Leflunomide for PMR

[valrene]

After reducing from 20mg to 5mg of steroids over the last 8mths, told the Rheumy that I had struggled enough and couldn't stand the pain and stiffness any longer, he said he was happy for me to stay on 5mg for now and put me on Leflunomide 2weeks ago taking 10mg for the first month then 20mgs after that if liver blood tests are ok, as methertrexate pushed my liver enzymes up, my esp and CRP are quit high still, has anybody else used Leflunomide drug for PMR and if so did it reduce inflammation, thank you for any replies, Val.

[piglette]

Hi Val, reducing from 20mg to 5mg in eight months is incredibly fast. Are you saying you are in a lot of pain? The whole aim of the pred is to make you feel comfortable, not to make you suffer. I assume you are being given Leflunomide because your rheumy is trying to get you off pred as quickly as possible or is it for something else? It is suggested that it is a good idea to stay on 5mg pred for a few months so that your adrenal glands can get going again. 5mg is a very small dose so it should not have too many adverse side effects, if any.

[valrene in reply to piglette]

Thank you for your reply, have had lots of issues with my Rheumy along the way, my GP wanted to up my steroids at 7mg because of the amount of stiffness and pain I was in, Rheumy wrote to my GP to say that on no account was he to increase them, waited 18mths for diagnoses of vasculitis and PMR from him, saw a different Rheumy last August he diagnosed me with PMR straight away put me on 20mg steroids pain gone within 3days, 2mths later saw my Rheumy he said I had to come of off them as no I didn't have vasculitis even though he thought I had mpa to start with, and no I didn't have PMR either, think he got the sulks because the other Rheumy said I did have, have been given other Rheumys names on this site but I thought would give it a bit longer to see what he suggests, as with steroids wanted to get off of them, he did say that if I did have vasculitis and PMR I am on the right treatment any way, thought I would give Leflunomide a chance to get my inflammation down just wanted to know if it does work.Val

[piglette in reply to valrene]

I think a lot of rheumies come from another planet. They seem to think we all want to live on vast amounts of pred for fun. It will be interesting to see if the Leflunomide helps you reducing your pred dose, I think the jury is still out, but it may work for you.

[valrene in reply to piglette]

Thank you piglette I haven't much faith in him, I asked him if reducing pred will bring more symptoms out, he more or less said he was surprised that I got down as low as 5grms before I couldn't cope, told him I couldn't cope at 7mg, but didn't tell me to increase, sometimes I wish he would have all the symptons just for a day so that he could suffer like we all do and know how hard it is, I really thought I was there now I'm on Leflunomide for the inflammation but we shall see maybe it will work, Val

[piglette in reply to valrene]

That is awful of your rheumy, he is effectively saying he knew you would have problems. My rheumy said that I can expect to have a few flares, I assume he has no idea how awful a flare is. As you say if they could have PMR just for a day!!

[polkadotcom]

Why have you continued to reduce if you are in such pain? The whole idea of taking the steroids is to manage the inflammation so that you had some quality of life along the road.

Leflunomide is widely used for other arthritic conditions where the pain is concentrated in the joints, but PMR pain is muscular pain, so not quite sure where your Rheumy is coming from on this. A more realistic steroid dose should give you 70% pain relief at the least and this is what I would go for, not DMARDS which, in the main, just don't work for PMR. If your inflammation markers are still high, then you are just not on the right dose of Pred.

Perhaps you could have another chat with your Rheumy, or the Rheumy nurse if you have one.

[valrene in reply to polkadotcom]

Hi Polkadotcom, he is a nightmare my Rheumy I know I have been given names of other Rheumys on here but keep thinking this time he will give me some answers but never does, he is totally convinced I don't have PMR even though last August a older Rheumy diagnosed me with PMR and put me on 20mg steroids pain was gone in 3days, when mine came back off holiday he said we will reduce the steroids by 5mg each month, coped with the first month a few days into the second month when I had dropped another 5mg I phoned my Rheumy nurse to say I couldn't move I was so stiff and in so much pain, went to see Rheumy a few days later and put back up to 15mg, have been reducing got to 7mg all the pain and stiffness came back my knees were really bad, my GP had an X-ray done on my knees and said there is no sign of oesteoartheritis which my Rheumy said I had, went to see him told him what my GP had said about no oesteoarthritis he didn't believe me he looked at X-ray got me on the bed and used a small screen he did a scan, I asked him if there was any osteoartheritis there he looked at me and didn't say anything, he just said its looking more like PMR, so he would start me on this Leflunomide I thought that was for PMR but it's looking more like from what you say he still doesn't believe it's PMR but it's more artheritic, I am getting cross with him because i have been in so much discomfort waiting for him to make his mind up what he thinks I have. Val

[PMRpro Ambassador in reply to valrene]

If your rheumy doesn't listen to start with he is unlikely to change. I wouldn't stick with anyone as unhelpful as that.

Leflunomide was used as a steroid sparer in a small pilot study and it did look good at the time - but I have come across very few people on the forums for whom it has worked longer term and no larger study has been done to follow up the results. Not least I think I should say because the potential side effects are pretty major! I fail to understand why a low-ish dose of pred that works on its own is so terrifying to so many rheumies and they would rather add in another powerful drug that isn't proven to work!

What many forget, it seems, is that the bio-availability of pred (the amount your body absorbs of the dose you take) varies between 50 and 90%. That means that if I am a 50%-er and take 10mg it is effectively far less than someone who is a 90%-er taking the same dose. (Does that make sense?)

[suzy1959]

Methotrexate and Leflunomide are first and second choice DMARDS used to help people with PMR to reduce their steroids. That said, as the others have said, you just aren't on enough Pred. at the moment and that means I think that no DMARD is gong to work that well for you. I have tried both Methotrexate and Leflunomide and neither did a thing for me- there doesn't seem to be enough evidence of their efficacy, but Rheumys still try them just in case I think. Leflunomide eventually gave me really high blood pressure and I had a flare, so was no use t me at all.

It sounds like, among other inexcusable things, he doesn't really want you to have the Pred. you really need and that is your major problem. All the evidence points to your needing more than you are on! I have had this problem and I started to feel like a bad patient and that it was all my fault! Thank goodness I now have a Rheumy who accepts that I need what I need even though it is often disheartening to still be on 10 or 9 mgs after nearly 4 years, but that is how it is!

[valrene in reply to suzy1959]

Hi Suzy1959 as I have been reducing pred my inflammation levels have been rising, Rheumy said he can't make out why that is, well I just looked at him and thought I could tell you why is he stupid, I think it's all to do with him thinking that I don't have PMR, I do get a lot of knee, calf, ankle feet pain and swelling besides the usual neck,upper arm,hips and thigh stiffness and pain, my knees were swollen and ankles and tops of feet couldn't get my shoes on, went to GP with it had X-ray of knees no sign of osteoatheritis , but Rheumy still thinks it's a artheritis problem he won't have it , I just feel he doesn't believe me like you I feel it's all in the mind sometimes, mentioned it to my GP she said well of course we believe you all that inflammation wouldn't be there if something wasn't wrong, I have got a small supply of steroids at home wondering if I ought to up them and see what happens , but suppose I had better wait and see if Lepflunomide does work, you have had it for a long time, my mum had it for 10 yrs before she died, sometimes they say it goes in 2yrs Val

[Whittlesey in reply to suzy1959]

Agreed. You need to change your rheumatologist. Have had the same problems w rheumatologists not understanding.

He may not understand the disease and wants to appear as if he does.

Not good for you.

Would change.

[valrene in reply to Whittlesey]

Hi Whittesley I have anca p MPO antibodies, splinter heamoriges on nails rashes on legs and he says no now when I ask if I have vasculitis, and no to PMR just get some weight off and then you won't be so tired, well I went out and cried, I'm beginning to think like you he doesn't know a thing about any of it, it's a year now since other Rheumy diagnosed me, I think mine has got the hump because he didn't diagnose me so really he has put me through a year of hell just so he can prove every one wrong, sorry the more I listen on here I realise how wrong I have been to put up with it.Val

[paddyfields]

Hi Valrene, as the saying goes "There's none so blind as do not want to see".

There are stubborn idiots in every walk of life and you seem to have found one. Do consider a change of rheumy if at all possible. As others will confirm for most it is a long road any way and you might as well be getting the benefit of the only proper treatment for PMR and have quality of life along the way.

best wishes

[valrene in reply to paddyfields]

Thank you paddyfields, it may sound stupid but I'm 67 and was always bought up to respect people and people in authority so have always been pleasant to him even though inside I was reeling, but the last time I saw him I had had enough and was ready to tell him I wanted a second opinion, he must of seen I'd had enough and put me on Leflunomide, but from what all of you kind people have said I think I do need a second opinion, no one my GP and nurse friends has heard of my Rheumy, but the older Rheumy who diagnosed me last August has been at the hospital for 20yrs and they have said he has a good reputation, my GP has said she will refer me to him for a second opinion, I think that's all we aim for is quality of life which I'm not getting with him, see my Rheumy nurse on Thursday will have a talk to her, Thank you Val.

[paddyfields in reply to valrene]

I suspected this was the problem. At 76 I still don't take my own advice. It has taken me six months of crippling pain in my hips from a recurring muscle problem to summon up the chutzpah to ask for an injection and for the last three weeks I am a new woman I put up far too long with symptoms of under-active thyroid and Parkinsons whilst the GP's said not and was told I had arthritis in my hip 8 years ago which I knew was nonsense given the range of pain-free movement I had and which meant I never went back about it and because its so hard to get an appointment anyway you just muddle along. That's why these forums are so brilliant. How did we manage without them

[valrene in reply to paddyfields]

I know that's what I love about the forum feel we are not suffering alone, do feel that Rheumys make you feel that it's all in your head, my friends were coming with me last week to tell him how I am when trying to walk with them, but couldn't face a row so persuaded them not to come, but I'm not taking it anymore from him, will ask for a second opinion soon, keep saying that but never do, he keeps saying the pain in knees is osteoartheritis my GP had an X-ray taken no sign of it, Rheumy still won't believe it, will let you know what happens.Val

[Griggser]

Hi Valrene, I also have been on leflunomide, started at 20mg a day and after a couple months had to stop due to severe stomach pains. My rheumy then suggested I went back on leflunomide but at 10mg a day. He explained that it was a steroid sparing drug to help me reduce. I'm currently on 12mg of prednisolone along with he 10mg of leflunomide and I am in quite a bit of pain / discomfort. I'm not sure if it's a normal level f pain to be expected with PMR or if you should be virtually pain free? I can't do the normal activities I used to but at least I can get out of bed, put my socks on and even some gardening and some walking, which would have impossible without the steroids! . So in answer to your original question I remain unconvinced that leflunomide helps and you need to be on the correct level of steroids which I don't think I am but really do not want to increase! Dilemma dilemma dilemma.

[valrene in reply to Griggser]

Hi Griggser thank you for your reply, must admit only been on Leflunomide 2weeks at 10mg then in 2weeks time going up to 20mg at the moment feel really sick all the time with terrible pains in tummy, like you desperate to get off of steroids with moon face, high blood pressure and 1point off of being diabetic, have burst blood vessel at back of eye which optician said could be diabetis so hence more blood test this week at surgery, they think all started with steroids, so will try anything just to get off of them, but now realise I would rather have a better quality of life on them, I can understand why the old hands on here say it's a long road, let's hope there is an answer soon, Thank you for your reply just nice to know we are not alone on our journey. Val.

[Judigardener]

Hi

I've also been put on Leflunomide - but only been in a month so too soon to tell you. I'm also on 10mg. See Rheumy later this month so will post then. I will be interested in this thread.

[valrene in reply to Judigardener]

Hi Judigardener yes blood test today, Rheumy nurse on Thursday to see results if I can take 20mg, feel sick all the time now with pains in tummy 2weeks to go until I take 20mg will keep up the thread.Val

[Gosingen]

Yes, I've tried Lef, sadly it didn't work for me... unpleasant side effects (too high BP) and told to come off by GP. Sorry to read about your different diagnoses by rheumy's, not exactly what we need as patients. I hope you get sorted.

All the best Yvonne.