Steroid sparer

[Maryis80]

What is meant by "steroid sparer"? My rheumy wants me to stay on Leflunomide, and in fact put the dose up recently when my CPR went up. When I ask him what it is meant to do he just says its a steroid sparer. I have recently developed very painful and stiff fingers which I fear may be peripheral neuropathy which can be caused by Leflunomide. The other downside, is that I am not meant to drink alcohol, though I do sparingly, and when I have blood tests, he says that my liver and kidneys are ok. Am seeing him this week and will see if he will let me stop taking Leflunomide, once I really know what it is meant to prevent. Any suggestions?

[DorsetLady PMRGCAuk volunteer]

A “steroid sparer” sometimes used to help PMR/ GCA patients to reduce their dose of steroids more quickly….it doesn't necessary help the illnesses.

Lots of doctors just don’t like patients being on steroids, but they seem quite happy to add in another drug, which sometimes helps, sometimes doesn’t.

Leflunomide or methotrexate are used for other illnesses in their own right, but they obviously do come with their own set of side effects.

[piglette]

You may have a fight to get off Leflunomide. As Dorset Lady says some doctors seem pretty keen on so called steroid sparers, as they seem to be hell bent for us to get off steroids as quickly as possible.

[jinasc in reply to piglette]

No fight, just say, 'I have listened to you and have decided that I will stick with pred. By adding a steroid sparer agent who comes with their own side effects. You are adding additional ones to the known 83 pred side effects. I feel my body has enough to cope with, thank you but no thanks".

Remember it is your decision after looking and listening - your body, your decision always.

[piglette in reply to jinasc]

You haven’t met my GP who wants me on bisphosphonates. I have been fighting him since 2016. Each time I think it is all over and last week he brought up the subject yet again.

[Nightingales in reply to piglette]

Oh Piglette, I know just what you mean. I had a severe skin reaction to Alendronic Acid yet still he spends most of the visit trying to get me to take different pills or infusions. He gives me a booklet each time even when I say I have one. He is obsessed!! My Dexa scan is normal although I do have some wedging in my spine.

[piglette in reply to Nightingales]

I suppose we will just have to put up with them!!

[jinasc in reply to piglette]

Ask him to make a ⏺ 😉😉

[PMRpro Ambassador]

The theory is that the so-called "steroid-sparer" potentiates the effect of a given dose of pred so you get more bang for your buck and that, in turn, may mean you get to a lower dose of pred. But it is at the expense of another generally powerful drug with its own set of adverse effects - and in some cases that can be worse than pred alone.

I have had very few problems with years of pred at above 10mg. I eventually agreed to try methotrexate in an attempt to get lower. I had none of the usual expected adverse effects of MTX - but within a week I developed a load of what are usually called pred adverse effects: constant hunger and weight gain amongst them. I ached all over, as bad as I did with unmanaged PMR and then the fatigue started. By week 4 I had half a reasonable day a week, the afternoon of the day the next MTX dose was due! An increase in pred effects is actually mentioned as a problem with steroid sparers,

I stopped - I'd discussed it in advance because we were off to S Korea to a science meeting. Within a week I started to feel better so by the time I saw the rheumy it was to say - sorry, but no thanks! I'd gained over1kg in a month - and it took a LONG time to lose it. I'm debating trying leflunomide but I have to be able to function as a sole carer - can't risk the usual adverse effects - though I noted yesterday they kindly say the diarrhoea clears up after a bout 6 months!!! Gosh - isn't that comforting. NOT!!

Peripheral neuropathy isn't uncommon with leflunomide - and it quite scares me too!

[ignatz in reply to PMRpro]

Yikes! Just read about ......Peripheral neuropathy, a result of damage to the nerves located outside of the brain and spinal cord (peripheral nerves), often causes weakness, numbness and pain, usually in the hands and feet. It can also affect other areas and body functions including digestion, urination and circulation.Worth avoiding!

How common?

"During the study period, eight incident cases of peripheral neuropathy and two cases of worsening of preexisting neuropathy were reported (incidence: 9.8%)". pubmed.ncbi.nlm.nih.gov/168...

[PMRpro Ambassador in reply to ignatz]

Too common if you are the one in ten - have a PMR friend who developed peripheral neuropathy and stopped leflunomide for a time. She restarted at a lower dose and it seemed to be better.