Any advice welcome.

[cycli]

Started lefunomide today. 10mg daily so low dose. How do I know if it is having an effect. Still on 25mg pred. Next reduction supposed to be 22,5mg. Hip, back and shoulder still uncomfortable. Legs unsteady and balance shot. What a bloomin journey. Hoping for some light at the end of the tunnel.

[Koalajane]

I don’t use leflunomide but was under the impression it took a couple of months to start working, sure someone more informed will give more information

[PMRpro Ambassador]

You won't know straight away, some people can feel it working but others just discover that they can taper the dose. Patience.

[cycli in reply to PMRpro]

not my best quality but I'm learning.

[DorsetLady PMRGCAuk volunteer]

Answered in previous post. But just to re-iterate, hope it works for you.

[cycli in reply to DorsetLady]

thanks DL

[Lochy]

I tried Leflunomide for about a year. All the different meds I’ve tried confuse me a bit! I remember it made absolutely no difference to me. I couldn’t taper any quicker, continued to have issues with knees so decided it wasn’t working and gave up. I wasn’t able to taper without symptoms. I’ve now started a biologic Etanercept (last January) and that has been the only thing that has allowed me to taper slowly but surely, with symptoms controlled.

Good luck.

[musicality in reply to Lochy]

Oh good that it's making a difference - hope it continues! U have 2 try the cheaper ones first b 4 they give u the new biologics. This is no good if ur over 70 and may not have time 2 experiment, instead of having something that really works so that u can enjoy ur last few years feeling better than u have for years. As usual the cost is more important than the patient!

[cycli in reply to Lochy]

thankyou for this info.

[Wallysma]

I had your experience on day 1 and day 2 it was 100 times worse. My pain shot up and I was so shakey and off balance I almost fell several times. I called my doc and stopped the med. Be careful. Just check to see if what you are going through is status quo or a decline. You didn't say if the symptoms are your usual or worse...I will say when I posed the question here there were several who had a great result. Good luck with.

Be well.

[cycli in reply to Wallysma]

Current status is that my condition has deteriorayed. It is the myopathy causing loss of balance i am sure. Without a reduction in pred. dose there is no real answer. Hopefully Lefunomide will help. Thanks for the info.

[Wallysma in reply to cycli]

You mean since you started leflunomide? Or before....your PMR symptoms in general have deteriorated. Sorry. I was bad without it and then worse with it by day 2. But again others did really well. I hope that's you. Fingers crossed.🤞...

[cycli in reply to Wallysma]

Only just startred Lef. so condition has been deteriorating prior. fingers crossed it improves.

[Wallysma in reply to cycli]

🤞👍🙏

[Alebeau]

Hi,I took 20 mg leflunomide for about a year (reduced to 10 after neuropathy started in feet then in hands) and while it did help me reduce from 10 to 5.5 I had to stop it as the neuropathy was getting worse.

Sadly after stopping leflunomide my PMR has come back with a vengeance and am now up to 10 mg again.

I feel like I wasted year of just slowly reducing the prednisone and will now have to restart that process.

I have had PMR for over 4 years already so I will be long timer for sure.

Be cautious of side effects such as diarrhea and dizziness 😩 along with neuropathy. Perhaps that won't be a problem at 10 mg.

[cycli in reply to Alebeau]

sorry you are in for long haul. Hope I am not but not looking good at present.

[Manihiki]

I have taken lefludomide for four years with no problems. It took 6 weeks to kick in and then my bloods became stable and I could reduce. A month after starting lefludomide I was put on mycophenolate as well though. I have had flares since but never need the original level of prednisone which makes tapering so much easier.

[cycli in reply to Manihiki]

Need to get to 10mg or less if I have any chance of recovering some muscle .

[Manihiki]

I started with GCA and was on 80 mg prednisone and could not even get to 20 until I started lefludomide but after I started I was able to taper completely off. Lasted 6 months before a flare of PMR and was put back on 20 and the slow taper started again! I have been on prednisone more than 5 years but have got to a point with a recent flare of only needing 10 and tapering 2and a half each week. Now sitting on 5 for a while then I begin again the really slow taper. I have just become reconciled to it.

[cycli in reply to Manihiki]

Thanks for this Manihiki. Useful to know and hopeful

[cycli]

No problems so far I think although my body seems to be "shutting down". Stiff back muscles, very weak legs, hard to get up straighten and get going. Hard to get out of bed. Getting results of blood test today so see if inflammation is back. You've all been there i expect. what a ride eh?

[DorsetLady PMRGCAuk volunteer in reply to cycli]

Sorry to hear this-please jet us know his things go

[cycli in reply to DorsetLady]

will do DL

[PMRpro Ambassador in reply to cycli]

Think I'm there at the moment. Or it could be the weather - snizzling here, snowing proper further south.

[cycli]

S uch a joy ride isn't it. Had a great chat with jinasc yesterday. water froze again and couldn't repressurise but back to normal now thawed. might be movement on my research idea. think cellulitis may still be working its magic.

[cycli]

Just had results of blood test and they didn't do the CRP doh!! ESR is15 and liver is borderline. Next test on 3rd and FtF GP is on the 6th. I think cellulitis is still active and the PMR in back and hips is recurring. What a bloomin struggle.

[DorsetLady PMRGCAuk volunteer in reply to cycli]

Tough times for you -hope things improve -best wishes

[cycli in reply to DorsetLady]

cheers DL. Just updated Dr Plant so just waiting now. I suppose it's feeling so powerless to affect any improvement that grates most