Mepacrine (anti malarial) for lupus! Particularly DLE & SCLE. Useful or not?🧐

[Lizzo32]

Anyone with any experiences of MEPACRINE?

THANKS.

Found this on Guys’ and St Thomas’ hospitals NHS Trust website:

guysandstthomas.nhs.uk/heal....

[StriatedCaracara]

I have been taking mepacrine in combination with hydroxychloroquine.

Energy levels improved, photosensitivity reduced. Been game changer.

[Lizzo32 in reply to StriatedCaracara]

Thanks very much for responding.

At a joint rheumatology/dermatology face to face clinic (2 consultant doctors). I was asked to consider:

Option 1 Reduce steroid and stay on MMF 500mg BD

Option 2 Reduce steroid and increase MMF to 1000mg BD

Option 3 Reduce steroid, keep on MMF 500mg BD and add in mepacrine (100 mg daily in the first instance though plan to reduce).

Not sure because MMF seems to be working for me.🧐

Still pondering because I don’t want to take another new drug.

[StriatedCaracara in reply to Lizzo32]

It has meant I can stop taking steroid.

I'm not flairing at the moment. First time in years felt like I do.

Worth trying, as good to be on an antimalarial.

This post is about hydroxychloroquine but could equally be about mepacrine, except no known eye issues with mepacrine. Maybe one day more people might take mepacrine than hydroxychloroquine, who knows.🤔🙂

healthunlocked.com/lupusuk/...

[Lizzo32 in reply to StriatedCaracara]

Thanks for responding.

In view of my pre-existing retinopathy HCQ is not for me.

But will have to think seriously about option3 over the coming weeks.

IMAO I would rather just have MMF, a powerful immunosuppressant! Not happy with some of the side effects of Mepacrine eg yellow skin and eyeballs. I don’t want to look jaundiced.😱

[Paprika60 in reply to StriatedCaracara]

Hi, I have a question. Did you have any trouble getting mepacrine approved by your Rheumy? I requested this to swap with Hydroxy as I have been on Hydroxy for 11 years and I am really concerned about its possible effect on my vision. I am a painter by profession so my eyes are my life. Yet, my doctor said absolutely no way. He described mepacrine as a dirty (!) medicine which is no longer used by Lupus doctors. I pointed out many are on it (according to this site) and yet he wouldn't hear of it. He said I was being overly concerned and I shouldn't worry! I got really upset when I returned home. I see that mepacrine is completely synthetic and I wonder if this is why. The problem with Hydroxy is that the damaging stage is asymptomatic until it is already to late. I am now doing Amsler grid test many times a week at home and am going to check my eyes every four months I think. Not only that I actually suspect Hydroxy causes extra fatigue in my case. Until I started it, I never had such fatigue issue as I have since not to mention the blurry vision. You mention reduced both fatigue and photosensitivity issues. Did they start with Hydroxy? Thanks!

[Whippet_lady]

I'm taking mepacrine, hydroxychloroquine and methotrexate. The HCQ and MTX didn't touch my rash, which I had for over 2 years, but once I started the mepacrine it went quite quickly. It's the only thing that has worked for me. I would highly recommend it!

[Lizzo32 in reply to Whippet_lady]

Thanks very much for responding.

At a joint rheumatology/dermatology face to face clinic (2 consultant doctors). I was asked to consider:

Option 1 Reduce steroid and stay on MMF 500mg BD

Option 2 Reduce steroid and increase MMF to 1000mg BD

Option 3 Reduce steroid, keep on MMF 500mg BD and add in mepacrine (100 mg daily in the first instance though plan to reduce).

Not sure because MMF seems to be working for me.🧐

Still pondering because I don’t want to take another new drug.

[Paprika60]

That's very interesting. I used to attend St. Thomas's (both lupus clinic and St. John's Dermatology dept) and they never once mentioned mepacrine then. During 20 years of my condition, I had never heard of this medicine until I started reading about it here on this forum. I am already on expensive biologics therapy weekly on top of hydroxy. My rheumy, out of concern that I may be tempted to reduce hydroxy on my own or stop it all together, had already written to my GP strongly warning against it. So if I go to private and get mepacrine on my own, he would easily think that I am doing it behind his back and am rebelling and this could all backfire...which I don't want as he is overall very kind and lovely...I am totally confused now. But thanks so much for your response.

[StriatedCaracara in reply to Paprika60]

There is a link to Guys and St Thomas in this post, near the end.

healthunlocked.com/lupusuk/...

I'm not worried about hydroxychloroquine affecting my eyes after watching videos in post linked below. It is balancing risks and benefits and not many get hydroxycholoroquine retinopathy and testing is available.

healthunlocked.com/lupusuk/...

Hydroxycholoroquine is a brilliant drug but by itself is not always as good as it could be. It did not get rid of my photosensitivity that probably drove my flares to a large extent

I can take a lower dose of Hydroxychloroquine because I take Mepacrine too.

It has taken.me four years to get to where I am.

My condition is probably very mild comparedto you. Never taken immunosuppressive let alone biologics. I think there are so many tastes and flavours to this condition to put it mildly. Then so much also affecting decisions departments make over time and what makes them change course.

Sounds like your rhuemy cares and has a plan

Maybe continue to debate with him though. He might change his tune with time. Maybe one day mepacrine will get licenced too

[Lizzo32 in reply to Paprika60]

Don’t worry so much about this GP!

Most GPs do not know much about lupus or the medications for the condition.

Most if not all GPs never diagnose or prescribe for lupus. They are simply not trained to do so. Hospital consultant doctors are!👆

Sadly my personal hesitation with Mepacrine:

documented side effects- :

yellowing of skin 👩‍💼👁️👁️and eyes+ black tongue and mouth👅.😱👆

Scary.🙅‍♀️