Leflumanide

[Caloo650]

I'm now into week of 7 of 10mg daily of Leflunomide and have decided after daily diarrhoea and increased blood pressure to give it a miss as a sparing agent and battle on myself.I'm almost down to 4.5 Pred and I know it will be a struggle but even though they are the only side affects I worry about high blood pressure and the risk of stroke or aneurysm with GCA. Is this realistic?

[SheffieldJane]

At least you tried it. 4.5 is a pretty reasonable dose to have reached. A really small, well spaced taper is indicated now to support the recovery of your Adrenal system.

[Caloo650 in reply to SheffieldJane]

Yes I can do without the diarrhoea as well.Thanks for your reply.

[DorsetLady PMRGCAuk volunteer]

At 4.5mg I doubt there is much risk of high blood pressure -that usually comes with higher doses -even if you had it then (did you?) it would have returned to more normal levels by now.

As for risk of stroke or aneurysm-that is more likely within first 6months of GCA -so as you are over 2years in and GCA presumably reasonably controlled to enable you to get to 4.5mg doubt they are a factor either.

As for Leflunomide, not worth the hassle.

Not quite sure why you are being pushed to try both MTX and Leflunomide -to be at 4.5mg without too much trouble at only 2 years in, I personally would prefer a slightly higher dose of Pred rather than another drug with added side effects.

Took me over 4 years to get to zero with my GCA -and that’s not unusual…

[Caloo650 in reply to DorsetLady]

Thank you that's good news re 6months in for stroke and aneurysm. The BP was definitely from Arava the Leflunomide according to rheumie who would like to now put me on BP medication but even though I'd like to taper faster, not on.

[DorsetLady PMRGCAuk volunteer in reply to Caloo650]

If you are stopping Leflunomide then suggest you get BP checked in a few weeks when it should be out of system -then you’ll know if BP meds required.

..and there really is no rush to get off the Pred, you are on a very low dose in comparison to what you were before.

[PMRpro Ambassador in reply to DorsetLady]

Leflunomide takes a LONG time to get out of the system - in healthy adults it is about 3 months (why would healthy adults be taking it????) but the manufacturers say it can be up to 2 years in some people! There is medication to wash it out should it be required though.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Thanks for that -back to drawing board for BP check then …and maybe another reason not to take it.

[PMRpro Ambassador in reply to DorsetLady]

If your effects are really bad they do have this wash-out stuff.

[Caloo650 in reply to DorsetLady]

Thanks I check BP daily ATM. The rush is as usual from rheumy as I have osteoporosis. However it has improved with 6 monthly prolia injections

[jinasc]

Please fill in the Yellow Card Scheme - this will add to the knowledge of side effects of the drug you are having trouble with - even if those side effects are already listed.

yellowcard.mhra.gov.uk/

[Caloo650 in reply to jinasc]

Ok shall do

[PMRpro Ambassador]

"I worry about high blood pressure and the risk of stroke or aneurysm with GCA"

Why? Do you means in the context of stopping leflunomide? The increased risk of stroke with GCA is in the first year after diagnosis - once it is well managed it falls again. The aneurysm aspect is a different thing I think and is there long term anyway.

[Caloo650 in reply to PMRpro]

Thanks. I feel better informed now to face rheumie.

[Jackoh]

Really can’t understand why they put you on it in the first place. At your dose after such a short period of time I would imagine you’d be fine following a slow taper. 💐

[Caloo650 in reply to Jackoh]

I certainly plan to try. When I got to 4.5 before I had a flare. However this time so far so good 🤞

[Maryis80]

I have been on leflumonide for several years currently 10mg per day and am at 2mg Pred. My consultants is adamant that I stay on it until I am off Pred! He has also just put me on quinine tablets, not quite sure what for. I did ask if I could have the gin to go with it! Dont seem to have had any side effects from either, my bowels are always a bit loose, but I put this down to having diverticulosis.

[Caloo650 in reply to Maryis80]

Thanks Mary. I'm going to do a wait and see. I can always start it again

[Dizzart]

Hi Caloo, I don’t know if this is any help but Loperamide works wonders for a bad gut but is very fast where Bisodol is also excellent for IBS and loose bowels and not so strong, both can be bought over the counter. I use either. Hope you feel better soon

[Caloo650 in reply to Dizzart]

Thanks for your info. I'll investigate here in Australia