[nicky00]

Hi All
Thanks for the extra replies and questions.

Claire...The Hosptial Pharmacy gave me a months worth of tabs 100mg per day , everyday.

I have just come back from the doctors for a repeat and she has printed off a letter from the Rhumie for 300mg a day.

This a copy of the letter


Diagnosis S.L.E.

Medication Change: Introduce Mepacrine 100mg OD wiht a view to increasing by 100mg OD at monthly intervals up to 399mg OD.

Lab tests 27/5/08 Hb 11.6 WBC 7.4, Platelets 266, ESR 27, Creatinine an Electrolytes normal, LFT's normal, CRP >1, Autoimmune profile awaited.

Plan : For trial of aditional Mepacrine treatment after discussion with patient. To introduce slowly as being added to Hydroxychloroquine. For monthly monitoring blood tests. Clinic review in three to four months time.

I saw this lady for review today. She continues to be troubled by variable fatigue and some vague rheumatic pains. The fatigue she continues to find unacceptable. We have discussed the possibiliity of her going onto additional Mepacrine therapy, which is sometimes used. It is about balancing potential benefits versus risks. Although I am not at all convinced that adding in the treatment will make a significant difference in this lady, there is only one way of knowing and that is by giving it a trial and I have therefore commenced it today with a view to it being gradually increased over the next three months, subject to tolerance both clinically and on laboratory testing.




Ok so I feel better and Im in my 2 week of taking it.
What about the dose ( Recommendation from St Thomas was 3 time a week!).

Feels as if this Rhumie is going to OD me ?

No signs yet of yellowing

What does anyone else think about the dose..

He is a stinker for non belief in it helping

Any thoughts?

NIcky

 

[Clare.T]

Hello Nicky
Is this your local rheumy?

Methinks something is wrong with this dosage. I have never heard of anybody taking more than 100 mgs a day. I know that St Tom's usually prescribes 100mgs 3X a week. They are quite happy with my 100mgs a day though. Dr Wallace says the usual dose is 100 mgs a day & up to 200mgs a day can be administered but 25mgs daily might be effective.
I wonder if s/he has mixed it up with Chloroquine ? This shouldn't be taken with Plaquenil but that's the sort of daily dose that might be used instead of Plaquenil.
I take 500mgs chloroquine and 100mgs Mepacrine.

I would definitely check that out before taking it at above 100mgs a day. You should see a difference fairly soon, within a few weeks Have you not felt any improvement yet?
I expect you'll be hearing from Lola and the others here who take Quinacrine /Mepacrine
Cheers
Clare

PS isn't 'qd' for daily ? Anyway that isn't a very recommended way of writing They are advised to use once a day.
PPS best taken in the morning given that it is a CNS stimulant

 

[LolaLola]

That does seem like a high dose to me. I take half a tab six days a week, so equivalent to other people with three tabs a week. (I just find the dose easier that way from a digestion point of view).

I do have to say that I get skin yellowing on even this dose,so you will need to be aware of that. I feel you need clarification of your dose. Mepacrine is a good med though.
If I can help at all please ask.
x Lola

 

[Clare.T]

Me again

I have started a new thread with a more specific title.

The 'mother' thread is
http://www.thelupussite.com/forum/showthread.php?t=68413

Is this a local rheumy ordering it from local hospital? Or your GP?

I hadn't thought about the yellowing aspect presumably because I haven't been noticeably affected.


Clare

 

[nicky00]

Thanks Lola, yes I will definately ask thanks.

Claire
I thought I was going bonkers, so thanks for moving the thread....

I can feel benefits already and I have been taking them for two weeks yesterday.

I left the consultant and he did not give me any advice on how many to take. Thinking when I got them from the hospital pharmacy they would be able to tell me ,I found even they were confused what dosage I should be on.

Im expected it turns out to get the monthly reorder from my GP.She has already written me out a perscription and Im awaiting on my local pharmacy who are having ' to order them in'.

When my GP printed off the letter she had received from my local consultant Rhumatologitst (the letter I copied in this post) as I asked her about correct dosage etc. She couldnt tell me what she thought was the correct dosage as 'she wasnt an expert'.
Looking back I suppose she could have written back to the consultant to save me the hassle.

It does seem an awful lot dosnt it.

I have left a message with the Rhumatology nurse. I hope she just dosnt look at the copy of the letter and tell me what is written there.

My main worry is that should I increase the dosage and therefore the possibility of side effects then that may justify my reluctant consultant taking me off them which Im sure he would be quite happy to do as he never really backed me going on them in the first place.

Nicky

 

[BigSis]

oooh Nicky,
'When my GP printed off the letter she had received from my local consultant Rhumatologitst (the letter I copied in this post) as I asked her about correct dosage etc. She couldnt tell me what she thought was the correct dosage as 'she wasnt an expert'.'

That's worrying:worried:
We know Gp's aren't experts but we hope they know how to find out the correct dose of a drug.
Good luck with the rhuemy nurse........mine has always been very helpful

 

[Clare.T]

Good for the GP to prescribe the Mepacrine - mine won't. It's that rheumy that I wonder about! Very big wonderings to put it nicely. I hope it helps you a lot for your own sake of course but it would be oh so satisfying to prove him wrong wrong wrong wouldn't it !:hehe:

About dosages
see

http://www.bad.org.uk/public/leaflets/mepacrine.asp

Dr Wallace says "....100mgs are given daily, although up to 200mgs daily can be administered) but as little as 25 mgs can be effective"

Nicky I would stay on whatever dose you are on currently for several weeks maybe a couple of months- that might be enough- then increase to 100mgs a day and see if that makes any difference. I don't know when the maximum effect would be experienced.
Meanwhile I would email the lupus nurse and ask her to get an opinion from St Tom's mentioning the name of the doc you saw there

All the best
Clare

 

[nicky00]

Thanks Claire for that link.
Having read the info and noting the maxium dose would be 300mg per day but generally most people seem not to have to take that dose even taking into consideration body weight etc.

2100mg per week seems exceptional to me.

Im going to go my own way and keeping to the 100mg per day for now.The worst that can happen is I bide some time.
I could do no harm by emailing the St Thomas research doctor as well.

The nurse locally has not yet replied.

There is also the possibility but I keep forgetting of emailing the nurse at St Thomas's.

Thankyou so much for all your help and info.

Nicky

P.S. Yes oh the sweetness of proving Mepacrine works!!, but I doubt the dilly dombat Rhumie will take that on board too swiftly.

 

[Clare.T]

Hello Nicky
Sticking to the 100mgs a day sounds a good plan to me.
Where did the 300mgs a day come from?
7 x 399 mgs a day as the doc said =2793 mgs a week ! And just make absolutely sure you don't overdose with that extra gramme .............:rotfl: Afterthought:Or was the 399 a typo ?
Cheers
Clare

 

[nicky00]

Hi Claire

oops yes 399mg was a typo, should be 300mg which was on the letter from consultant to GP.
Shall go back and re edit.

Bigsis (just saw your post)
Yep, she must have a book of reference even if the final decision is with the consultant.
Can you imagine if I was talking about a different more potent drug.One wonders what the reaction would be in any case.

Thanks

Nicky

 

[nicky00]

I have found a brilliant article (ok some is hard to understand) on studies of the Mepacrine drug.
I was googling CNS involvement becuase of some symptoms I am experiencing and this link I am about to post came up.

5 of 15, and 9 of 15 page numbers I think mentioned the dosage but I found this conflicting.
Statement was 300mg then it stated no more than 100mg daily?.

Its not an easy article to read but what I did understand I found facinating.

http://www.quinacrine.com/archive/wall89.pdf

P.S. if anyone want to pull out the relevant info into an easy read term then please do!!

 

[LolaLola]

Thank You,
As I read it 100 mgms really does seem like the optimal dose in Lupus.
It was interesting to me as I take mepacrine quite successfully.
x Lola

 

[Clare.T]

Thanks for the reminder of Dr Wallace's paper . He says that decades ago the initial dose was 200-300mgs daily but then it was agreed that 100mgs daily was much less toxic.
In "How to use Mepacrine and maximise its safety and effectiveness in lupus"
Point Number 1 is Never exceed doses of 100mgs daily..
Point 2 is: If optimal effects are achieved after 3-6 months begin tapering by one day a week every 2 months.

Point 4 is: Discontinue if no effects are seen after 8 weeks lack of response.
Elsewhere he says that the onset of action is 2-4 weeks but the maximum benefits take ? 6-8 months ? I forgot to note that !

There is a reference to dosage for ghiardiasis,a sort of parasite infestation, which says 300-1,000mgs daily for a week.

In the chapter on anti Malarial use that he wrote in Dubois Lupus, Dr Wallace says "....100mgs are given daily, (although up to 200mgs daily can be administered) but as little as 25 mgs can be effective"

I think we have satisfactorily established that 200-300 mgs a day is completely outdated, dangerously inaccurate information !

Cheers
Clare

 

[nicky00]

Thanks Claire, you have confirmed what I had read

My husband has just read it called my Rhumie a (rude name) and said worse than that(repeat of rude name, he is dangerous.

Amen to that

 

[LolaLola]

Dear Nicky, I am so glad you have an answer. I would have some serious doubts about your Rheumie. Is there any chance of a better one,someone who specialises in Lupus. It is not unheard of for a Rheumy never to have seen a case of SLE,so we need to be careful.
I had the most appallingly ignorant, but well intentioned, local Rheumy years ago-and I am afraid I had to move on to St. Thomas'. It was just a waste of breath here. The guy was sympathetic but clueless. It has improved a bit locally now so my Daughter sees the new local Rheumy as well as Tommies.
x Lola

 

[nicky00]

Hi Lolalola

Yes I have always had my doubts about my Rhumie.
The really good thing is that he did put me on Plaquenil taking on board symtoms and a slightly high ANA.(ok maybe a few other things) but that is about as helpful as he I fear will ever be unless I push a little.

At least yours had sympathy:lol:

Im with you on how much experience they may or may not have.
Thankgoodness you all those in here who provided so much.
I have been able to move forward thanks to all the info and support

Glad your daughter has a better Rhumie...at least there is progress.

I can always go to St Thomas if I try to get a referal but for now I will wait and see what happens.

Take care
Nicky

 

[nicky00]

Just thought I would post an update on my current feedback re dosage from The Rhumatology nurse that I received this week.

Bear with me as it was Tuesday and Im referring in part to some scribbled notes I made.

She looked up the B.M.S Book ( Im assuming that stands for British Medicine/Medical something.
Ive done a quick Google and all Ive come up with so far is the British School of Motering:hehe:.

Having no luck with the above reference book she then tried the Electronic Medicine Compendium., then I think Medicine.org.uk?

I told her about the paper by Dr Wallace and she dismissed it as it was over 5 years out of date and they dont take into account anything outside that period that is considered non current. ( I did say off the top of my head it was written in 1989 which could have been wholey inaccurate but I was rushing to work and I have a slow to fire computer and she phoned me unexpectedly?

Sorry will wind up this story...

Her final opinion was to say that the website she was looking at which is the British Dematology recommendation could in fact conclude that 300mg was the top dose.

She did however suggest that its my body and I dont have to follow the Rhumatologist dose 300mg if I dont feel happy.

I have to say she was very helpful.

I believe this is the last you shall hear from me re the dosage

Nicky

 

[Clare.T]

Hello Nicky
It is very good that she took the trouble to investigate and her advice to do as you wish was excellent and dispelled any fears you might have had about not taking the recommended dose. Why take more than necessary of any drug.

BAD says

What dose of mepacrine should I take?
Your doctor will advise you about this. For skin conditions, the dose may be as small as 50mg (half a 100mg tablet) taken three times a week. A maximum dose would 100mg taken three times a day. A dose for children is 2 mg per kg body-weight given three times daily (to a maximum of 300 mg daily). It may take several weeks to reach its full effect.

It is true that Dr Wallace's paper is from 1989. However the other quotes I gave are from his chapter on antimalarials from the 2007 edition of Dubois' Lupus Erythematosus, the SLE Reference book.
You can't dismiss everything out of hand because it is more than 5 years old although it is a good rule of thumb. If information is not wrong it is often not up-to- date. We have to learn how to evaluate sites and information from any other sources too. Often forums are unique sources of the most up to date practical information. This one is anyway because we have such a remarkable breadth of experiences
This has got to be the definitive thread about Mepacrine dosage anywhere on- line ! :lol:

I am glad you are already seeing some good effects - has the fatigue improved?


Clare

 

[LoopyLoo]

Good for you again! Hope you are feeling better and the fatigue has lessened. Was it possibily the BNF she was looking at - British National Formulary. It has replaced the old MIMS book that medics used.

I got the latest edition from eBay :hehe:

Lots'a'luv, :foryou:

Pam xxx

 

[nicky00]

Yes

Fatigue has really improved....

All day yesterday up at Wimbledon, queued for two hours .Although the queue believe it or not was hilariously good fun even with two kids in tow I did by the time we arrived through the gates feel very glad to sit down. Who wouldnt!.
I managed the whole day feeling good. This time last year again I remember how tired I felt even sitting down at Wimbledon.

I feel a sense of 'normality' now. Far more engergised.

Plaquenil although working gradually once past a ten month period did help me but had a 'ceiling' of effect.
Exactly a month after my dad died this year I went back to work 3 days a week part time.


My friend who is the only one who knows at work about the lupus made sure my hours suited me which helped. Still of course I did struggle. Not so much at work but after and on my days off.
Always feeling I was playing Russian Roulette and praying that could pace myself was at times quite stressful in itself.

Now on the Mepacrine I can be more dynamic, think better and have oodles of engergy which has given me more confidence.


Nicky

P.S. Mornings are still my biggest challenge though I still feel a sense of initial fatigue and it take me a good hour to come round.