Mecrapine

[jimbo1605]

My wife has just been prescribed mecrapine to add to hydroxy. Does anyone know how to buy this at reasonable cost - I have been quoted over £500 for 12 tablets! and have been told that nhs is reluctant to dispense it.

[Wendy39]

Hello again jimbo1605

I think we've chatted before?

I went to see Dr Kual at London Bridge in April and he put Mepacrine in my Treatment Plan. He didn't give a private prescrition for it. That would have been way too expensive for me. So, I made an appt with my favourite GP to discuss the new diagnosis and treatment plan. She couldn't find Mepacrine on her list of drugs to prescribe/dispense on her computer system. So she said, leave it woith me, I'll speak to our pharmacy for you.

I didn't realise at the time Mepacrine is unlicensed in this country.

Anyway, a few days went by and I had heard nothing. I called into the surgeries pharmacy and asked to speak to the head pharmacist about it. She had spoken to the GP and was trying her best to get hold of it.

I had been prescribed 50mg 3 times per week. But the 50mg capsules were about £700 for one lot. So she had researched it further. She told me the 100mg tablets were much cheaper - but didn't say how much. She asked if I would be willing to have the 100mg tablets and cut them in half. We discussed side effects and bowel issues as I get IBS/diarrhoea symptoms with my lupus and she said she didn't think there would be an issue.

So I went with the 100mg tablets to cut in half.

We coildn't get them fast. After seeing Dr K on 21st April, I actaully started the Mepacrine on 5th June this year.

As I said I take 50mg three times per week, Mondays, Wednesdays and Fridays. Along with 2 x 200mg of hydroxy and 3g a day of MMF. It took a while for me to see the benefits. But now, 4 months on, I can really feel it. I haven't had a flare since a big one Feb/March/April. My headaches have gone. My ache and pains are better. My IBS/Diarrheoa is under control. And my energy levels are brilliant. I still need to pace myself. During the school week I nap in the afternoons so that I can cope with my 3 children's after school clubs and cooking a meal etc. But this combination is working for me. I ahve just enjoyed a hen weekend in Liverpool with friends. Before Mepacrine this would have been impossible I think.

I will attach a link to my post about Mepacrine. I don't remember getting many replies from people on it. As it's unlicensed I don't think it's widely used. I may be wrong.

If I were you, I wouldn't pursue the private route for it. See your wife's GP. Explain. Say you know others prescribed this on the NHS for lupus and ask for it to be added to her NHS repeat.

My pot still has loads in it - I think it will last until January. So although expensive, as I only use 1.5 tablets a week, it is lasting a long time. They taste very bitter. I take them with a little milk, in the morning with my other meds. They are similar to Hydroxy. They aren't an immune suppressant but an anti-inflammatory. they are prescribed for SLE/DLE/SCLE and are good for skin issues, aches and pains and fatigue.

Let me know how you get on.

Best wishes

Wendy

healthunlocked.com/lupusuk/....

[Sudi in reply to Wendy39]

Hi, if you haven't done so already I'd suggest paying for a PPC,it's £110 a year paid monthly but it covers all you medication requirements. I found this such a great help,now due to age I get them free

[Wendy39 in reply to Sudi]

I get free prescriptions as I live in Wales. Before everyone gets excited, I totally disagree with this policy. Our NHS is falling behind England's and we have longer waiting lists for lots of ops etc. I would rather pay for prescriptions and have better treatment and shorter lists.

[littlemissp in reply to Wendy39]

I am also on mepacrine and cut a 100g tablet in half and take 50g three times a week. I also take chloroquine five times a week. The mepacrine was prescribed to control the skin problems that I have due to my lupus. The pharmacist has to place a special order for the mepacrine but I only have to pay using my pre-paid prescription card.

Speak to the pharmacist and ask about getting the 100g tablets maybe they might be cheaper. Good luck, I hope you manage to get them more cheaply😃

[Wendy39]

Have you managed to resolve this? x

[Wendy39]

I meant to attach this leaflet for you before.

I was thinking that maybe if you printed it off for your wife's GP? It shows that Mepacrine is prescribed for lupus, despite it being an unlicensed drug.

Worth a try.

guysandstthomas.nhs.uk/reso...

[jimbo1605 in reply to Wendy39]

This leaflet is great thanks I sent it onto our GP who is very reluctant to prescribe at the moment.

Thanks for your help.

[Wendy39 in reply to jimbo1605]

I wish we could find others on this drug, so as to find out how they got it prescribed. Best wishes.

[AnnS]

I paid for the first supply, also prescribed by Dr Kaul at London Bridge, and they were extremely expensive. My GP wouldn't prescribe it under any circumstances due to it being unlicensed. However, I was also under the care of the Lupus Unit at Guy's Hospital and they prescribed 6 months' supply from their pharmacy. Thereafter, they sent prescriptions to my local Boots who were able to order it. I recently stopped using it though, because I didn't think it was helping.

[Wendy39 in reply to AnnS]

It is very frustrating how we are all treated so differently. Although I think my GP is extremely helpful, as she feels that I have been badly treated one way or another and so wants to help me. She added Mepacrine onto my repeat prescription on Monday this week, as Dr K wants me to stay on it and I am nearly our of my first lot of them. I really think it would help us all if there was some sort of guideline or agreement about these issues that we face, so we are all treated the same way.