Quick question. Been to my lovely rheumy today. She has suggested I try Leflunomide (DMARD). I would be interested to hear your comments about any experiences you have had with this treatment. Sadly, I don't respond very well to many drugs and have tried both MTX injections and Hydroxychloroquine, but had to come off them with unpleasant side effects, so I'm nervous about this too, but 6 years plus into PMR/GCA with constant flares and raised CRP it's a struggle and my cumulative pred effects are taking its toll, so I've got to do something. Thanks for your time reading this.
Leflunomide DMARD drug: Quick question. Been to my... - PMRGCAuk
I completely understand your concern. After failures with other drugs, methotrexate & azathriprine, I was put on 20mg of leflunomide and all was well for a few weeks and then I started getting stomach pains during the night. After a a little while these became severe stomach pains during the day. These stomach pains were so severe I could only get comfort by lying down and keeping totally still whilst concentrating on keeping the pain down. Needless to say I stopped taking them. On the advise of my rheumies I started again but on 10mg only and this seems to be working ok.
You can only try but bread the side effects and note that it can take 6 weeks for leflunomide to take effect. Good luck and I hope you get some relieve.
Have you tried Bowen therapy? I had one session last week and have definitely felt better. I have also been trying a new diet so not sure how much impact that has had.
Thank you Brian. Yes, I've got a friend who is a Bowen therapist, so I have, sadly for me, it didn't work, although a lovely and painless treatment.
I understand it may take time for the drug to work. Had the same with Hydroxychloroquine, which was doing the trick, but sadly after 7 months I had severe side effects and had to come off.
I'm worried about my stomach which is'nt the best at the moment, but I may or may not start the leflunomide (my rheumy is starting me on 10mg only).
All the best Yvonne
I was on Leflunamide for about 8 months- no serious side-effects, but I had a very bad flare which meant it wasn't working and then my blood pressure lept up, so I had to stop taking it. Blood pressure then came down quite quickly with medication and then I could come off that quite soon too.Sometimes it is worth trying these things just in case they work, but keep a very close eye on it at all times.
Thanks suzy1959. If I decide to go ahead with this my rheumatology department will keep a close eye on me with visits to nurse/regular blood tests etc. Interesting about your raised BP, I too have raised BP, which I medicate for (another side effect of pred) so I'm a tad concerned about that as well, but like you say maybe I just have to try this to see if it does the trick. I hope so. I will keep a close eye on it if I do. Thanks again.
A pilot study was done with leflunomide which looked promising and it was published in 2014. I can't get at the full text but as I remember, 21 out of 23 patients went into remission when given leflunomide, 1 was lost to follow-up and one didn't respond as well.
However - despite this, and the authors of this study being amongst the committee, it isn't included in the 2015 recommendations for the management of PMR
I do know one person who was put on it - because of the side effects of pred - but had to be taken off again because the leflunomide side-effect that popped up was even worse.
Something that doesn't seem to be discussed or considered is that different people can respond differently to different forms of corticosteroid. I was OK on prednisolone for a couple of years, using both plain white and enteric coated formulations. Suddenly a new batch (loose, not in a blister pack) of the 5mg enteric coated version didn't work and I started to flare. I was OK on a batch of 2.5mg enteric coated. By then I had moved here to Italy where they don't use prednisolone soI was switched to methyl prednisolone - which was an utter disaster. Even on 20mg taken at night I couldn't move without pain until mid-afternoon. The side-effects were awful: massive weight gain, totally Cushingoid moonface and buffalo hump, a beautiful black beard. After 9 months I was switched to prednisone in the form of Lodotra, 15mg gave me the immediate miracle response and I reduced steadily to 5mg where I stayed for probably nearly 2 years. I've recently had a flare and was back to 15mg - not an ounce in weight gain over 3 months and no other visible side effects.
I have to say - since you have a lovely rheumy - given this year's guidelines, I'd be asking questions wanting some more justification on trying another DMARD that isn't included in them - Recommendation 7.
After well over 6 years of pred during my 12+ years of PMR - and I have had flares in that time too - I would be very unwilling to add to my pred without good evidence it was going to help. I was well on 5mg for so long - but I had reduced using the "Dead slow" approach to get there. Other than this most recent flare the problems were either due to trying to reduce too far or too fast and what was obviously a total lack of response to methyl prednisolone.
You say you keep flaring - might that be due to trying to push reductions? And what side effects are the problem? If it is weight gain, I lost 38lbs by cutting carbs drastically as have others who have either lost weight or avoided gaining it in the first place.
Thanks so much for your comprehensive reply. I will check out the links. I assure you I am not trying to reduce quickly, always slow, slow, but never been below 8mg since the onset of my illnesses. I have regular blood tests obviously and for reasons no one understands my CRP and sometimes ESR as well creep up - and I always know when they do as I feel more unwell. The PMR isn't such a problem it's the GCA that is bothersome with headaches (always in the same place). I discussed the dead slow with my rheumy but as you know no point in doing that until you get down to about 10mg. What I didn't know though is that there is a tablet cutter, so when I do get down do that dose I will get one.
Side effects are massive weight gain; I also have a back problem (spondylisthesis after a fall in the bath last year) which doesn't help matters. Having special back physio presently re that, sadly so far no improvement.
I also get extremely fatigued, have raised BP and type II diabetes because of pred. Diabetes controlled with diet. When I saw GP back in January I queried taking the fat burning drug. She says I can. Also recommended Weighwatchers, which I'm not sure is the route I want to go down (finances difficult as well), but now we are getting to warmer days I may start doing a no carb diet (or low carb), got to do something about this huge tummy of mine. I was also interested in what you said about the camel hump, been wondering why I have this ( ruddy steroids!!). Anyway, enough moaning.
My rheumy is referring and investigating my stomach problems (nausea etc) so awaiting those.
I read with interest about other types of steroids. Wish I'd known this yesterday when I saw rheumy.
Obviously I don't have to start this, hence my questions to the forum, and my rheumy is very understanding and supportive. She knows my illnesses are "agressive" as she calls them.
I'm presently back on 15mg for two weeks, then reducing 1mg fortnightly and see what happens. In the meantime I have decisions to make and also await nurse appointment at rheumatology for advice about Leflunomide.
"as you know no point in doing that until you get down to about 10mg" - well, no actually!
Sometime ago we realised there were people who struggled at above 20mg to reduce the way their doctors wanted so we suggested 1mg at a time - and they were able to reduce to lower than before. The "Dead slow" approach is a further refinement of that combined with the version Ragnar the Swede had developed for himself to get down below 5mg.
Some people appear to be very sensitive to dose change - at any level. This is made worse when trying to force a reduction results in a flare and a need to go higher again to control the symptoms. The worst situation you can get into is yoyo-ing the dose - in some people it appears to desensitise their response to pred in some way, no idea what the mechanism might be but that is the effect. Top US experts warned against it years ago, together with never reducing by more than 10% of the current dose.
I'm not so sure about WW - it very much depends on the leader. Many are totally uninformed about the effect of pred and uninterested in "an excuse". Strict management of carbs leaves the cost of the classes to be spent on good food and you might find a blog called the Diabetic Mediterranean diet by Dr Steve Parker of interest. He, like Gary Taubes, is a strong proponent of the concept that not all calories are equal and that fat doesn't make us fat. It wasn't until I cut my carbs - after a few months with the hospital dietician - that I started to lose weight on the Lodotra. Though I had already started to lose the tummy fat - the black trousers I was thinking of wearing for my daughter's wedding fell down on that morning!
But being on 8mg after 6 years - particularly when you have had flares and been messed about with is not SO unusual I suspect. It is said in the literature that 25% need a couple of years - and remain at a higher risk of relapse - and another 50% up to 4 to 6 years to stop taking pred. The rest of us need it longer. There is a difference between flaring because the dose became too low and flaring because the activity of the disease increases. But it is subtle - if you aren't thinking about it.
Hi - I was put on Leflunomide last year, starting at 10mg. All was ok after about 6 weeks, do the dose was upped to 20, when everything went wrong - really bad side effects. I went back to 10 and my rheumy agreed I should stay at that. I think it must be helping my steroid reduction as I've dropped from 10 to 8 using the slow method with no flares. So good luck!
I've been on lef for nearly 2 years now starting at 10 mg and moving onto 20 mg. 10 didn't do much but I'm OK most of the time on 20mg. God orbid you forget to take your tablets though.
I was on meth for a year but felt really ill with shivers and shakes for 2 days after taking the tablets, and sick. I've fingers crossed for you that if you choose lef, it will help you too. It has a couple of side effects (toilet wise) which I'm prepared to put up with to help with the slow, slow reduction method of pred. I hope it goes well for you whatever you decide to do.
I had similar experience with MtX injections, but I never new when it was going to hit me so couldn't plan my life at all, hence stopped.
Wondering what you mean when you say God forbid if you forget to take it, what happens?
When you talk about your side effects, does this mean you are housebound when it happens and how long does it go on for.
Thanks again for your reply.
I have been on Hydroxychloroquine for almost two years and I don't believe it is helping to spare the pred. dose since I have had trouble getting below 3mgs. and feel better on 5mgs. My rheumy insists it is helping and directs me to continue on it. I am on my 4th. year of PMR and taking pred. I am wondering what your experience was and what the unpleasant side effects were. Thank you and best wishes to you.
I started Hydroxycholoroquine last year in February. Can't remember what pred dose I was on, but it was faily high. It certainly seemed to keep the dose in check and I managed to reduce without flares. My side effect was rather unpleasant and one of the rare ones. In August (prior to that no side effects) I started having bizarre and dangerous thoughts and I mean bizarre; very scary and most unlike my. I got worse and worse and I then decided without any consultation to stop taking the drug. Within 48hrs I was feeling back to my normal self. If you tolerate Hydroxychloroquine so well and you are down to 3mg that's brilliant. Even being on 5mg is not a major concern. If I were you I wouldn't worry. Many folk live with that dose forever without any problems. Wish it was me.
Sadly my experiences with PMR/GCA is now too long - diagnosed 2010 and too many steroids (cumulative) hence my query to the forum re Lef.
Thanks for your response and all the best.
Thank you for your answer to my question. That is an interesting and disturbing side effect, you were wise to suspect the drug and discontinue it. I have not had anything such as this happen, I just like to stay informed about what the Drs. prescribe. Thank you for your good wishes and my best to you.