid brain fog or treacle brain) . Bearing in mind that pred is the oldest of them all and all the side effects are known.

Then think, do I want my body to cope with more side effects in the hope that the Dmard will enable you to reduce your pred. Which, possibly if you, had been reduced more slowly would not have run into this problem.

YOUR DECISION, YOUR BODY ALWAYS in conjunction with the knowledge you have gained.

PS: Here is part of my tale. I had GCA only.

I went to GP and I had a kidney infection so a blood test and antibiotics. That was a Monday.

On the Wednesday my GP knocked on my door at 8.30am worried to death because both CRP and ESR were sky high and he was worried about the GCA. I looked at him and said come in.............gave him a cup of tea and then said 'Saw you on Monday and you started me on anti-biotics because my eyes were yellow'. He then heaved a sigh of relief and said I clean forgot. I looked at the results and thought problem with GCA and read no further.

I loved that man............I was his very first patient with GCA and he was then 51. They had only 3 other people in the practice with PMR. Now that practice is spot on with diagnosing both.

CRP and ESR are indicators that something is going on..........then they have to find out what.

Some people's CRP and/or ESR never move.

Apologies for length and I totally agree with PMRpro's last sentence, beginning with OTOH.

[PMRpro Ambassador]

I'd disagree the leflunomide was for non-efficacy of pred. Pred works when taken at the right dose and I don't find a return of pain surprising when a taper of 20/15/12.5 is tried. And there is no evidence that leflunomide replaces pred entirely in PMR - only in other possible causes of the symptoms.

If what you have is large vessel vasculitis or GCA, then 20mg of pred may well not be enough to manage the inflammation. I'd say that doctor is allowing a prejudice against pred to colour her prescribing habit. The trouble is - it is the patient who is on the receiving end.

I DO hope it works for you - I have a friend in Scotland who finds it wonderful but at the full dose she developed neuropathy so she is trying a half dose plus pred. When she stopped the leflunomide as a result of the neuropathy the PMR symptoms were back in all their glory and needing well above 10mg pred - so obviously it does work in some forms of PMR. OTOH, I'll take potential pred problems over her lefl adverse effects any day.

[Jackoh]

I would agree with what has been said to you before. I was on lefludomide for about 18 months. At first I didn’t have any side effects although I know tummy problems can be one of them so not particularly helpful for you?

I continued to take the lefludomide as I had been stuck at 20 mg for sometime (GCA and PMR) and I felt I needed to give it a go. I still flared on it, I did manage to reduce down to 15mg but it took I believe a longer amount of time than if I had just kept trying on a DSNS taper because I had quite a few infections and had to keep increasing the steroids to cope with infections. I stopped taking it this January as I had developed peripheral neuropathy in one foot and in the calf of the other leg. Since then I have managed to reduce to 12 mg, without the lefludomide but just using the DSNS method ( I was doing this on lefludomide too) I think as the condition waxed and wanes this obviously has just been a good time for reducing.

I had been on steroids for about 2 and a half years before I started lefludomide and was stuck on 20 mg. I can’t say anything regarding CRP and ESR levels because mine never register high. I personally feel that your taper was too much to begin with. Try a slower taper, say 1 mg per month and listen to your body. I also feel that it is too early in the game to consider lefludomide as this can bring its own problems. I personally feel that your doctor is panicking re your steroids without possibly giving you the chance to slowly reduce before starting a steroid sparer. It seems early days in the scheme of things, as I believe you have only had PMR for 7 months. I would say did 20 mg control the pain? Did you say that you will be using both for a month and then start reduction? My consultant said I would have to give the lefludomide at least two months to get into my system before attempting a reduction. Presumably as you have been prescribed Lefludomide you are under a consultant? As I understand it is the Consultant that has to prescribe this? Just out of interest if you are under a Consultant why were you referred with PMR? Is it because of your other conditions?