Further to leflunomide and anti inflammatory diet question

[Caloo650]

An update on my short dabble with leflunomide.

On advice from rheumie following my non compliance with methotrexate and my 'too slow' taper with prednisone, I started taking 10mg leflunomide. This was 7 weeks ago and the result? I have given up following high blood pressure and daily diarrhoea. I believed the diarrhoea would improve but still hasn't despite being off the drug now for 2 weeks.

Doing a slow taper to 4.5mg. Has anyone found following an anti inflammatory diet helpful tapering? If so any recommendations as I find some contradictory?

[PMRpro Ambassador]

Everyone is different and some find a specific food makes things worse while others are fine with it, You have to experiment a bit really - keeping a food and symptoms diary often helps. Cutting carbs is the best basic approach - sugar and simple carbs are pro-inflammatory, especially processed ones, as well as contributing to weight gain and developing steroid-induced diabetes.

The diarrhoea is likely to last a while - it takes at least weeks to get the leflunomide out of the system and in some cases it can be found for up to a year.

Obviously your doctor doesn't really understand the PMR/GCA disease process. To have reached 5mg after barely 2 years is very good - it is a myth that PMR only lasts 2 years and most people I know who had GCA took 4 to 5 years to get off pred. It isn't a case of taking a dose of pred, it stops the disease process and all you have to do is get off it. The underlying autoimmune cause of the disorders continues indefinitely - for some it burns out in a couple of years but that is relatively uncommon - maybe up to a third. One study finds half of PMR patients need pred for more than 6 years, albeit mostly at a low dose. Like yours. Increasing numbers of doctors are admitting they keep patients at a low dose for a long time as it reduces the risk of relapses.

You need what you need to manage the inflammation as long as the underlying disease process is active. They don't try to force RA patients off their DMARD - pred is our DMARD. For a very small proportion of patients MTX or LEF help to get PMR patients off pred. It is fairly well accepted - by a couple of top GCA experts in particular - that MTX does little for GCA but there are still rheumies who are so scared of pred, even at low doses, that they will put their patients through unreasonable (in my opinion) trials of DMARDs that are not that likely to work.

Slow and steady to identify the lowest effective dose works better than adding other "stuff". Unless they can fund tocilizumab - but even that isn't magical and some countries limit the duration of use.

[Caloo650 in reply to PMRpro]

thank you for your reassurance. Ill keep the carbs low but I'm not going to punish myself. I'm not overweight but There is the diabetes risk.