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Thoughts on tapering to little of an amount


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I have held and tapered super slowly.  I can't tell that holding helps much and as I'm slowly tapering I seem to feel worse.

Are there any thoughts on tapering to little of an amount?

I reduce .002mg in 3 days then hold for 10.

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No idea Diane?

 

I just taper as much as I can and then hold when necessary!

 

Some people have to go slow.

 

It all makes no sense to me!

 

I hope someone is able to help more.

 

Hugs.

 

Winnie

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I still contend that holding does not work for everyone, and I am one of those people. I spent all last summer between about 5 and 5.5% every 14 days cutting daily, and it was awful. In August, I started cutting linearly and settled on about 8%/14. I actually did better. Some of my symptoms actually went away, and I made a lot of downward progress. Now I know this seems counterintuitive with everything we've learned on the boards, but it's worth trying periodically, because our bodies sometimes can handle more at some point in the taper. It does happen. Your body may be telling you, via increased sxs, that you're cutting too slow. If I were you, I would at least try a small increase and see what happens. If it isn't helpful, it at least answers that question, but like you said, holding does not seem to help you. You may also consider cutting daily or every other day. I hope things get better for you, D.
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Thank you J.  You made a lot of good points.  The only way I will know is to try.  I have so much anxiety and fear but who doesn't on this horrific journey.

I hope you seeing improvement.

Hugs

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I still contend that holding does not work for everyone, and I am one of those people. I spent all last summer between about 5 and 5.5% every 14 days cutting daily, and it was awful. In August, I started cutting linearly and settled on about 8%/14. I actually did better. Some of my symptoms actually went away, and I made a lot of downward progress. Now I know this seems counterintuitive with everything we've learned on the boards, but it's worth trying periodically, because our bodies sometimes can handle more at some point in the taper. It does happen. Your body may be telling you, via increased sxs, that you're cutting too slow. If I were you, I would at least try a small increase and see what happens. If it isn't helpful, it at least answers that question, but like you said, holding does not seem to help you. You may also consider cutting daily or every other day. I hope things get better for you, D.

 

How serious were your symptoms? Were any of them in your muscles, face or eyes?

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Think HfH has such great point that needs repeating ….. we have to test the waters in different ways along this journey. Just because we could or couldn’t manage one option a year ago or 6mo, 3mo ago, doesn’t mean we stay the same. Our brain shifts thru this in various ways. Someone who could handle cut and hold method initially, mind find they later need to do micro taper, or the other way around. someone else who had to slow down might could go a little faster later on or the other way around.

 

Testing the waters safely (not a drastic test), can give us info to help us thru this so being flexible in approach helps.

 

On my journey, I could do cut and hold higher up then it wrecked me (a 3% cut and hold brought on aka terribly)…. Went to micro taper and managed 12-18% drops thereafter each month until I hit a wall and had to hold for a bit. I then slowed to 5%, made switch to compound liquid. I thought I had made mistake with liquid and was ready to go back to tablets, but stuck it out a couple months and started settling to liquid. Then made decision I wanted to go linear and not % based bc at lower doses the small % would drag out forever….. so at .15mg started dropping .01mg a month (micro taper).

As I’ve gotten lower from last summer, % drop has been slowly increasing. This month I’ve dropped 16% (what .01mg drop at this dose equates to). I could NOT have made a 16% drop over a month last year!!! 

I try not to think about the % much so it doesn’t get in my head, and just stay on path of .01mg a month snd it’s working for me. Things have gotten better and I thought for sure the lower I went I’d get worse. Just illustrating how what each of us can tolerate can change over the course of this journey, so it’s ok to test waters every so often to see if an approach change might benefit you.

 

Hugs everyone!!

 

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Think HfH has such great point that needs repeating ….. we have to test the waters in different ways along this journey. Just because we could or couldn’t manage one option a year ago or 6mo, 3mo ago, doesn’t mean we stay the same. Our brain shifts thru this in various ways. Someone who could handle cut and hold method initially, mind find they later need to do micro taper, or the other way around. someone else who had to slow down might could go a little faster later on or the other way around.

 

Testing the waters safely (not a drastic test), can give us info to help us thru this so being flexible in approach helps.

 

On my journey, I could do cut and hold higher up then it wrecked me (a 3% cut and hold brought on aka terribly)…. Went to micro taper and managed 12-18% drops thereafter each month until I hit a wall and had to hold for a bit. I then slowed to 5%, made switch to compound liquid. I thought I had made mistake with liquid and was ready to go back to tablets, but stuck it out a couple months and started settling to liquid. Then made decision I wanted to go linear and not % based bc at lower doses the small % would drag out forever….. so at .15mg started dropping .01mg a month (micro taper).

As I’ve gotten lower from last summer, % drop has been slowly increasing. This month I’ve dropped 16% (what .01mg drop at this dose equates to). I could NOT have made a 16% drop over a month last year!!! 

I try not to think about the % much so it doesn’t get in my head, and just stay on path of .01mg a month snd it’s working for me. Things have gotten better and I thought for sure the lower I went I’d get worse. Just illustrating how what each of us can tolerate can change over the course of this journey, so it’s ok to test waters every so often to see if an approach change might benefit you.

 

Hugs everyone!!

 

All very good points. Thank you. Can you explain how you do a micro taper with liquid? How do you do the math for that and get the right syringe and such.

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Hi Rebecca,

I have a spreadsheet that has mL to mg equivalents that my compound pharmacist gave me (and I also double checked ;)). I know that I want to go down .01mg over a month to fit speed best for me at this point;  for example…

For my formulation of 10mL= 0.25mg K (everyone’s is different so numbers will not be what mine show)-

 

3.0mL = .075mg K (start of month)

2.6mL = .065mg K (End of month)

 

There is .4mL difference between start of month and end of month so I drop .1mL each week splitting the week in .05mL. So 2.95mL for three days, 2.90mL for four days, 2.85mL for three days, 2.8mL for four days, and so on and I get to 2.6mL in 30 days.

 

My compound pharmacist sent various syringe sizes so I could be precise so a pharmacy can give you these. Medisca precise dose dispenser is what they are called and I have size ranges for up to 5mL I one syringe, 2.5mL in next size down, 1mL next step down, and tiniest syringe is .5mL (so the half Rick marks are .05mL). I’ve only used the larger 2 and done fine with them.

 

I wish I could attach pics with all of this but I don’t know how to do that so hope this makes sense! Please feel free to message me if you need to! All the best!!

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