positive news

suz1 38 posts May 08, 2009 2:19 AM	早晨好：  大约9年前，我确诊患重症肌无力， 一直是好好坏坏! 去年，也许更早点，我一直感觉到没有症状了。 我现在隔日20mg, 我的神经内科医生都离开我了，因为我恢复的这么好。但是最终减到15mg还是很慢的。. 唯一的一点是，我每天服用30mg小明，午后 15mg，睡前15mg。是不是我也可以开始减小明？and am I just taking it out of reassurance? I have reduced mestinon over the year I was on 60 30 30 30mg throughout the day but I am having trouble reducing again as I view mestinon as a bit of a crutch. I would appreciate anyone's experience on the reduction side as it is all quite new to me. I want to keep feeling like this but don't want to rock the boat.I am also working now(at times wondered if I ever would again) and feel if I reduce my mestinon it could rock the boat. I put the title of this post as positive news. I never thought I would get to this point e.g no symptoms. There is no reason for it to happen I have not changed anything. I had a thymectomy in 2000 and always hoped this may help and maybe eight/nine years later it is (I know research suggest within three years you should see improvement). Who knows? So hopefully although we have ups and downs if symptoms are bad at the moment you will feel better after reading this post. I know I mustn't get too carried away but wanted to share positive times as well as times when things haven't been going so well for me. Take care Suz1
Levitas 942 posts May 08, 2009 3:57 AM	Conventional wisdom is that you should change only one thing at a time. Your neurologist will want you to reduce prednisolone to avoid the long term possible consequences. When I was in the same situation as you I decided that I would cut right back on the Mestinon BEFORE reducing the pred. (How else would I know if my immunosuppressants were sufficient?). This approach worked for me. I remember this being discussed a year ago - "Whether we need it or not". I'll bring it forward. ---------- Levitas
alice 309 posts May 08, 2009 4:25 AM	Dear Suz, it is so nice to hear of someone that has such an improvment in her symptoms after so many years. it would have been great if we all knew why, but it seems that this illness, just does what it wants, when it wants, and doesn't really care too much about us. hope it keeps that way for many many years. as to your question about the mestinon-why don't you ask your neuro. my oppinion is that as it is basically a symptomatic medication and you take a pretty low dose any how, nothing could happen if you try stopping it for a few days, and then take it again if you feel that you need it.
Billy 2 posts May 15, 2009 4:56 AM	Hi Suz I am a newcomer to MG only 8 months however due to a mistake at the chemist I have been taking 4 X 15mg of mestinon a day and funnily enough it seemed to work fine, however on my last visit to the neuro he frweaked out and said I must take 4 x 30mg a day which I have been doing for the last 2 weeks, I do not feel anywhere near as good as previously so am going to go back to 4 X 15 I will let you know the result. I also take prednisolone now scaled down to only 10mg a day so I guess I am pretty lucky that on such small doses I am keeping fairly well. Billy
Levitas 949 posts May 15, 2009 5:05 AM	Billy, Welcome to the Forum. Neurologists come in different "flavours" and like myasthenics no two are alike. Yours seems to be something of a control freak. He could do, I think to listen more to his patient. What matters is what works for YOU, not what he believes to be the "correct" dose. Glad you are doing so well. ---------- Levitas Last Edited on 15-May-2009 5:06 AM
TinaM 68 posts May 15, 2009 3:51 PM	Levitas 我爱你的上个帖子,它让我笑了。. I've only met 3 or 4 Neurologists to date and I have to say you couldn't be more correct, life would be boring if we were all the same! Tina
suz1 39 posts May 16, 2009 3:44 AM	Hello, Thank you all for your posts and for the one Levitas brought forward. All very interesting and helpful. I have now reduced to 15mg one morning one mid afternoon and just before bed time. I feel fine and maybe I will not take the one before bed. However, it is the worry of how will I be when I wake up. It is such trial and error and maybe that is why we sometimes lack the confidence to listen to ourselves. My neurologist is very much of the try and reduce the mestinon it only masks symptoms field, but play about to a level that suits you (no more than 4x60 a day). That is of course personal to me and my symptoms and how he has seen me over the nine years with various medication levels. Thank you once again everyone (please do let us know how you get on Billy). Take care Suz

［此帖子已被 海蓝港湾 在 2009-5-19 11:16:33 编辑过］

［此帖子已被 海蓝港湾 在 2009-5-19 23:03:46 编辑过］

抱歉！看不懂。

好多英文，看都看不懂.

谢谢楼主提供的国外患者治疗过程。是啊不论国内国外目前小明，小强是MG对症治疗药物。我们还有中药来调整免疫异常和克服激素的不良反应。MG是可治愈的。

1、and am I just taking it out of reassurance?
I have reduced mestinon over the year I was on 60 30 30 30mg throughout the day but I am having trouble reducing again as I view mestinon as a bit of a crutch. I would appreciate anyone's experience on the reduction side as it is all quite new to me. I want to keep feeling like this but don't want to rock the boat.I am also working now(at times wondered if I ever would again) and feel if I reduce my mestinon it could rock the boat.
I put the title of this post as positive news. I never thought I would get to this point e.g no symptoms. There is no reason for it to happen I have not changed anything. I had a thymectomy in 2000 and always hoped this may help and maybe eight/nine years later it is (I know research suggest within three years you should see improvement). Who knows?
So hopefully although we have ups and downs if symptoms are bad at the moment you will feel better after reading this post. I know I mustn't get too carried away but wanted to share positive times as well as times when things haven't been going so well for me.
Take care
Suz1

早晨好： 

大约9年前，我确诊患重症肌无力， 一直是好好坏坏! 去年，也许更早点，我一直感觉到没有症状了。 我现在隔日20mg, 我的神经内科医生都离开我了，因为我恢复的这么好。但是最终减到15mg还是很慢的。.

唯一的一点是，我每天服用30mg小明，午后 15mg，睡前15mg。是不是我也可以开始减小明？(part of海蓝港湾译)

我可以放心使用吗？我减少使用小明已经两年多了，现在我一天的使用量分别为60 30 30但我现在在减少小明上遇到了困难，因爲我把小明看做是我的依靠。我将十分感激任何人在减少小明方面的经验，这对我来说都是全新的。我想要维持（目前）这种感觉但不想打破平衡。我现在有工作（有时怀疑我是否会再次发病），感觉如果我减少了小明的量会破坏这种平衡。
我把这份帖子的标题命名为积极的消息。我从未想过我能恢复到这种程度，例如：没有任何症状，没有任何诱因能导致发病，我没有改变任何事。我在2000年的时候进行了胸腺切除手术，总是希望这可以对病情有帮助，或许8、9年后它真的起作用了（我知道研究表明在三年之内，你便应该看到进步），谁知道呢？
即使我们的病起起伏伏，怀着如此的希望，是否目前病况正很差的你读了我的帖子后会感觉好一些。我知道我无法逃脱掉太多的包袱，但是想要分享积极的时光和当事情的发展对我来说并不乐观的时光一样。【我知道我无法逃掉太多的包袱，但是，如同我不太好的时刻想要分享（经验）一样，想要分享这好时刻的（经验） 】
保重
Suzl

2、Conventional wisdom is that you should change only one thing at a time.
Your neurologist will want you to reduce prednisolone to avoid the long term possible consequences.
When I was in the same situation as you I decided that I would cut right back on the Mestinon BEFORE reducing the pred. (How else would I know if my immunosuppressants were sufficient?).
This approach worked for me.
I remember this being discussed a year ago - "Whether we need it or not".
I'll bring it forward.
Levitas
传统的智慧是一心不能二用。
你的神经科医师要你减少[药]脱氢皮质(甾)醇(一种糖皮质激素亦称氢化波尼松)是为了避免长时间可能导致的后果。
如果我处于和你一样的情况下，我会选择立即返回使用小明在减少[药]脱氢皮质(甾)醇(一种糖皮质激素亦称氢化波尼松)之前。（我怎么能知道我的免疫抑制剂是否是充分的）
这方法对我管用。
我记得这在一年前曾今被讨论过—“我们是否需要它”。
我会尽快提出这个问题的。
Levitas

sairicai译：

一贯的做法是只调整一方面。

你的神经科医生想减少泼尼松的用量以避免长期服用可能带来的副作用。

我和你情况相同时我决定在减掉泼尼松之前重新使用小明。（怎么知道我的免疫抑制剂量足够呢？）
这个做法对我有益。
我记得这个问题一年前被讨论过——“我们是否需要它”

我会把它（帖子）顶上来。
Levitas

3、Dear Suz,
it is so nice to hear of someone that has such an improvment in her symptoms after so many years.
it would have been great if we all knew why, but it seems that this illness, just does what it wants, when it wants, and doesn't really care too much about us.
hope it keeps that way for many many years.
as to your question about the mestinon-why don't you ask your neuro.
my oppinion is that as it is basically a symptomatic medication and you take a pretty low dose any how, nothing could happen if you try stopping it for a few days, and then take it again if you feel that you need it.
亲爱的Suz，
听到有人这么多年后在症状上有如此大的改善，我十分高兴。如果我们都能知道为什么会这样该多好啊，但这病似乎知道它想要什么，什么时候要，并不会真的顾虑到我们太多。希望它能像现在这样维持很多年。
针对你关于小明的问题——为什么你不问你的神经科医师。
我的观点是这是症状的药物处理的基本方法，如果你尝试停掉几天是不会有任何事情的，但在这之后如果你觉得有需要的话再服用它。
Alice

4、Hi Suz
I am a newcomer to MG only 8 months however due to a mistake at the chemist I have been taking 4 X 15mg of mestinon a day and funnily enough it seemed to work fine, however on my last visit to the neuro he frweaked out and said I must take 4 x 30mg a day which I have been doing for the last 2 weeks, I do not feel anywhere near as good as previously so am going to go back to 4 X 15 I will let you know the result. I also take prednisolone now scaled down to only 10mg a day so I guess I am pretty lucky that on such small doses I am keeping fairly well.
Billy
你好Suz
我是MG的新患者（只有八个月），但由于药剂师的一个过失，我现在每天服用小明4 X 15mg，十分有趣的是它似乎很有用，但在我上次去看神经科医师时他 说我必须每天服用小明4 x 30mg，我上两个星期照着做了，但我并没有感觉比以前好，所以我又返回每天使用4 x 15mg。我会告诉你结果的。我现在也在用[药]脱氢皮质(甾)醇(一种糖皮质激素亦称氢化波尼松)，按比例减少到每天只需10mg，所以我想我是十分幸运的，可以在用这么少量药剂下保持身体状态良好。
Billy

5、Billy,
Welcome to the Forum.
Neurologists come in different "flavours" and like myasthenics no two are alike.
Yours seems to be something of a control freak. He could do, I think to listen more to his patient. What matters is what works for YOU, not what he believes to be the "correct" dose.
Glad you are doing so well.
Levitas
Last Edited on 15-May-2009 5:06 AM
Billy
欢迎来到论坛。
不同神经科医师适合不同“口味”（病人），就像肌无力患者，没有两个是一样的。
你的医师好像是个支配欲很强的人 。我认为他要做的是更多的去倾听他的病人的心声。因为重要的是什么对你起作用，而不是他相信是正确的剂量。
祝贺你做得这么好。
Levitas
最后编辑于2009年5月15日 早上5：06

6、Levitas
我爱你的上个帖子,它让我笑了。. I've only met 3 or 4 Neurologists to date and I have to say you couldn't be more correct, life would be boring if we were all the same!
Tina
Levitas
我爱你的上个帖子，它让我笑了。迄今为止我看过3或4神经科医师，我不得不承认你说的很正确，如果我们每个人都一样，那生活将是多么无趣啊！
Tina

7、Hello,
Thank you all for your posts and for the one Levitas brought forward. All very interesting and helpful. I have now reduced to 15mg one morning one mid afternoon and just before bed time. I feel fine and maybe I will not take the one before bed. However, it is the worry of how will I be when I wake up.
It is such trial and error and maybe that is why we sometimes lack the confidence to listen to ourselves. My neurologist is very much of the try and reduce the mestinon it only masks symptoms field, but play about to a level that suits you (no more than 4x60 a day). That is of course personal to me and my symptoms and how he has seen me over the nine years with various medication levels.
Thank you once again everyone (please do let us know how you get on Billy).
Take care
Suz
你好
谢谢你的邮件，特别是Levitas转给我的那一个。所有的都十分有趣并对我有帮助，我现在已经减少到每天早晨中午还有睡前各15mg。但是，我十分担心在我醒来后我会怎样。它如此的反复，这或许是为什么我们有时缺乏信心去倾听我们自己的原因吧，我的神经科医师尝试了很多并减少了小明的用量（每天不超过4x60）那当然是就我个人而言（我的症状和九年多他是如何用不同的医疗药物对我进行不同阶段的治疗的）。
再一次谢谢你们每一个人（请让我们知道你和Billy是如何相处的）
保重
Suz



感谢fay的 翻译。还没有最后定稿

［此帖子已被 sairicai 在 2009-8-27 11:43:50 编辑过］

1、and am I just taking it out of reassurance?
I have reduced mestinon over the year I was on 60 30 30 30mg throughout the day but I am having trouble reducing again as I view mestinon as a bit of a crutch. I would appreciate anyone's experience on the reduction side as it is all quite new to me. I want to keep feeling like this but don't want to rock the boat.I am also working now(at times wondered if I ever would again) and feel if I reduce my mestinon it could rock the boat.
I put the title of this post as positive news. I never thought I would get to this point e.g no symptoms. There is no reason for it to happen I have not changed anything. I had a thymectomy in 2000 and always hoped this may help and maybe eight/nine years later it is (I know research suggest within three years you should see improvement). Who knows?
So hopefully although we have ups and downs if symptoms are bad at the moment you will feel better after reading this post. I know I mustn't get too carried away but wanted to share positive times as well as times when things haven't been going so well for me.
Take care
Suz1

我可以放心使用吗？我减少使用小明已经两年多了，现在我一天的使用量分别为60 30 30但我现在在减少小明上遇到了困难，因爲我把小明看做是我的支撑。我将十分感激任何人在减少小明方面的经验，这对我来说都是全新的。我想要维持这种感觉但不想打破平衡。我现在有工作（有时怀疑我是否会再次发病），感觉如果我减少了小明的量会破坏这种平衡。
我把这份邮件的名字命名为积极的消息。我从未想过我能恢复到某种程度，例如：没有任何症状，没有任何原因能导致发病，我没有改变任何事。我在2000年的时候进行了胸腺切除手术，总是希望这可以对病情有帮助，或许8、9年后它真的起作用了（我知道研究表明在三年之内，你便应该看到进步），谁知道呢？
所以怀有希望即使我们的病沉浮不定，如果目前的症状正在恶化，相信在读了我的邮件后，你会感觉好一些。我知道我无法逃脱掉太多的包袱但只是想要分享积极的时光和当事情的发展对我来说并不乐观的时光一样。
保重
Suzl

2、Conventional wisdom is that you should change only one thing at a time.
Your neurologist will want you to reduce prednisolone to avoid the long term possible consequences.
When I was in the same situation as you I decided that I would cut right back on the Mestinon BEFORE reducing the pred. (How else would I know if my immunosuppressants were sufficient?).
This approach worked for me.
I remember this being discussed a year ago - "Whether we need it or not".
I'll bring it forward.
Levitas
传统的智慧是一心不能二用。
你的神经科医师要你减少[药]脱氢皮质(甾)醇(一种糖皮质激素亦称氢化波尼松)是为了避免长时间可能导致的后果。
如果我处于和你一样的情况下，我会选择立即返回使用小明在减少[药]脱氢皮质(甾)醇(一种糖皮质激素亦称氢化波尼松)之前。（我怎么能知道我的免疫抑制剂是否是充分的）
这方法对我管用。
我记得这在一年前曾今被讨论过—“我们是否需要它”。
我会尽快提出这个问题的。
Levitas

3、Dear Suz,
it is so nice to hear of someone that has such an improvment in her symptoms after so many years.
it would have been great if we all knew why, but it seems that this illness, just does what it wants, when it wants, and doesn't really care too much about us.
hope it keeps that way for many many years.
as to your question about the mestinon-why don't you ask your neuro.
my oppinion is that as it is basically a symptomatic medication and you take a pretty low dose any how, nothing could happen if you try stopping it for a few days, and then take it again if you feel that you need it.
亲爱的Suz，
听到有人这么多年后在症状上有如此大的改善，我十分高兴。如果我们都能知道为什么会这样该多好啊，但这病似乎知道它想要什么，什么时候要，并不会真的顾虑到我们太多。希望它能像现在这样维持很多年。
针对你关于小明的问题——为什么你不问你的神经科医师。
我的观点是这是症状的药物处理的基本方法，如果你尝试停掉几天是不会有任何事情的，但在这之后如果你觉得有需要的话再服用它。
Alice
4、Hi Suz
I am a newcomer to MG only 8 months however due to a mistake at the chemist I have been taking 4 X 15mg of mestinon a day and funnily enough it seemed to work fine, however on my last visit to the neuro he frweaked out and said I must take 4 x 30mg a day which I have been doing for the last 2 weeks, I do not feel anywhere near as good as previously so am going to go back to 4 X 15 I will let you know the result. I also take prednisolone now scaled down to only 10mg a day so I guess I am pretty lucky that on such small doses I am keeping fairly well.
Billy
你好Suz
我是MG的新患者（只有八个月），但由于药剂师的一个过失，我现在每天服用小明4 X 15mg，十分有趣的是它似乎很有用，但在我上次去看神经科医师时他 说我必须每天服用小明4 x 30mg，我上两个星期照着做了，但我并没有感觉比以前好，所以我又返回每天使用4 x 15mg。我会告诉你结果的。我现在也在用[药]脱氢皮质(甾)醇(一种糖皮质激素亦称氢化波尼松)，按比例减少到每天只需10mg，所以我想我是十分幸运的，可以在用这么少量药剂下保持身体状态良好。
Billy

5、Billy,
Welcome to the Forum.
Neurologists come in different "flavours" and like myasthenics no two are alike.
Yours seems to be something of a control freak. He could do, I think to listen more to his patient. What matters is what works for YOU, not what he believes to be the "correct" dose.
Glad you are doing so well.
Levitas
Last Edited on 15-May-2009 5:06 AM
Billy
欢迎来到论坛。
不同神经科医师适合不同“口味”（病人），就像肌无力患者，没有两个是一样的。
你的医师好像是个支配欲很强的人 。我认为他要做的是更多的去倾听他的病人的心声。因为重要的是什么对你起作用，而不是他相信是正确的剂量。
祝贺你做得这么好。
Levitas
最后编辑于2009年5月15日 早上5：06

6、Levitas
我爱你的上个帖子,它让我笑了。. I've only met 3 or 4 Neurologists to date and I have to say you couldn't be more correct, life would be boring if we were all the same!
Tina
Levitas
我爱你的上个帖子，它让我笑了。迄今为止我看过3或4神经科医师，我不得不承认你说的很正确，如果我们每个人都一样，那生活将是多么无趣啊！
Tina

7、Hello,
Thank you all for your posts and for the one Levitas brought forward. All very interesting and helpful. I have now reduced to 15mg one morning one mid afternoon and just before bed time. I feel fine and maybe I will not take the one before bed. However, it is the worry of how will I be when I wake up.
It is such trial and error and maybe that is why we sometimes lack the confidence to listen to ourselves. My neurologist is very much of the try and reduce the mestinon it only masks symptoms field, but play about to a level that suits you (no more than 4x60 a day). That is of course personal to me and my symptoms and how he has seen me over the nine years with various medication levels.
Thank you once again everyone (please do let us know how you get on Billy).
Take care
Suz
你好
谢谢你的邮件，特别是Levitas转给我的那一个。所有的都十分有趣并对我有帮助，我现在已经减少到每天早晨中午还有睡前各15mg。但是，我十分担心在我醒来后我会怎样。它如此的反复，这或许是为什么我们有时缺乏信心去倾听我们自己的原因吧，我的神经科医师尝试了很多并减少了小明的用量（每天不超过4x60）那当然是就我个人而言（我的症状和九年多他是如何用不同的医疗药物对我进行不同阶段的治疗的）。
再一次谢谢你们每一个人（请让我们知道你和Billy是如何相处的）
保重
Suz

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