Mepacrine at leeds lupus clinic

[lupi123]

does anybody go to leeds lupus clinic and take mepacrine?

[Happykins]

Hi Lupi123,

Not sure this will be of any help to you - I live in Wales, but cross over to England for treatment.

I've been taking mepacrine for 5 years and have had no trouble in obtaining it as it's compounded by Boots.

Have you been told that you won't be able to have it prescribed?

Sorry can't help more x

[lupi123 in reply to Happykins]

St thomas's have supplied me with it for 15 yrs as my gp would not help...they said it was the cost but the hospital realised it made such a difference to my quality of life so they proscribed it and sent it through the post every 3 months.

The hospital in dewsbury i'm now under dont want to be responsible for proscribing it as they dont use it or have'nt in the past.....i look like i'm going to have trouble ahead!

[Happykins in reply to lupi123]

My surgery complained about the cost initially but my rheumatologist dismissed this saying that he couldn't begin to tell them the cost of other medications that he could have prescribed!

He doesn't have many patients taking it - I had an allergic reaction to hydroxychloroquine and it seems some GPs are put off by the fact it's unlicensed.

I get mine monthly from Boots, taking 50mg/100mg on alternate days.

Hope you don't have too much trouble in obtaining it - horrible to have to fight for everything but needs must x

[lupi123 in reply to Happykins]

they're talking about increasing hydroxy instead....not a good idea since i'm on 200mg a day already and new guidlines say that's the max for my weight since there have been an increase of reported eye problems lately!

The only brand of hydroxy i can take is zentiva since you cant get plaquinil now as all the others make me ill.

[Happykins in reply to lupi123]

Honestly, it feels as though others (ie your GP) are messing with our lives

Guess you'll just have to keep on insisting how much better you feel on mepacrine.

Hope it goes well & that you're able to access it again x

[lupi123 in reply to Happykins]

There was talk of refering me to leeds so i was hoping there might be someone on here at leeds maybe on mepacrine.

[Crazy_Cat_Woman in reply to lupi123]

Hey Lupu123, I go to Leeds (Chapel Allerton) but I’m not on mepacrine. I can’t tell you what medications they offer but the Rheumy team there has been really great for me.

[lupi123 in reply to Crazy_Cat_Woman]

Hi crazy cat woman,thanks for your reply,i guess it depends on the symptoms you have and we're all different. I suffer with light sensitivity and visual disturbence and i've had 3 strokes and mepacrine has worked for me.

I was under leeds st james in 2001 and went round in circles trying to get things under control and ended up in london where they helped me thank god.

They have discharged me as most of my probs have been ostioarthritis lately and they thought my lupus was in remission......now i'm suffering again!

I think they were just discharging anyone in london who was out of area who was stable to cut the numbers.

[lupi123 in reply to Crazy_Cat_Woman]

When i think back i was under a Dr Martin in leeds years ago and he did help me at first and i could hardly stand up at the time and he put me on methatrexate and meloxicam or something like that but i became so stiff and ill after a few years and i begged my gp to refer me to london because the only solution Dr Martin had for me was more methotrexate infact it was the only word he knew!

[SLJ67]

I’m in London and have been taking this since last August. As it’s an unlicensed drug my GP is unable to prescribe it so get my prescription from my Rheumatologist and my pharmacist orders it in.

[lupi123 in reply to SLJ67]

The problem is i'm no longer in london and my new rheumy will not prescribe it as it's not licensed and she had a meeting and they decided if i could not manage without it they would consider refering me to leeds but they did'nt tell me if they prescribe it there so i could be in a mess!

[SLJ67 in reply to lupi123]

Surely they should just be continuing your treatment especially as they should have your notes Keep fighting though. It’s hard work sometimes just tiring Good luck!