stopping biologic rather than Dmard

[smilelines]

I was on leflunimide and my rheumatologist said I also needed a biologic as I had too many swollen joints. She added a biologic and I have no swollen joints now. I am having some problems with needing to rush to the toilet and this has always been the case since I have been on leflunimide. I think this is a bit worse since being on the biologic. So my rheumatologist says I should come off the biologic so we can see what happens. Anyone know why she would take be off the biologic rather than the demard? This makes no sense to me in that we know the demard was not working well enough. Anyhow, I said I would put up with the side effect so I am still on both. Decreasing the demard was not an option. My only option was to drop the biologic (cosentyx). I never seem to have my wits about me enough in an appointment to ask the needed questions.

[Runrig01]

Sorry, you are struggling. I don’t agree that stopping the biologic is your only option. Working with your rheumatologist should be a partnership and not a dictatorship. It is perfectly reasonable to say you’d rather hold off your dmard and see if things improve, and if not then you’d consider stopping the biologic. You have a better grip on what’s causing the issues. You could even hold off your dmard for a few weeks, and if things change for the better let her know. I had to hold off my dmard for 2 weeks after my covid vaccine, perhaps that’s an opportunity.

[bpeal1 in reply to Runrig01]

Unfortunately the half-life of leflunomide is very long, so that stopping it for 2 weeks probably wouldn’t be long enough to see any difference. If leflunomide is causing serious side effects they have to use a wash out drug to get it out of your system. This is also the reason they don’t suggest stopping leflunomide for vaccinations or most surgery.

[Hisue in reply to Runrig01]

Here in the USA I have experienced the “medical dictatorship”.

(& friends have been “fired” as patients for politely questioning drs’ recommendations.)

[Jackie1947]

I've just been tested for Microscopic Colitis associated with autoimmune conditions in my case RA. I hope you get the right balance. All this started before I had Benipali but after I took Naproxen now very much stopped. Good thing is Benipal or Etanacrpt has put my RA into remission.

[MayDaisy]

Hello. I think you need to chat this through with your consultant too.

I was put on leflunomide before being put on biologic. I lasted a few weeks on the leflunomide. I was constantly dashing to the loo and lost 5lb in weight in one week. My GP told me to stop it and go back to rheumatologist. It was actually my rheumatology nurse who assessed me for biologics, as most people say, they were a game changer.

[Marionfromhappydays]

A known and quite common ( I think) side effect of cosentyx is diarrhoea so that's probably why your Dr has suggested this.

My friend takes cosentyx and after injection she's always running to the bathroom, next day it calms down. I guess it depends how bad it is. If lef made your tummy poorly I probably would have asked to stop that.

All about working together with your Dr not them just barking out orders .

[Ruffles13]

I had to come off Biologics when I had a bladder cancer operation. After about 2 months I really started suffering with my RA a bad flare up. Now I can’t keep the pain under control. Any help out there.

[Djlr]

My Daughter’s “NEW RHEUMATOLOGIST” said the same thing to her about her biologic she was on for her autoimmune disease.

He said, why don’t you come off, and maybe it’s not helping you. She made the decision to stay on it, which was a good decision – because, when Insurance got switched, and she was off of it for two months as she was WAITING for her NEW insurance approval to go through - her AUTOIMMUNE SYMPTOMS starting going OFF THE CHART.

If someone is doing well on a particular autoimmune biological medicine, why switch?

Only if symptoms of another nature are developing, or your symptoms are getting worse, should you even consider switching or coming off and trying something different.

Stick up for yourself, if things are going, well, don’t make changes. 💜