An update on Leflunomide

[suzy1959]

I have now been on 20mgs of Leflunomide for over 6 months. This is supposed to be helping me to reduce the Pred. as I can never get past 10mgs without a flare. I had tapered down to 10mgs but was beginning to feel worse from 11mgs down, and then, after I had to travel and stay for 4 days at a family wedding, I felt absolutely awful ( car journey, stress,hard bed etc.). I realised, (because this has happened to me so often) that I might be going into a flare and so upped the dose back to 11mgs. I decided to stay there as I was going to see Prof. Dasgupta in 2 weeks' time. So, after 2 weeks of doing very little and much pain, I saw him yesterday. I was feeling quite despondent as the Leflunomide didn't seem to have worked, although my ESR has been into the average range for the first time since being on Pred. and my CRP is consistently down but not yet normal. Prof. Dasgupta thought it was worth trying a higher dose ( 30mgs) because of the good blood results and the fact that I am overweight which might mean that I need a higher dose that the average person. This is the first time that my weight has been taken into account and may explain why I have had so much trouble reducing the steroids any lower than I have up till now.

Kate Gilbert mentions bodyweight for dosage in her book, and I just wanted to re-iterate the message- If you are significantly overweight, get the doctors to take this into account when working out the level of drug that you need.

I am hopeful, yet again, that this increase will do the trick and I will be able to reduce the Pred. further within a month or so. I will keep you posted.

[Celtic PMRGCAuk volunteer]

Suzy, I have heard the Prof mention in the past that weight may need to be taken into account when first diagnosed and commencing treatment, adding that whereas 15mg of Prednisolone is generally the recommended starting dose for a diagnosis of PMR, if someone is overweight, a 20mg starting dose should be considered. I haven't got any personal experience with Leflunomide but it's interesting to hear that weight may be taken into account when prescribing Leflunomide as well.

I hope you will soon feel better on the increased Leflunomide dose - meanwhile I hope there aren't any more long car journeys, stress and hard beds on the horizon!!

[Polywotsit PMRGCAuk team member]

Thanks Suzy for the update, and good luck! I believe it was the continental Europeans who first started taking body weight seriously and their thinking is now more widespread, thanks to the high level of international cooperation we are now seeing on PMR and GCA.

Best

Kate

[jinasc]

Suzy

I gained 6 stone due to pred, however I never had a problem reducing, perhaps if you try one of the reduction plans (send a pm) worked out by patients for patients you may find one works for you. Once down to 7.5 mg the weight just fell away all 6 stone of it. Been off pred to 2 years now.

[honeyadams]

I will just mention that my experience of reducing, even slowly, is that the first week of even a 1/2 mg reduction was always met with some increase in pain and stiffness. It calmed down the 2nd week, and calmed a little more the 3rd week. Also, I was never pain-free once I dropped below 10 mg of pred. I, too, gained a lot of weight with the pred. My rheumy kept increasing the sulfasalazine that he used to wean me off of pred. He did this methodically to keep reducing my pmr symptoms. Anything like traveling, any spike in physical activity or stress always produced an increase in pain & stiffness. Only once did I up my pred. I began to wait & see if it was going into a flare. Every time it would just be 1-3 days of reaction to my overdoing the activity. Then my body would return to its prior normal. I don't think I am alone in this experience. I felt like I had to choose being at about a level of 3-4 pain and stiffness continually as a trade off for getting off of pred. Although I had to quit the sulfasalazine adter 7 months due to increased side effects, I did get off of pred. I have been off now for 3 months. I took leflunomide for only 2 doses, but was constantly vomiting so am now on methotrexate. I am just giving this info as something to consider.

[suzy1959]

That's right, we need to remember that our experiences are all different- that's what is so difficult about it!

Sambucca, I have tried lots of ways to reduce and found that any kind of alternating dose does not seem to suit me. In fact, I did best when reducing faster last winter. At half a mg. per week, I got down to 8.5 and felt the best I have felt. Then I realised symptoms were coming back and slowed right down. So when I had a massive flare in February, I had stayed on the same dose for more than a month and it was going to London for a conference that hit me for six. That told me that my PMR was still very active and I had gone below the right dose for me then. I keep trying to get back to that place of no pain, but it is really elusive and, at least now, there is some hope that an increase in Leflunomide might work- nothing else is.

When I talk about being overweight, it is not just the weight I have put on with Pred. but actually being overweight before getting PMR- I don't know whether there is any difference. That three weeks last winter was the only time since I started on this horrible journey 2.5 years ago that I haven't been in pain.