Does anyone have any experience of Mepacrine?

[wigglemac]

I have SLE and have been taking Hydroxychloroquine with no relief, there seems very little info out there on Mepacrine so any info would be appreciated. Many thanks

[biddy75]

Hey wigglemac, i am on hydroxy and mepacrine and find they work well together, how does the lupus affect you?

[wigglemac in reply to biddy75]

Hi Biddy75. Thanks for responding, I am really struggling with the chronic fatigue and joint pains. I've been on hydroxyl since last October, but just now been prescribed 50mg of Mepacrine three times a week. I was wondering what the side effects were, how long it would take to make a difference and my consultant said I could drink alcohol but the label says not so not sure what to do.

[biddy75]

Hey wigglemac, im on 100mg daily along with mycophenalate 1g three times daily, lyrica 100 palexia 300 daily, ive had no , side effects with this dose, i don't drink because im on such a mixture of medication

[wigglemac in reply to biddy75]

Thanks biddy75

[Hullsue]

I changed a few years ago to Mepacrine from Hydroxychloroquine - and have been a hundred per cent better - touch wood no flare ups at all -I only take half a tablet a day so haven't had much change in my skin colour - no side effects no painful joints - I love it the only down side is supply - you can only get it from Boots the chemist and they sometimes have a problem getting supplies so ask your GP for an extra perscription so you have reserve supplies - it is made in Columbia apparently and you know they are good at drugs ! lol - just seen the query about drink ! - well I have never stopped having my odd tipple and not had any side effects from that either

[wigglemac in reply to Hullsue]

Thanks Hullsue I have already come across a problem with the supply I asked my doctor and he said he couldn't prescribe it and needs to write to the consultant! I glad you enjoy the odd tipple too! Thanks for giving me hope.

[lizzyhannah]

Hi there I could not take hydroxy, bad reaction and was told that mepacrine was more for the skin problems that we lupies have.Never had much of a problem there mind other than facial and having very dry skin everywhere. So it has not helped much with that. I still feel exhausted and my joints and muscles are still very painful so sorry personally I do not think anything works for me but I hope they work for you.

Lizzyhannah

[wigglemac in reply to lizzyhannah]

Thanks for your comments lizzyhannah, I hope you find something that helps you soon.

[tiredmum]

Good morning, I took 50mg every monday, wednesday, and friday along with 400mg hydroxychloroquine. It helped to ease some of my symptoms but didn't stop them, unfortunately I did end up on mycophenolate mofetil. However, I didn't get any side effects from it at all.

[wigglemac in reply to tiredmum]

Thanks for your comments tiredmum!

[Sjink]

Hi. I take mepacrine 100mg twice a week, more than that and the dye in the tablets colours my skin a bit yellow. Mostly it helps with fatigue but doesn't seem to stop occasional flares when I need to take steroids - prednisilone - as well. I use pain meds for joint pain. Can't take hydroxycloroquine as it affects my eyes. Xx

[wigglemac in reply to Sjink]

Hi sjink, thanks your comments do you mind me asking what meds you use for your joint pain?

[Sjink]

Hi wigglemac

I take paracetamol (2x400mg) and dihydrocodeine (2x30mg) four times a day as my lupus seems to entail constant connective tissue and muscle pain. It really does help, I could not work (I do 21 hours a week) without pain medication. I very occasionally take ibuprofen as well if the pain gets too much - taken at the same time as the Paracetamol and dihydrocodeine twice a day (not four times a day) for a couple of days can reduce the inflammatory pain a little. I have had periods on stronger anti-inflammatories (nsaids) but my lupus clinic don't encourage this because of all the heart and stomach problems etc that are associated with them i think. The biggest problem I have is that when I get severe headaches non of this pain medication works! But hey ho I mostly manage. I also find pacing activity carefully (not going at things like a mad thing and then collapsing - boom or bust!) and resting frequently really help the pain. Oh and a strong black coffee with the pain meds also seems to make them work better ha ha. I have also done a pain management course and I find a regular meditation practice(particularly body scans) help. hope this helps. Its worth pestering your doc to get the pain management as good as you can, it gave me back my life outside of home. x