Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I had my appointment with the specialist yesterday. He has started me on Imuran instead of the cellcept He feels this is the best med to start with. Any info on this would be welcomed!!
I saw My Neuro earlier this week, as TJ knows we have been talking about when to start a steriod spareing Imunossupresset, and then which one. Well I had a lonf discussion with my Neuro ( she is also a teaching orofessor at the Univarsity in town, and well recognised for her work in MG specifically -in Finland).
After evaulating my current status, her plan of action, is to rather see if we can get my Predinisone down to a maintenance level, or off it completely, she feels that I am doing well enough to see if we can get to the situation that I only need Mestinon. If in 3 months time I have not been able to reduce the Prednisone enough, or sumptoms are stronger, then we will look at Imuran.
I challenged her as to why Imuran, and she said that it is more widely acepted as a treatment for MG, and has been around for a long time. She undixcated that it is a bit of the ' Rather the devil you know than you dont'
Also felt that if there were complications etc, she and others, would pick it up quicker and also be able to treat it better.
So I am again on the slow taper down from my present 20mg Prednisone a day, so see if I can get to where I was 6 months ago (10 & 5mg on alternate days)
Thimnking that 18 moths ago I was on 60mg a day. I am hapyy to be on the downward trent.
Like my Neuru keeps reminding me: 'these are not vitemins - but we need you take them, so we need to see what is the lowest dose you need'
Long post I know, but I have been researching and pondering the choices in this topic for a while now, so know how it feels not to have the answers, hope this and all the other post shed some lght on the topic for someone out there
Rgds
Christo
I saw My Neuro earlier this week, as TJ knows we have been talking about when to start a steriod spareing Imunossupresset, and then which one. Well I had a lonf discussion with my Neuro ( she is also a teaching orofessor at the Univarsity in town, and well recognised for her work in MG specifically -in Finland).
After evaulating my current status, her plan of action, is to rather see if we can get my Predinisone down to a maintenance level, or off it completely, she feels that I am doing well enough to see if we can get to the situation that I only need Mestinon. If in 3 months time I have not been able to reduce the Prednisone enough, or sumptoms are stronger, then we will look at Imuran.
I challenged her as to why Imuran, and she said that it is more widely acepted as a treatment for MG, and has been around for a long time. She undixcated that it is a bit of the ' Rather the devil you know than you dont'
Also felt that if there were complications etc, she and others, would pick it up quicker and also be able to treat it better.
So I am again on the slow taper down from my present 20mg Prednisone a day, so see if I can get to where I was 6 months ago (10 & 5mg on alternate days)
Thimnking that 18 moths ago I was on 60mg a day. I am hapyy to be on the downward trent.
Like my Neuru keeps reminding me: 'these are not vitemins - but we need you take them, so we need to see what is the lowest dose you need'
Long post I know, but I have been researching and pondering the choices in this topic for a while now, so know how it feels not to have the answers, hope this and all the other post shed some lght on the topic for someone out there
Rgds
Christo
I saw My Neuro earlier this week, as TJ knows we have been talking about when to start a steriod spareing Imunossupresset, and then which one. Well I had a lonf discussion with my Neuro ( she is also a teaching orofessor at the Univarsity in town, and well recognised for her work in MG specifically -in Finland).
After evaulating my current status, her plan of action, is to rather see if we can get my Predinisone down to a maintenance level, or off it completely, she feels that I am doing well enough to see if we can get to the situation that I only need Mestinon. If in 3 months time I have not been able to reduce the Prednisone enough, or sumptoms are stronger, then we will look at Imuran.
I challenged her as to why Imuran, and she said that it is more widely acepted as a treatment for MG, and has been around for a long time. She undixcated that it is a bit of the ' Rather the devil you know than you dont'
Also felt that if there were complications etc, she and others, would pick it up quicker and also be able to treat it better.
So I am again on the slow taper down from my present 20mg Prednisone a day, so see if I can get to where I was 6 months ago (10 & 5mg on alternate days)
Thimnking that 18 moths ago I was on 60mg a day. I am hapyy to be on the downward trent.
Like my Neuru keeps reminding me: 'these are not vitemins - but we need you take them, so we need to see what is the lowest dose you need'
Long post I know, but I have been researching and pondering the choices in this topic for a while now, so know how it feels not to have the answers, hope this and all the other post shed some lght on the topic for someone out there
Rgds
Christo
I saw My Neuro earlier this week, as TJ knows we have been talking about when to start a steriod spareing Imunossupresset, and then which one. Well I had a lonf discussion with my Neuro ( she is also a teaching orofessor at the Univarsity in town, and well recognised for her work in MG specifically -in Finland).
After evaulating my current status, her plan of action, is to rather see if we can get my Predinisone down to a maintenance level, or off it completely, she feels that I am doing well enough to see if we can get to the situation that I only need Mestinon. If in 3 months time I have not been able to reduce the Prednisone enough, or sumptoms are stronger, then we will look at Imuran.
I challenged her as to why Imuran, and she said that it is more widely acepted as a treatment for MG, and has been around for a long time. She undixcated that it is a bit of the ' Rather the devil you know than you dont'
Also felt that if there were complications etc, she and others, would pick it up quicker and also be able to treat it better.
So I am again on the slow taper down from my present 20mg Prednisone a day, so see if I can get to where I was 6 months ago (10 & 5mg on alternate days)
Thimnking that 18 moths ago I was on 60mg a day. I am hapyy to be on the downward trent.
Like my Neuru keeps reminding me: 'these are not vitemins - but we need you take them, so we need to see what is the lowest dose you need'
Long post I know, but I have been researching and pondering the choices in this topic for a while now, so know how it feels not to have the answers, hope this and all the other post shed some lght on the topic for someone out there
Rgds
Christo
I saw My Neuro earlier this week, as TJ knows we have been talking about when to start a steriod spareing Imunossupresset, and then which one. Well I had a lonf discussion with my Neuro ( she is also a teaching orofessor at the Univarsity in town, and well recognised for her work in MG specifically -in Finland).
After evaulating my current status, her plan of action, is to rather see if we can get my Predinisone down to a maintenance level, or off it completely, she feels that I am doing well enough to see if we can get to the situation that I only need Mestinon. If in 3 months time I have not been able to reduce the Prednisone enough, or sumptoms are stronger, then we will look at Imuran.
I challenged her as to why Imuran, and she said that it is more widely acepted as a treatment for MG, and has been around for a long time. She undixcated that it is a bit of the ' Rather the devil you know than you dont'
Also felt that if there were complications etc, she and others, would pick it up quicker and also be able to treat it better.
So I am again on the slow taper down from my present 20mg Prednisone a day, so see if I can get to where I was 6 months ago (10 & 5mg on alternate days)
Thimnking that 18 moths ago I was on 60mg a day. I am hapyy to be on the downward trent.
Like my Neuru keeps reminding me: 'these are not vitemins - but we need you take them, so we need to see what is the lowest dose you need'
Long post I know, but I have been researching and pondering the choices in this topic for a while now, so know how it feels not to have the answers, hope this and all the other post shed some lght on the topic for someone out there
Rgds
Christo
I saw My Neuro earlier this week, as TJ knows we have been talking about when to start a steriod spareing Imunossupresset, and then which one. Well I had a lonf discussion with my Neuro ( she is also a teaching orofessor at the Univarsity in town, and well recognised for her work in MG specifically -in Finland).
After evaulating my current status, her plan of action, is to rather see if we can get my Predinisone down to a maintenance level, or off it completely, she feels that I am doing well enough to see if we can get to the situation that I only need Mestinon. If in 3 months time I have not been able to reduce the Prednisone enough, or sumptoms are stronger, then we will look at Imuran.
I challenged her as to why Imuran, and she said that it is more widely acepted as a treatment for MG, and has been around for a long time. She undixcated that it is a bit of the ' Rather the devil you know than you dont'
Also felt that if there were complications etc, she and others, would pick it up quicker and also be able to treat it better.
So I am again on the slow taper down from my present 20mg Prednisone a day, so see if I can get to where I was 6 months ago (10 & 5mg on alternate days)
Thimnking that 18 moths ago I was on 60mg a day. I am hapyy to be on the downward trent.
Like my Neuru keeps reminding me: 'these are not vitemins - but we need you take them, so we need to see what is the lowest dose you need'
Long post I know, but I have been researching and pondering the choices in this topic for a while now, so know how it feels not to have the answers, hope this and all the other post shed some lght on the topic for someone out there
Rgds
Christo
I saw My Neuro earlier this week, as TJ knows we have been talking about when to start a steriod spareing Imunossupresset, and then which one. Well I had a lonf discussion with my Neuro ( she is also a teaching orofessor at the Univarsity in town, and well recognised for her work in MG specifically -in Finland).
After evaulating my current status, her plan of action, is to rather see if we can get my Predinisone down to a maintenance level, or off it completely, she feels that I am doing well enough to see if we can get to the situation that I only need Mestinon. If in 3 months time I have not been able to reduce the Prednisone enough, or sumptoms are stronger, then we will look at Imuran.
I challenged her as to why Imuran, and she said that it is more widely acepted as a treatment for MG, and has been around for a long time. She undixcated that it is a bit of the ' Rather the devil you know than you dont'
Also felt that if there were complications etc, she and others, would pick it up quicker and also be able to treat it better.
So I am again on the slow taper down from my present 20mg Prednisone a day, so see if I can get to where I was 6 months ago (10 & 5mg on alternate days)
Thimnking that 18 moths ago I was on 60mg a day. I am hapyy to be on the downward trent.
Like my Neuru keeps reminding me: 'these are not vitemins - but we need you take them, so we need to see what is the lowest dose you need'
Long post I know, but I have been researching and pondering the choices in this topic for a while now, so know how it feels not to have the answers, hope this and all the other post shed some lght on the topic for someone out there
Rgds
Christo
christo