Leflumonide

[Howard523]

Has anyone any information on leflumonide I have been prescribed this and want to know what it is for. Any help appreciated

[Celtic PMRGCAuk volunteer]

Howard, if you are on steroids for either PMR or GCA, or both, and are experiencing difficulties in reducing the steroid dose, sometimes a a DMARD (disease-modifying anti-rheumatic drug) such as Leflunomide is prescribed in the hope of making it easier to reduce the steroids. However, often the reason for people having difficulty reducing the steroid dose in the first place is simply because they may have been advised to reduce too quickly from the starting dose and by too large a decrement. It can take 6 weeks or more before Leflunomide produces any benefit.

[Howard523 in reply to Celtic]

Thanks for that

[Runrig01]

Lefllunomide is what is known as a DMARD (Disease Modifying Anti Rheumatic Drug), which Rheumatologists sometimes prescribe to help with tapering steroids. If you have been on Prednisolone for a year, or are struggling to reduce, a DMARD is often suggested. The idea is to reduce the cumulative dose of the Prednisolobe and thereby reduce the side effects that occur with long term Pred. It takes around 6 weeks before you may feel any benefit. It requires you to have monthly blood monitoring, as DMARDS come with there own list of side effects, one of which is liver damage. The good thing though is if problems are found with blood tests Leflunomide can be stopped immediately.

I only know of 1 person who used it, and i don't think she found any benefit, but I'm sure she will be along shortly to tell you her story.

I take a different DMARDS called Azathioprine and have found it useful for my GCA symptoms but not my PMR symptoms.

I have attached a link to the leaflet published by arthritis research charity:

arthritisresearchuk.org/~/m...

Hope this has helped a bit, good luck, it's a personal decision on if you wish to add a DMARD to your meds. Cheers Runrig 😃

[suzy1959]

I was on Leflunomide for a year and it didn't help at all. I had also been on Methotrexate for over 6 months previously with no benefit either.

Towards the end of being on Leflunomide, my blood pressure shot up. Once off it, my BP is now normal again. My kidneys also showed some issues so I was glad to get off it in the end. I have now concluded that, as Celtic says, I probably just need to reduce the Pred. much more slowly instead of trying all these DMARDs which don't seem to work . It seems to be a case of trial and error rather than there being any evidence for them with PMR. I hope it works for you.

[trish29 in reply to suzy1959]

Hi Suzy !! Your reply to Howard 523 's post on leflunomide is very interesting and Methotrexate .. I took leflunomide for a while last year and it made me very ill nauseous wise and I was really away with the fairies ..and Methotrexate 2nd time around doesn't seem to be doing any better ..I have just had 2 awful days after having my 12.05 mg injection on Sunday teatime. I can't stand the metal taste all the time ..it makes me depressed and when I am low I am saying to myself " Do I really need to be pumping my body with these Chemicals ? " it knocks me out for those 2 days and I feel better this morning . it has brought back the migraines .BUT if I don't have it then I am letting down my Rheumy , Partner and Family .. Since I have been back on the Methotrexate like you my B/pressure seems to go up and I have painful legs as well .. I have to have Blood tests tomorrow and B/P check .. The 1st time around it affected my liver so I hope the Blood tests come back OK .. I have more exhaustion now as well so Celtic and everyone else is right in saying go slower at the steroid reduction .The trouble is on these Dmards there doesn't seem to be any without side-effects and there needs to be some quality of life ..take care trish 29

[suzy1959]

It sounds as if you are really suffering with the MTX, trish29. I'm not quite clear why you will be letting down your family if you don't take it? ( I wouldn't care if you let down a Rheumy!)

The worst thing I had with MTX was the hair loss, and, of course, the fact that it didn't work!!

Where are you on the Pred.? I am currently between 11mgs. and 10 mgs.- so far, so good, but it is beyond this level when I usually have the problems, so we'll see!

[trish29 in reply to suzy1959]

Hello again suzy1959, you are right about the Methotrexate , I have had another awful day in tears for most of it because I just feel that I try anything I am given but everything drugs you up . I have also just read your post on O/A in your knee and as you say its one hurdle after the other. I am becoming more tied to the house and would love to get up and go out and lead a more normal life but the pain level is unbearable and like you I have co-codomol .. As for my Rheumatologist he is the only one who has been patient and sympathetic to me on my long PMR journey due to previous neglect at another hospital. When I say letting down my family I just want them to see that I will try anything for a good while to try and get down on the pred and not be a wimp after all it is me that is suffering , at the moment I am on 2days at 14mgand 1 day at 13.05mg hoping to be at 13mg by the time I see my consultant on May 22nd, depending on tomorrows blood tests and I will tell the nurse how I am feeling. My GP hasn't got much patience for PMR. I think I need to slow down a bit on the reduction as I don't think both medications blend together very well .. I will just have to keep fighting on and best wishes to you Suzy .. trish29

[PMRpro Ambassador]

It's all very well them trying out these other medications - to date there are only small pilot studies and I'm beginning to thing the results were wishful thinking. The original leflunomide pilot study claimed that 22 of 23 patients went into remission. I have yet to "meet" anyone it has worked for for any length of time without severe side effects - and some of its side effects make pred look a beginner!

Like Suzy - I don't see why forcing yourself to take a drug that makes you feel even worse is better than "letting people down". The rheumy is probably experimenting. Call me cynical if you like.

[trish29 in reply to PMRpro]

Thank you PMRpro my rheumatologist knows that I have been on Methotrexate before and was hoping that after a long break off of it that it might just get me to the 10mg mark and stay there for a while ..I said I would be happy to try to get to 12 mg and stay there.The problem is PMR and my body makes its own mind up .. I would be unhappy if he gave up on me as I have to keep hoping and believing that something someday will help me get better. Its comforting to know that there is so much support on this Forum .. Once again thank you trish29

[suzy1959]

Thank you for your Support, Trish.

Just a thought, and may not be relevant for you, but, given your pain it might be worth consideration: When I first saw the Prof.( Oct. 2013) when he didn't think I had PMR, he put me on Amitriptyline ( 25-35 mgs.), saying that it would help me with my sleep and may also help with the pain.He also mentioned I might have Fibromyalgia. At that time I was on 13.5 mgs. Pred. and still in a lot of pain. It certainly did help with the sleeping, giving me a deeper sleep than I had had for a year or so. I also started to feel better but put that down to reducing the Pred. I did not realise quite how much it was helping with the pain until a couple of months ago when I weaned myself off it as I hate the side-effects. After a couple of weeks I started to have massive pain , fatigue, tearfulness etc. just like a severe PMR flare. I knew it couldn't be the PMR and eventually realised it must be the Amitriptyline. As soon as I went back on it, the pain subsided and I am currently hardly having any PMR pain- the OA knee has taken over instead!

I got a bit depressed thinking that I must have Fibro. as well, but now I am wondering what it all means- does Amitriptyline help with PMR pain? I really think it might , and it might be worth asking your Rheumy about it?

I would be interested to hear from anyone else who has taken Ami. -good or bad?

[trish29]

Hello ageain suzy1959 .. Thank you for your reply and concern ..I have been on everything the Rheumys have given me Amitriptyline included. Azathiaprine as well , you name it I've been on it .. The trouble with me Suzy is I have a very sensitive stomach and believe it or not the Methotrexate doesn't give me a bad stomach ..I am trying my best to tolerate it but my pain level seems to be worse on the Methotrexate including my hands which is hard as I like to knit and crochet to keep my mind occupied . I am one of those difficult people that can't take the strong medications .. Oh well I will see what the nurse suggests tomorrow and maybe I can get an appointment with one of the other GPs but they can't do much until I get the blood test results .. I feel for you with your O/A knee as I am suffering enough..My PMR pain is just bearable but it reminds me at certain times ..morning and late evening .. All the Best. trish29

[Green_girl]

I was put on the DMARD Methotrexate because of an increase in osteoporosis discovered at second DEXA scan - and so I had to try to reduce Pred jabs quickly as they were seen to be the culprit. This was the only reason given for being put on a DMARD. It did help a bit (but not with pain, only gave movement if I pushed through the pain). I'm not sure that I reduced the jabs quicker because of being on it, as I was doing quite well.....no way of telling unless I had a time machine and could go back and try without the DMARD!

No signs of a real time machine being available yet -anyone?

DMARD had awful side effects - which were much reduced by taking folate instead of folic acid (apparently some people cannot assimilate folic acid supplements, whereas they can assimilate folate, as it is closer to the folic acid in food you eat), and upping foods containing folic acid. I changed my diet on the day of taking Meths to avoid FA foods, plus the supplement (what a boring day it was ...) and then ramped up intake on other days. This worked a treat as the only side effect left was shaky hands. AS has been said, these drugs can have quite strong side effects, which can almost rival those of Pred!

I too, have heard different views from the 'experts' as to whether DMARDS help or not. The jury certainly seems to still be out. The only constant I've heard is that they don't work for GCA.....but not having had that (so thankful), I can't comment further.

Decisions, decisions.....

Good Luck!

[Vpankhurst]

I have taken methotrexate no effect then lefluimide terrible side effects now just stopped azaithprine liver problems so I am just going to go very slowly reducing the Pred have had GCA for nearly 3 years once I get to 10 mg seem to flare but the side effects of the others make me feel so much worse. Never mind onwards and upwards.

they supposed to suppress the immune system to allow preds to be lowered but my system doesn't like them.