[PMCPMC]

how long did it take and how was it decided that the new level was correct.

[Nicknerd]

Hey Patrick,

I was originally started at 60mgs in August. Then in September, there wasn't much improvement, so my neuro. increased it to 80mgs. Then it was noticed that my blood sugar was outta control. I was put back down to 60mgs after three weeks of being at 80mgs. Last time I saw my neuro at the end of November, I complained about crackling bones, continuing high blood sugar, etc.. She decreased it to 50mgs. Now I'm tapering down so that I'll eventually be at 50/0, but I'd rather be at 0/0.

Nicky

[PMCPMC]

Originally Posted by Nicknerd

Hey Patrick,

I was originally started at 60mgs in August. Then in September, there wasn't much improvement, so my neuro. increased it to 80mgs. Then it was noticed that my blood sugar was outta control. I was put back down to 60mgs after three weeks of being at 80mgs. Last time I saw my neuro at the end of November, I complained about crackling bones, continuing high blood sugar, etc.. She decreased it to 50mgs. Now I'm tapering down so that I'll eventually be at 50/0, but I'd rather be at 0/0.

Nicky

NICKEY how do they test for level as I went in two weeks from 20 to 60mg as a plan in hospital to move it to 60mg
why not 25,30,35,40.45.50.55.60by what real tests.
I have been on mestinon from 30 to 120 mg every four hours.
Now feel I am well overdosed on pred and neiro is talking about changing off it using another drug.
Did not feel confident he knows level by test confirmation.
Seeing family doctor on thursday and going to ask him how to write to neuro to make family doctor understand how he arrived at levels of drug or maybe he is a witch doctor.

[Nicknerd]

Hey Patrick,

Do you mean how do they determine what dosage of prednisone is the best for you? I think that as a rule (well, not really a 'rule' but common practice), prednisone is usually not prescribed to people who have only eye weakness (although they are reconsidering this as not to allow the MG to progress where it's affecting other muscle groups). When it is prescribed, it's for people with general MG, and it's usually a high dose (40mgs and up), just because MG might be more resistant to steroids, I'm thinking.

The tests that the neuro. does for me to see where I'm at strength-wise are

the holding your arms in front of you for 2 mins. test
Upward eyegaze test
Looking from side to side test
counting test
FVC test
holding legs up test
resistance test
drinking water test
Sticking tongue unto cheek test
holding chest up while laying down test
puffing up cheeks with air test
screaming yourself hoarse test (just kidding...lol)

I always fail the arm, counting (speech is impaired as soon as I arrive anyway), FVC, sticking tongue, holding chest up...I used to fail the puffing up cheeks one prior to starting steroids, but not anymore...yaye, I can fill my cheeks with air- what a milestone! lol (j/k)

The prednisone has mainly helped with my facial weakness..When I was at 80mgs, I noticed an improvement overall, but the side-effects of the 'roids were brutal (high blood sugar, heart palpitations, panic attacks, sweating, dizziness)...

they started me at a very high dose initially as to ensure faster action because I'm bulbar, and they wanted to avoid me having to be vented 'cause I think that's where they thought things were heading...It was started in the hospital so as to attend to any exacerbations...

What is it about the prednisone that's making you feel that you're at too high of a dose? What side-effects are you experiencing?

talk to you soon!
Nicky

[neutro]

Hi Patrick,
As Nicky just wrote, there is no fixed rule on how to start Pred except one: the maximum daily intake is 1 mg per kilogram of weight.
With that limit in mind and the severity of your sympoms, they may start
either high (about mid max dose, generally as an in-patient) to get rapid results and increase slowly (10 to 20 mg/d each month) until some results are obtained,
or low (10 mg/d) and increase rapidly (10 mg/d every 3 to 5 days) if no adverse effects is observed.
During the increase, my neuro monited me with a quantified series of simple tests see:
http://neurotalk.psychcentral.com/sh...825#post406825
and based on the results, the increase goes on or is stopped.
Later on, after about two months, the taper is started, 10 mg/d every two months to start, then every month, then 5 mg/d every month and ultimately 1 mg/d below 10 mg until 0 . Of course, any reoccurence of symptoms during the taper stops the process.
I went from 75 mg to 5 mg/d in 18 months with such a scheme…
Maurice.
PS: this is based on my experience and on the french way of handling MG, for instance, we don't use alternate day dosage…

[neutro]

Continued...
Two things I forgot to mention:
-during the increase period, blood works are run to check on any adverse effect of Pred on blood concentrations,
-Pred taper cannot be considered without prior intake of an immunosuppressor which would later supersedes Pred. Pred usually acts fast and immonosuppressors act slowly, that's why you start with Pred and end up with Cellcept, Imuran...
Maurice.

[BillF]

Originally Posted by PMCPMC

how long did it take and how was it decided that the new level was correct.

I was on and off at 60mg in 2007 then crashed big time and was for a short while up to 160mg. I started to reduce quicker than my docs wanted, but I was a balloon. By June 2008 I was down to zero, but not before I fractured three vertebrae. I lost 40 pounds by March and dropped another 40 or so by the end of 2008.

I had tried to taper off prednisone and crashed about three times since 2003, so this was my first successful taper. I think it worked because I was in remission; the combo of extremely high prednisone and plasmapherisis did it (maybe). I wouldn't want to go that route again, as no one thought I would make it.

Bill

[PMCPMC]

Originally Posted by Nicknerd

Hey Patrick,

Do you mean how do they determine what dosage of prednisone is the best for you? I think that as a rule (well, not really a 'rule' but common practice), prednisone is usually not prescribed to people who have only eye weakness (although they are reconsidering this as not to allow the MG to progress where it's affecting other muscle groups). When it is prescribed, it's for people with general MG, and it's usually a high dose (40mgs and up), just because MG might be more resistant to steroids, I'm thinking.

The tests that the neuro. does for me to see where I'm at strength-wise are

the holding your arms in front of you for 2 mins. test
Upward eyegaze test
Looking from side to side test
counting test
FVC test
holding legs up test
resistance test
drinking water test
Sticking tongue unto cheek test
holding chest up while laying down test
puffing up cheeks with air test
screaming yourself hoarse test (just kidding...lol)

I always fail the arm, counting (speech is impaired as soon as I arrive anyway), FVC, sticking tongue, holding chest up...I used to fail the puffing up cheeks one prior to starting steroids, but not anymore...yaye, I can fill my cheeks with air- what a milestone! lol (j/k)

The prednisone has mainly helped with my facial weakness..When I was at 80mgs, I noticed an improvement overall, but the side-effects of the 'roids were brutal (high blood sugar, heart palpitations, panic attacks, sweating, dizziness)...

they started me at a very high dose initially as to ensure faster action because I'm bulbar, and they wanted to avoid me having to be vented 'cause I think that's where they thought things were heading...It was started in the hospital so as to attend to any exacerbations...

What is it about the prednisone that's making you feel that you're at too high of a dose? What side-effects are you experiencing?

talk to you soon!
Nicky

now taking no mestinon now that pred has kicked in after 6/7 weeks .
had beenas highas 120mg of mestinon every three hours.
Still currently have weak neck muscle making it difficult for me to keep my head up.
also have tingling in my arms from shouder to hands but have passes all strength tests and the barrier of other tests people mention on this thread.
Believe what you say to neuro has bigger effect than I realised on his thinking .

[neutro]

Patrick, your approach to Mestinon seems curious to me: from 120 mg every 3 hrs to zero.…?
I'm currently in a relapse period and besides an increase of Pred, I went gradually from 4-60 mg/d (1 every 4 hrs) to 7-60 mg/d (8:30 am, 10 am, 11:30am, 2 pm, 4 pm, 6 pm, 8 pm) + one 180 mg Timespan at 11:30pm.
I came up with that schedule to avoid that neck muscle weakness and if I'm late for one intake, I'm feeling it quickly!
One other thing, what will you take to be able to taper Pred?
Maurice.

[PMCPMC]

Originally Posted by neutro

Continued...
Two things I forgot to mention:
-during the increase period, blood works are run to check on any adverse effect of Pred on blood concentrations,
-Pred taper cannot be considered without prior intake of an immunosuppressor which would later supersedes Pred. Pred usually acts fast and immonosuppressors act slowly, that's why you start with Pred and end up with Cellcept, Imuran...
Maurice.

matabilise it then the switch will start to imuron