Hi everyone,
I have recently started taking Mepacrine as I had to stop taking hydroxychloroquine due to macular degeneration.
I was wondering if anyone else has had experience of any side affects like nauseating and giddiness and how long this is likely to last?
Jo
I have taken it for 15yrs,it can make you rather flushed if you drink to much wine on it i found but you are not meant to drink booze on it really so you have to be careful!
Also get up slowly in the morning or you can feel dizzy!
On the whole it improved my skin rashes,photosensitivity,double vision and gave me a better quality of life.....my consultant said he thought i was in remission now since menapause so reduced mine and my symptoms are back!!
Hello lupi123. Do you mind me asking how long it took to improve your skin rashes? Only I was prescribed it, in addition to my hydroxychloroquine and 3g MMF, back in 2017. Three years later, although my rash has improved, it is far from completely gone! I had my batch of mepacrine recalled recently and I haven't been able to replace it yet, but it has left me wondering if it really is worth it. Three years and still a red rash on my nape of neck/scalp. Wendy
Hi Wendy,i'm so sorry for this late reply! Have'nt been on the site for a while.I had a patch of depression and shut off for a while.
Anyway about mepacrine,i took it formany years,about 15,never went yellow,possible my finger and toe nails slightly but hardly noticeable and i started on 300mg a week,taking one 100mg tablet alternate days,mon,wed,fri. My rashes were better but my consultant increased to 400mg week and i was mostly rash free. It does taste nasty however you just get them swallowed and have a swig of something more pleasent after.
They were a game changer for me and i was also on hydroxy 400mg a day.
My hydroxy has been reduced,i suffered 3 strokes and the first took 50% of my vision in each eye so i no longer drive and there are guidelines now that 400mg is over the recomended dose and they feared for my remaining vision been damaged.
I have been moved to a local rheumatologist(sorry my spelling terrible im sight impared as it is and make mistakes so excuse me) they are helpful with my arthritis but totally clueless with lupus! Tottally! I dispair.
I find that they blame all / most of my joint / muscle pain on osteoarthritis - because they understand that and then can avoid having to treat then. I saw an Orthoapedic Surgeon last October/November and he told me that my MRI of hips etc did not show osteoarthritis that would explain my level of pain and that as my symptoms came in flares with my lupus, my symptoms were inflammatory in nature. Then I see a Rheumatologist in February who says, no this isn't lupus, this is osteoarthritis. So nothing gets done. So annoying. It makes you feel like a liar, especially when you relay what the other doctors have told you but they dismiss it, as it you can't be trusted. Why would I make it up? Anyway, I do get it. I really hope you can ask for a referral to a lupus expert / Centre of Excellence and gets some help with your increased symptoms. Thank you for helping me with your experiences. Wendy
Hello lupi123
Thank you so much for replying, it is much appreciated. I hope you are feeling a little better.
It's really good to hear from others on mepacrine, as it isn't a common drug and to be honest, when I see doctors other than the lupus expert who prescribed it, they are horrified and have tried to warn me off of it.
I am photosensitive and have that rash. So to hear that you found it protected you from the sun and skin rashes is very interesting to me.
It is probably helping me more than I realise, just difficult to separate the benefits of each drugs when you are taking hydroxychloroquine, mepacrine and MMF, plus amitriptyline.
It's a shame that you cannot go back to St Thomas'. Have you ever asked? It sounds like you need expert input again. Are you in England or Wales? If you flared up again, I would think it reasonable to ask to go back there.
I am in Pembrokeshire, Wales and we faces many challenges. It seems that many doctors do not fully understand lupus, the blood tests related to it and the drugs - that are used routinely by lupus experts - so they lack confidence to treat as robustly, so many are left to just muddle through, effecting their quality of life, their jobs, their families.
I really hope that you get some better care soon, it really sounds like you need it, but difficult to fight for it, when you are so low.
My best wishes
Wendy
Well i only left st thomas in jan and at first my new consultant did help with my osteoarthritis,i have had physio and injections in my hand which helped but then along came covid! She asked me to send pictures of my rashes about 3 months ago and said she thought they were psorisis which i expected from her bit though possible i dont think so but she can not give me mepacrine so she told me to contact my gp who also asked for photoes and she agreed i need a skin biopsy....they have arranged nothing just going round in circles. Thanks for your reply
Very strange. I think, possibly, that she can give you mepacrine but she doesn't want to or doesn't realise it??? My private lupus doctor recommended it to me in a letter to my GP and my GP added it to my repeat prescription. That was 2017? My GP never questioned it. Do you have anything in writing from St Thomas' that you should take it? Just a thought. COVID is causing havoc with a lot of NHS patients. I hope you get some help soon.
Would this persuade either of your doctors? Mepacrine is not licensed for lupus but it is used by many lupus experts.
I have now got rashes on both legs since they told me i didnt need mepacrine anymore and discharged me from st thomas,london and said my lupus was in remission. Im suffering with double vision type symptoms regularly just like before i was given mepacrine and the rashes are returning and the new hospital im under tells me they can not proscribe mepacrine,they are clueless!
When i was given mepacrine at first i was very light sensitive could hardly bare to open the curtains on a bright day and lived in dark glasses and it was life changing for those symptoms and the double vision i suffered with. It took a couple of months to see the remarkable change it made but totally improved my quality of life.
I took it for years had great effect only bad point is its uncoated and tastes shit I used to get mouth full of coffee drop tablet in and swallow as quick as I could as has horrible taste. I had cancer 3 yrs ago after that lupus got worse and it didn't help after that!☹
Morning, I have taken Mepacrine for at least 6 years. I don’t have any side effects but it tastes so bad it makes me shudder. You can’t take alcohol with it. However it really does make a difference. Good luck.
Hello
Sorry for the delay in replying to your post. It caught my eye, as not many people take mepacrine, but I do.
I was prescribed mepacrine in the summer of 2020, three years ago.
A couple of months ago my batch of mepacrine was recalled and I haven't been able to replace it yet.
I started on 50mg 3 times a week and then it was increased to 50mg a day.
It has left my wondering if it is doing anything to help me. It was added to help with a skin rash, at the nape of my neck and scalp - which was biopsied and showed active lupus at all levels of skin.
However, I still have that rash. It has got smaller but is hasn't completely gone.
It is impossible for me to say what drugs helps which symptoms, as I take 400mg of hydroxychloroquine and MMF every day too. The MMF was 3g a day until last year when I reduced it to 2g.
Hydroxy was horrible when I first started taking it, noisy tummy etc but this all settled down quite quickly.
You must talk to your doctor about any concerns about lupus medication. Do you trust your doctor? Do they understand your lupus?
I struggle with local lupus care as they do not seem to understand the illness very well at all or the drugs used, and so I go to a private hospital to see a lupus expert in London. I trust him. I will be discussing the mepacrine with him at my next appointment.
Do not forget that these drugs are often preventative too. In that taking them prevents flares of disease and therefore helps protects your organs too.
Mepacrine is prescribed by a few lupus experts.
bad.org.uk/for-the-public/p...
Guys and St Thomas' included.
guysandstthomas.nhs.uk/reso...
I would give it a few months before making a decision about whether the side effects are worth it or not. If you only take this for your lupus, then you will be able to monitor your lupus symptoms versus the side effects. We are all different, with what symptoms effect us and what meds work for us. No two lupies are exactly the same. If you can't carry on with mepacrine and hydroxy is a definite no because of your eyesight, what other options are there for you? Hopefully your doctor can help you too.
I hope I'be helped a little.
Best wishes
Wendy
No they just dont and she said never have and she does not want to prescribe something she knows nothing about and it looks like she does'nt intend to change her mind. she's not a lupus specialist but she said she may consider refering me to leeds lupus clinic depending on how things go but with covid i just have telephone consultations ans she does not follow through.
St thomas's said my gp could prescribe as recomended by them but they refused due to cost. St thomas 's also said if i could not manage without it and got no help i could ask to be refered back to them.
Hi just picked up on you comments re Mepacrine. I am on Mepacrine about 2 and half yrs for Sjögrens . I also have Lupus . Initially went to Dermatilogist with skin lupus .first lot of steroids put it into remission for few months. Came back with a vengeance. Tried a few medications over next year without success. Dermatologist referred me to rheumatologist he diagnosed Sjogrens and put me on Mepacrine. Mepacrine helped very quickly with fatigue and other symptoms.I have yellow skin but not really a problem if it helps with other symptoms. But it does cause some brain. Continued trying other treatments for Lupus and chronic skin eventually went on Methotrexate 8 mts ago which cleared skin and burning symptoms.Had to go off methotrexate this week as had so many side effects. Mind you with different medications hard to tell which is causing side effects. Had a bad episode last week lost some power in leg and arm and usual fatigue & brain fog was chronic. Went to rheumatologist immediately he said it was neuropathic symptom of Sjogrens not common side effect.
So as you can see as Sjögrens and Lupus are very similar conditions so hard to tell which medication causes which side effects. But I did not have any real problems with Mepacrine it help symptoms of condition. Both consultants are looking to see if Methotexrate causing the side effects to get worse. Hope this helps. M
I took methotrexate years ago before my sle diagnosis and i was not able to stand up at the time with arthritis....it was like a miricle drug at first and got me on my feet again but it came witth other side effects and i was a mess four years later. I didnt walk i shuffled along and was heavy and fatigued couldnt stand for long and i ended up on a trolly in A&E in the hospital in leeds where i worked. I wont touch that stuff again now but was grateful at the begining. Its strange how our bodies change and what works once doesnt always work later on! This strange illness we have changes over the years though we improve in some symptoms it throws something else at us.Its a bitch!
Thanks for your reply. Yes I agree 100% . After 2 years with skin getting worse it was like a miracle. Like you at first one to days out of sorts but as the time went on side effects got worse and worse sometimes lasting 5/6 days a week. Fatigue is chronic but I’m sure you Know only too well how bad it can be. It’s great to hear from someone with same symptoms as sometimes you think you just need to stop complaining. Is it all in the head. I got to the stage when I think I was toxic.
Consultant dermatologist rang me last week and said not to take Methotexrate we would take a break and see if I improved. But she’s worried about skin. But I have no life like this getting worse each week she did agree.
Have apt with her on Thursday so will give you update. She feels it’s it Lupus condition but I think it’s the medication ?
Thanks again
Not sure if I’m doing the right thing
I've stopped taking my medication
worried about trying methotrexate.
