New meds

[Flows]

Hi all, new on here ive had lupus for quite a few years. Affected my liver so placed on mycophenolate. Which is doing its job. Last year placed on Hydroxchloroquine but stopped recently due to affecting pigmentation. Yesterday was given mepacrine but its unlicensed and not used often. Im a bit freak out by this.

Has anyone else had this medication or know anything about it. Any information would be appreciated.

Thank you

[MorIlse]

I take plaquenil and has affected the pigmentation on my neck and my chin but it seem to work with all my other symptoms of my mild lupus . Just take 200 mgs a day so I’ll keep taking it and put up with my dark neck. Always check with your doctor for other drug options.

[Flows in reply to MorIlse]

Hi Morlise. Thank you sharing.

[tiredmum]

I am on 50 mg of Mepacrine 3 times a week, 400mg of hydroxy and 2500mg of MMF. No side effects at all. When I was on 3000mg of MMF I had a very upset stomach so reduced it and the symptoms went away.

[Flows in reply to tiredmum]

Thank you for responding. Thats good to know. The dose ive been is 100mg mapecrine daily for 5 days. Having Lupus is a bit of a mindfield.

[NalaPuppy in reply to tiredmum]

Hi, sorry to jump on but I’ve been on MMF for 9 weeks now, and the last week started getting stomach pains - and then today full upset stomach. Pretty sure it’s not a bug I’ve picked up. I was wondering when your upset stomach started, was it straight away or after you’d been on the drugs for a bit? x

[tiredmum in reply to NalaPuppy]

The upset stomach came on quite quickly if I remember, I increased the dose gradually and only had the runs and nausea when I reached 3000mg, as soon as I reduced it back to 2500 the upset went away x

[RachelD1972]

Hi, I was on Mepacrine last year alongside Abatacept. Unfortunately it did hardly anything. I had a slight upset stomach when I started it but it was manageable. It is a pain as GP would not prescribe so constantly chasing hospital for repeat. Now on Mycophenolate and due to double the dosage next month from 1000mg per day to 2000mg. I do find if the dose is increased very slowly I cope with side effects better x

[Flows in reply to RachelD1972]

Hi Rachel thank you so much for responding. I hope the increase in mycopenolate helps. Yes im so unsure about the news. Im 2 tablets twice a day with Mycopenolate and had no issues. I just dont want to rock the boat. Hearing from peoples experiences is really helpful. So thankyou for taking the time.