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)
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 .
8.( I asked him " what were my choices" ?).
He had to think hard before answering this one and looked a bit uncomfortable .
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!!!!!!
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)
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
.8.( I asked him " what were my choices" ?).
He had to think hard before answering this one and looked a bit uncomfortable
.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!!!!!!
