Lefluonomide added

male81 on Pred for 4years,down to 10mg DSNS method. Consultant requires me to go faster and has prescribed Lefluonomide-10 mg slow uptake and then 20mg.Good people your thoughts and advice, would be most welcome. John.- the consultant is using a Registrar to help- Dr Sin. Consultant is much in the background. but she puts it over ,but also listens. Knows little about the finer points( as we know) of PMRGC and I am passing on info to her- info re PMRGC Auk ,DSNS, Kate Gilbert's book ,and Dr G.................the expert in our field of pain and suffering .-nothing personal and have yet to pass it on- and will not if you say so. But thought this base knowledge to here would help those that finish up in front of her and her learning colleagues.John

[SheffieldJane]

Hi Scubadiver! We haven't heard from you in a while. You've done pretty well to get to 10 mgs but a lot of us struggle with the next DSNS reduction and some people go down by 0.5 ( half tablets) mgs. At a time.

Personally I would be very resistant to introducing another drug into the picture but I have no experience of Lefluonomide. Has your consultant or Dr Sin shared their particular concerns for you with Pred. Or is it the usual, they just want us all off it.

You are quite right to educate your doctors. This is a relatively rare disease that hasn't received the attention it warrants.

I wish you the very best of luck with the next bit. I hope people familiar with your steroid sparing drug will come forward.

[PMRpro Ambassador]

Prof Dasgupta did a prospective trial in Southend with 23 patients who were given leflunomide. 22 of them went into remission quite quickly if I remember rightly. One dropped out because of the side effects and she has written a bit about her experience on one of the forums (sorry, can't remember which or when). Others experienced very difficult side effects but stuck it out. I am told Dr Rod Hughes seems to be of the opinion that the only "steroid-sparer" worth its name is leflunomide.

But despite this - it doesn't even get a mention in the 2015 International Guidelines for management of PMR. I have come across a few people on the forums who were put on it and had to stop. I have also come across I think 1 person for whom it apparently helped.

[Hidden in reply to PMRpro]

PMRpro /Jackoh I have been patient and been taking the Lefluonmide 9am with Prednislone 6.30 am -5mg-for a month now and have started 10mg. I noticed I was somewhat 'high. and doing this and that and more all the time. Bought the car which had been talked about for weeks etc etc but at the same time noticed other matters eg. bruising more easily, putting on weight ,more tired. Now on 10mg and such is now getting worst. Tired, loss of words, names etc on a further higher plane and all this makes me quite ill, swimming is questioned all the time. 2wk bloods are ok ,blood pressure fine although at times low-90/76 pulse 50. I know I am 81 but these changes seem to come with the LEFLU............Don't expect you to be Dorters etc but have you experience, heard or otherwise-is this to be expected?-I see the consultant at the end of the month, it will be alright if I see his Registrar she will listen,but the consultant...................he would most likely say -did you speak to the Dr? I did but it is not her field but she is very good.

[PMRpro Ambassador in reply to Hidden]

I honestly don't know - but in my book, things that appear soon after starting a new drug have to be put down to that until proven otherwise. And if you don't feel well, I would say thanks but no thanks.

[Jackoh]

Hi Scubadiver,

I can only talk from my own experience. I have GCA/PMR and have been stuck now on 19/20 mg for a year. My Consultant is Dr Rod Hughes so he suggested taking Leflounomide to aid my taper. I have been on 20 mg of Leflounomide for about 3 /4 months now. I haven't had any bad side effects but if I'm honest I don't know if it has a positive effect either- I think it is too soon to tell. I started on 20mg as my body seems to metabolise all these drugs well but then doesn't like to relinquish them - or so it seems!! I had no stomach problems, I did have some high blood pressure but not on a regular basis. I have been having bloods done every two weeks up to now to check full blood count and liver function and that has been ok. I will continue now with blood tests every 4 weeks. I was advised by Ron Hughes not to taper for the first two months on Leflounomide to give it chance to work. I have been using the DSNS method and reducing by 1mg per month. I haven't been able to continue my taper at the mo down to 18 mg as I have a chest infection but that will be the litmus test for me as I have got stuck there before with a return of symptoms. I personally didn't want to throw another drug into the mix but felt that I had to give this a go as I was concerned that I had been at quite a relatively highish dose for sometime. Again personally I think had I stuck at 10 mg I don't know if I would have considered taking it as the less drugs the better I tend to feel- but that obviously is just my own opinion. It really has to be a personal decision doesn't it? Did you feel happy trying to go down from 10 mg in half mg tapers using DSNS method? Again as we've said before on this site - your Rheumy may want you to reduce quickly but the PMR dictates. If you type in Leflounomide in the search engine on this site other folks experiences come up - perhaps more knowledgeable than me because they have been on it a longer time. Let us know how you get on.

[Hidden]

Jackoh, and PMRPro, Thank you both. John