I started mepacrine today. 50mg x 3 times a week. In addition to hydroxy and MMF.

[Wendy39]

At last I have started mepacrine, as prescribed by Dr K in April. So that's the first point on my treatment plan ticked off.

From seeing my GP and her not being able to prescribe it off their computer system, to me going in to talk to the pharmacists face to face, to me collecting it, was 10 days including a Bank Holiday weekend. So in the end, no real issue. The longest part of the process was having to wait 4 weeks for the GP appointment.

I knew that there was a side effect of it turning your skin yellow, but I wasn't expecting them to be this bright! They are virtually neon yellow!

I am very pale, due to being photo-sensitive, is it wishful thinking that maybe I might look like I've got a bit of a sun tan instead? You've got to laugh.

[Hidden]

Hi Wendy. I think we both had our rheum appointments around the same time and it has taken me a fair wait (since 25th April) to get to increase my dose of MMF. But at least it's already a known quantity for me and comprises only of slightly smaller lilac coloured torpedoes (as Clare67 describes them).

I've just looked Mepacrine up. As one who failed to tolerate Hydroxy in several forms I was interested to read that it's another malaria drug. Fingers tightly crossed for you that it is one you can tolerate well and that it really helps.

If you do turn a shade of neon (or hopefully a nice mellow tan) then perhaps you could post a snapshot of here wearing fluorescent pink shades and green sun hat to set the tone (I'm that kinda gal I'd probably made a wee doll of you for my paintings!) ! X

[Wendy39 in reply to Hidden]

If I turn yellow, you're on! 😂😉☀️

[Hidden in reply to Wendy39]

...or even if you turn a little green please?! 🤢. Perhaps you and Coco collaborate on this - what with her fluorescent pink gastro pills and your neon? That said, I've seen her pic and she doesn't look remotely fluorescent pink! X

[Charliebear68]

Haha! Wendy - I hope you don't turn yellow, you'll look like an emoji 😂😂 I love your positive attitude, keeps me going!

I hope the meds help

C xx

[Wendy39 in reply to Charliebear68]

Umpa lumpa? 😂

[PMRpro in reply to Wendy39]

Wrong colour surely - they were bronze...

[maggielee]

Good luck...fingers crossed all goes well, any idea how long it takes to kick in ? 😄 I wonder how yellow..😰😈 m

[Wendy39 in reply to maggielee]

Do you know what, I've no idea! The Hydroxychloroquine took about a year for me for all symptoms and that was on full dosage. I think this is a low dose. Dr K did say to come back in 3-4 months but I think I might take this as post starting mepacrine, so we can assess if it's working??? X

[EOLHPC in reply to Wendy39]

Sounds right....am liking that you know the costs on this treatment & have figured out an economical approach...I wish I knew more about the costs involved in my meds. When I asked my NHS cornea expert about the bit wasted in each of my daily ciclosporin drop vials, he said: no worries, we've looked hard @ the costings & this amt of wastage fits in with the cost advantages of all other elements involved in this treatment...🤦‍♀️ I've always been dyslexic re numbers...my mind boggles...

[Wendy39 in reply to EOLHPC]

The pharmacist told me the price, bless her. It was over £700 but I can't remember how many 50mg capsules that was for. I wonder if the capsules are gentler on your tummy? I just hope that the tablets don't give me any bowel issues etc. I did ask her but she said she couldn't see an issue. But interesting that 50mg are capsules and 100mg tablets.

I think the MMF is an expensive one too??? But can't remember the cost.

Just as an observation, I came off the iron tablets about 2 weeks ago now, as Rheumy nurse has mentioned it and I checked with Dr K, he said he wasn't worried about the borderline hematocrit levels.

I know some people get constipation with iron supplements but that never happened with me. But I now think that it was maybe helping things in that department. I get diarrhoea and I am hoping the MMF will keep this under control, but I am definitely looser without the iron!!! It's a nightmare working all this out as you go along and now the mepacrine into the mix. I will be noting any further changes. Charming subject.

Hope you are having a good day.

Wendy x

[PMRpro in reply to Wendy39]

In 2011, the Northamptonshire prescribing advisory group said it was £20 per month at 100mg.

What does perhaps cost a fair bit is when they take the 100mg tablets and turn them into capsules by grinding them up and filling capsules. It is something done quite often here by any pharmacy so isn't expensive, David pays about 22 euros for a few months supply of his 2mg warfarin. But you never know in the UK.

[EOLHPC in reply to Wendy39]

If your diarrhoea gets going on myco mofetil, you can try myfortic...I have a great lupus friend who switched successfully for that reason 👍...myfortic is processed differently by the body, but does a similar job. Last I heard, myfortic is slightly more expensive

[Wendy39 in reply to EOLHPC]

Thank you, I'll make a note of that. x

[PMRpro in reply to EOLHPC]

Warfarin is cheap as chips, maybe 3 or 4 euros for a month - but requires monthly blood checks, more often when things go pear-shaped. The new generation anticoagulation drugs are over 100 euros for a month and maybe need 2 blood tests a year. Clear case that warfarin is cheaper you would think?

The cardiologist told me the other day that the new generation stuff pays for itself in 10 months when everything is taken into consideration.

[Wendy39 in reply to PMRpro]

I totally get why doctors and patients should be aware of all of these issues. So many demands on their budgets that weren't there when the NHS was set up. Fertility treatments. Obesity. Gastric band procedures. Cancer and chemo-therapies. Etc. Etc. All new issues for the NHS. Then there is us with our AI issues and more of us being diagnosed all the time due to awareness and then on medication for years, possible a life time. I for one, am glad that I am not having to make those impossible decisions.

[EOLHPC]

🙋Your Neon Yellow 💡 Life Begins 🥂🍾💐

Seriously though: glad your funny bone is in good shape 👍👍👍👍

Looking forward to learning how this goes

🍀😘🍀😘🍀😘 coco

[Wendy39 in reply to EOLHPC]

Luckily these are quite small tablets. The photo makes them look bigger. The 50mg capsules are about £700 a pack. So these 100mg tablets to be cut in half were a cheaper option. But easier to swallow that the MMF horse pills! Maybe I'll glow in the dark? 🙈🤣

[EOLHPC in reply to Wendy39]

😆😆😆😆....I keep waiting for the 4 psychedelic pink methylcellulose tabs I've been taking daily since early April to turn me 💄👄 pink 🤷‍♀️

[EOLHPC in reply to EOLHPC]

OOPS: just spotted twitchy's mention of this above 😉 💋

[PMRpro]

Hope YOU don't go that colour!

[Lupiknits]

I hope you don't go that colour! Pale and interesting is more the thing ( I tell myself daily). You have a fab sense of humour, Wendy x

[Charliebear68]

Oh Wendy,

All I can hear in my head is oompa loompa dickety doo, I've got another puzzle for you...😂😂😂 You do make me laugh 😚😚 Hope you had a good night

C xx

[misty14]

Hi Wendy

Do hope the mepacrine help you and you don't turn yellow!. Hope they don't take long to work either. Fingers tightly crossed.,X

[Charliebear68]

Hi Wendy,

Not sure if you've seen this i just stumbled across it: raredisease.org.uk/news-eve...

Have a good night,

C xx

[Emz04]

I'm starting that this week 3 times a week along with steroids and hydroxychlorquine twice and day and azathioprine I'm very pale too with red cheeks was hoping to looked tan not yellow altho I'm already peeing highlighter yellow lol did it help you so far nothing really working and I keep catching colds and flu's and so fatigued and ache everywhere and keep gaining weight even tho I'm not eating and swollen ankles on my feet most day for work