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Discussion Starter · #1 ·
Firstly ...bear with me as there is a lot for me to wade through having yesterday had a very lengthy discussion with my Rhumatologist about this medication and his reluctance to try me out on it.

I was origially recommended by a Dr at St Thomas hospital in London(whilst I took part in an 8 week drug trial for MMF(Cellcept) (placebo?) that I mix in an additional prescription of Mepacrine 3 times a week alongside the Plaquenil I am taking already. They suggested that if my Rhumatologist in Sussex wont do it then to get myself referred up there ( an hour by train) and they 'will sort me out'.

I have prempted my Rhumies reluctance and have made enquiries with my local GP to get me a referal should I need to. It would seem getting that sorted may not be clear cut. Looks like I will have to go back to her and make sure now.

So the appointment yesterday......
As seems to be the norm on a few occassions although my Rhumatologist is there on the day treating patients, I seem to get referred to his second in command next door. On each and every occassion his second in command had to go ' back next door to my Rhumatologist (original)' when he isnt sure of something and ask his opinion.

Yesterday was no exception. As soon as I suggested Mepacrine he told me 'we dont use Mepacrine' and despite me telling him that St Thomas has suggested as a way of helping me to get back to work, that I have very little consistancy to get me back in employment regarding the nature of my health, and that I was just 'coming out of a big set back and had been quite poorly' and I needed to explore other possibilities or options.

My appointments always fill me with this feeling Im having a to fight my corner as pleasantly as possible and that all the condradictions he makes fills me with a lack of confidence in his ability of what he dosnt know.
(It is very different if the tells you he dosnt know, that gives me confidence in his integrity and honesty etc).

After 15 minutes wait both Rhumatologist come back and my Rhumie sits across from me and this is what he said.

1. I have just been to see the Neurologist and your there is no concern with your kidneys:) .

2.The problem is this we cannot put you on Mepacrine as your bloodwork dosnt support us prescribing. Mepacrine isnt a drug prescribed as a treatment (licenced for Lupus?)(SLE?) .It is used in Dermatology for skin manifestations ie Discoid, but as you dont have discoid etc.

(I pulled back my hair and raised my chin with a smile and showed him the state of my skin, lumpy bumpy,red and blotchy and spotty) (He said that wasnt what it was for or something along those lines.)

3.MMF is too stonger a drug and clinically I you are not showing/presenting with systemic worsening bloodwork (this is the first instance I have heard the word systemic used and am making sense of it in terms of use towards myself in my head as he talks).. so the medical reasons for giving me Mepacrine or MMF are not there.

3. There are other things you can look at. Some people say 'kelp powder' helps and there are also anti depressants, not for depression but they help in some way with the nervous system. ( I checked out I heard correctly by using the word Iodine? and he confirmed he meant Iodine yes):eek:

4. The side effects are far outweigh the benefits, 'worsening bloodwork' , 'liver function' and 'eye problems'..prescribing a drug that clinically is outside what my bloodwork shows is not viable re benefits for "fatigue" verses side effects.

( When I suggested that fatigue is in fact ambigious and that it is that I actually feel 'ill' and very' buggy' a lot of the time. I can feel fatigued sometimes but not necessarily ill. The F word just dosnt resonate with many does it so I thought it best left out of things , the word ill would give him more understanding of what I am defining)

5.He told me that my ESR is coming down and would take weeks to fluctuate/move therefore making it impossible for me to be ill between appointments and for it not to show up in my 3 monthly bloodwork.

6. ( when I said very gently that looking at lupus requires one to be able to think 'outside the box ' - if symptoms do not reflect bloodwork and still to be able to judge a patient based on symptoms, to distinguish depression or imaginary symptoms or in fact this disease in different and one needs to look at a patient from symptoms despite just bloodwork.)
He answered yes you have to see if there is a primary or a secondary reason.
( I told him that I am not depressed at that point).

7.He said a lot of people he put on(the?) a drug and they were not happy with the side effects and complained. He mimicked a complaining voice:rolleyes: .

8.( I asked him " what were my choices" ?).
He had to think hard before answering this one and looked a bit uncomfortable:rolleyes: .
a) MMF
b)Iodine & antidepressants
c)To just see if things get better with time
d) He talks to a Dermatologist about the possibility of Mepacrine.


(Eurika)

9.To be totally honest with you we dont have (enough?) or (correct?) medications to treat /keep lupus symptoms away........We do not understand the triggers and influences going on in someone whose bloodwork dosnt show conerns and there are possibly influences that science dosnt have the answer to just yet. etc..

:) :) :) :)

I am happy with number 9 as at least it is honest.

He is going to 'talk to a Dermatologist and let me know of the outcome in 4 weeks time.

Meanwhile Kelpppppppppppppppppppppppppppppppppp!!!!!!:eek:


:)
 

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Glad to hear there is apparently no reason to be concerned about your kidneys as I recall you and I have had similar issues recently. I should find out more in February about my status.

I have felt much like you - about feeling a need to go in "armed" to discuss your treatment options with your doctor. When I suggested Mepacrine a number of years ago it was just outright dismissed with essentially no reasons even provided. Depending on my kidney status, I will ask about it again with my new doctor. If kidneys are a problem for me, then I imagine I will go on another medication instead of Mepacrine.

I am quite shocked they feel that Mepacrine would be a bigger risk to your liver/body in terms of side effects though than MMF! I too would love to lift this fatigue... that and the joint/head pain are my biggest issues at the moment.

Let me know how things progress for you on the Mepacrine front ;)
 

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Discussion Starter · #3 ·
Hi Maia

Think the Dr meant was he couldnt justify with regards to my bloodwork putting me on either as the possible side effects of MMF or Mepacrine outweighed the possible benefits. Symptoms alone did not seem to be something he took on board.

I did ask if he thought they were far more risky than general medications which would carry some risk and he seemed to think they were.

I sat there thinking you are making decisions or at least telling me how it is but what about how I feel and my choices.
I need informed choices but I also need my symptoms to be seen despite my bloodwork.

Good luck with your kidney results:)

No doubt I will posting more about the Mepacrine.

Nicky
 

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Dear Nicky, I am on Mepacrine, prescribed by St. Thomas', it is a good drug and I have had no problems whatsoever.
x Lola
 

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Hi Nicky,
Well done for smiling sweetly and battling out with your rhuemy. i know you've had issues with him in the past.
It sounds like he's finally listening to you at last, even if the answers he's giving aren't quite what you want to hear.
I reckon he would be too obstinate to consult with Tommies for better information on the use of mepacrine which is a shame.
Wouldn't it be nice if all rheumies sang from the same hymnsheet:rolleyes:
I can perhaps understand him not wanting to step up to cellcept if you have no organ involvement but mepacrine seems reasonable from what i have read on the boards.
Oh well:sad:
Good luck with any further developments and let us know how you get on.
By the way, what do you mean by feeling 'buggy,' and why iodine, have you got thyroid problems too?
 

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Hello Nicky

You did a really good job attempting to advocate for yourself - well done.

This fellow sounds a complete wally, kelp for heaven's sake ! How fatuous can a doctor get. Now, if he had suggested Omega 3's that would be more in line with current theories such as they are. I am thinking of starting them myself mainly to see if they help my brain cognitive problems.

The Plaquenil/ Mepacrine combination isn't in general use but I don't know why not as it is an excellent choice for the sort of SLE where there is no sign of organ involvement. 'Systemic' lupus means basically when there is more involved than skin alone.

It is true that Mepacrine is not a licensed drug - my GP won't prescribe it for me I have to get it from the hospital pharmacy. I don't know what the side effects concerns might be. There are one or two extra ones I believe but they are so rare they are hardly mentioned, and it doesn't affect the eyes at all. The main harmless side effect is a risk of yellow skin but this is very individual.
In some people this is so obvious it far outweighs the benefits and they would rather go onto Methotrexate or Imuran for further disease control despite the greater risk of side effects from those. I have been taking it at 100mgs a day for years and you have to look very hard to see any yellowing. Even then it looks more like a very very slight tan.
Mepacrine is very well known for its energising effect.

I sometimes think St Thomas aren't all that well informed about the realities of getting referred to them out of area. I think I might write to the Cellcept trial doctor and explain the problem saying you are trying to get a referral but it seems very unlikely your local health trust will agree, as it would be your second referral from GP. Ask if she has any suggestions how you can proceed.

I am not sure where the idea of using Cellcept came from, but it would not normally be used unless there are signs of organ involvement or failure to respond to the more usual second- liners mentioned above.

The anti depressant might not be a bad idea since depression can be a symptom of lupus itself. Some doctors believe there can be a problem with serotonin for some people with lupus so the SSRI's can be very helpful. They could also help with sleep. Have they tested for fibromyalgia

Sorry, I forget if you have been checked for thyroid and anemia. Or antiphospholipids.

It seems to me that he was very negative and unhelpful. He mentions wanting to get you stable but doesn't propose any additional therapy. It is impossible to tell how improved a person could become with the right treatment. You are right about the bloodwork not telling the whole story and sometimes, none of the story.
Maybe he doesn't want to give you false hopes about working again but at least you could be having a shot at a better quality of life.

I thik you could make out a good case for getting a second referral, if your GP is helpful.

Hugs
Clare

PS Google (kelp) taking no notice of sites selling the stuff. See below which refers to USA and then see if you can find UK references.

http://www.sciencedaily.com/releases/2007/04/070406140955.htm
 

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Discussion Starter · #7 ·
Hi All

BigSis Spot on !.
I am due for a thyroid test, most symptoms have past now.
'Buggy' is a term for having a bug or a germ which makes one feel ill. If I had flu, I may refer to feeling flu (e?).
English slang for feeling infested with something:eek: :lol: .

LolaLola Thanks for that. It is very good to hear Mepracrine has given you no problems. Hope things are going to stay well for you.:)

Clarie
Yes exactly, how fatous!!. I wondered if he was an alchemist as well as a Dr but kept the thoughts to myself.

I can contact the trial doctor but held off re concerns about protocol etc.
As she is approachable and has been helpful I will give that a try as my next move. I will contact my GP just to make sure first.

Im really glad you mentioned the fibro thing. I had forgotten about that...the last time a year ago I mentioned 'it' he reacted bizarrely and I havnt bought it up again since.

The whole 'interview' was really strange. When he came in he didnt once ask me any questions. Therefore I never said anything to anybody about fatigue but he bought it up. Neither did I mention MMF and likewise he seemed to assume that I might be thinking of it(because I went on a trial perhaps?)

I did sit there wondering how on earth he can come to any conclusions or make any decisions concerning my quality of life ( apart from bloodwork) without actually asking me why I felt I needed something extra!.

I'm up and coming for a thyroid test.

I think you could be right with the fibro thing. Im keen to get that checked out.
I wish I had asked him what he thought about that at time:rolleyes:

Think anemia is/was ok. Antiphilosphoids were checked a year ago this month and were expressed with an INR 'Lupus weak Anticoagulant 1.3 = Positive.

As I was on no blood thinning medication at the time I could only think that they thought as I had supposedly begun my Plaqenil meds a week in that the test should be expressed as an INR. Who knows . I had not even taken the medication until after the test anyway.

The doctor threw his hands up in the air and dismissed the results. Even if there is no worry , Im never reassured by his reactions. There was never a 6 week followup test either.

The fibro is really food for thought.

Anyway Ive talked too much as ususal:)

Thankyou
NIcky
 

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I don't know if you see Dr. D'Cruz at Tommies but he will certainly feel all the appropriate Fibro spots and let you know if you have this too. (I do)
Thanks for your good wishes, I really can't stress enough that Mepacrine is good and very safe.
x Lola
 

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Hi Nicky,
I have been taking Mepacrine (Quinacrine, here in the US) for seven years or so and have not had any problems. It is not generally prescribed, true, but I have found it works quickly and effectively.

Clare hit it dead on, i think it is time for a new referral, hopefully to a doctor who will address your concerns instead of pushing them under the rug...and running next door to get the broom! :eek:

Good luck,
Sharon
 

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Nicky,

How can a doctor that rarely sees you and didn't check you physically have any idea about what is appropriate treatment. For those of us with little bloodwork to guide our rheumy's it is necessary that they check us physically and take our reports of problems in making decisions.

I know that it occurs in every country but I still don't comprehend being under a specific doctors care but not seeing that doctor or seeing that doctor only after their minions have checked us out. I have been fortunate to always see the same doctor as long as I am a patient of that practice.

I think your thought of contacting the research doctor if you strike out with your GP is an excellent one. I also agree with pursuing if Fibro is also a part of your health issues. I have fibro with my systemic stuff and take both a trycyclic anti-depressant and an anti-seizure medication to keep it under control.

Take care,
Karen
 

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Nicky,
I can't help you because I have not a clue about mepacrine. I had to post because I am just sick of these drs. who went to medical school and who get paid the big bucks, yet we have to all the work for them. Should we really have to work so hard to feel good?

Clare was right-you handled yourself so very well, but it is so very sad that you have to go into your appointments, armed and loaded ready for battle:grrr:


I am beginning to think finding a fab rheumy is like finding a needle in a haystack. I know since my original one left to go private practice-I have not found anyone to fill his shoes. I wish I could afford to go private, but it is very pricey.
I agree with the others about the fibro too.
Keep up the good work and I hope he gets a clue real soon.


Hugs,
Becca
 

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Discussion Starter · #12 ·
Oh Yay, Oh Yay, Oh Yay !

I finally have been prescribed Mepacrine:)

Having had my Rhumie appt last Thursday I have had to wait for the hospital to 'order it in'. Five visits since Thursday and today a sporadic 3 hour wait at the hospital pharmacy , I have been given 1 month of what will be a 4 month prescription trial period to see how I get on with the drug..


The previous reluctance of my consultant to prescribe it in the first place , then his agreement to at least consult a dermatologist and come back to me in a couple of months meant I have had to wait.

In fact I waited 4 months ( as he never replied to me) until my next appointment last Thursday.

I felt he had moved on a bit in his attitude. Before he at least agreed to not understanding why I felt unwell even when my bloodwork showed no indications for reasons to feel unwell.


He explained on this visit that the reason I dont feel well is that despite the Plaqenil 'dampening down symptoms' I still have cytokine reactions which are never totally supressed by treatment. This would account for me feeling ill.

When I said ' so does that mean that is why my ESR is generally low (ish) but I can still feel ill.

He said YES

Hallelujah :) Hallelujah :) Hallelujah :) By George he gets it!! :thumbs:


I think he has been actually 'talking to that other consultant and is finally grasping the lupus thang:p

The lovely nurse who always sits in on the appointment laughed as I sneaked her a sneaky wink after asking him 'exactly how yellow ' would I go if this was a side effect.

I really feel I have had to fight my corner a bit over getting this medicine mixed in with my current ( Plaquenil and now Mepacrine).
The whole idea is to improve or at least try to improve my quality of life.

It is a strange affair to have a doctor making decisions about prescribing without really trying to get to grips in terms of benefit ,improvement verses side effects without ever really trying to talk to 'ME'. Mostly I found he talked through me...


Oh well...now all I have to wonder is the daily dose should be 3 times a week according to St Thomas, maybe that will be a future event.
Im really pleased and a bit nervous.

Sorry such a ramble but Ive not felt good over the weekend and I find it harder to put thoughts to cyber paper ,,,,


Ok ta ta for now.

Nicky
 

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Well done Nicky! Wow what a battle!

Katharine
 

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This is great news Nicky and kudos to you for continuining to fight. :foryou:

Maintaining good health and treating life long conditions shouldn't be a constant uphill battle but for many of us it is. It is physically and mentally exhausting and just adds to our health problems. I don't know where I'd be today without this site and the knowledge I've gained.

I really hope you see the benefits Nicky - keep us posted.

Lots'a'luv, :hug:

Pam xxx
 

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Hi- I am on mepacrine as I can't take plaquenil. I went a bit yellow when I upped from three to four tablets a week, so back on three. My armpits are a little yellow to be honest but noone but my partner sees those :lol:

I have been on it for nearly a year now - although the effects are not as good as the ones I got on steroids it has helped me keep off prednisilone for a year.

I really hope it works for you, it gave me more energy but did not sort out the pain side of things. But every little helps. :)

Good luck, and well done for fighting your corner.
Sar
 

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Well done Nicky for that phenomenal persistance.

Did he say how much Mepacrine to take ? I guess you can tell from how much you have been prescribed. I hear that St Tom's prescribes 3 x a week when it's added to Plaquenil.
I've been taking 100mgs a day for about ten years now with no perceptible yellowing only if you look very closely under certain lights and know what you are looking for. It seems to be very individual. Sweat and wee are rather spectacular yellow though - and staining.

I hope it helps you as much as it helps me with skin energy and joints
:)

Clare
 
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