ADVICE PLEASE ON TAPERING COMPOUNDED CLONAZEPAM SUSPENSION

I am about to embark on the next to the last leg of my taper off three medications.  I first tapered off of 75mg. Stablon, an antidepressant not sold in this country. which I bought through a Canadian pharmacy.  That took two months.  I just completed a partial taper down to 15mg from 45mg. of Remeron.  My doctor wants me to stay at 15mg Remeron until I am completely through with Clonazepam which I am about to begin tapering with a compounded liquid suspension.  As you can tell from my signature I take .75mg. per day in three doses of .25mg oral dissolving tablets.  The suspension ratio will be .1mg/1 ml.  I plan on starting by just substituting the liquid for each of the wafers until I am sure I am tolerating it well.  Then my plan is to remove .01mg from the first dose on the first day then .01mg from the second dose on the second day and the same off the third dose on the third day.  In this way my doses will remain pretty equal.

My question is does anyone have experience they would be willing to share about tapering using this method.  I hope it is a slow enough taper so that discomfort can be somewhat minimized but I would love to hear first-hand experience.  Any suggestions would be greatly appreciated.

Thanks-

Debra

Hi,  I think you are on the right track, but there are a couple of things I have comments on.  First, your concentration of K liquid is a bit high for daily taper.  It needs to be more like .01mg/ml in order to make accurate cuts.

The second thing is your planned starting cut size is too big.  I'd suggest more like .001mg per day to start.  Try it for a few weeks and based on how you do you can then consider trying a bigger cut.

Hi SG57 -

Thanks for your reply and suggestions.  Just to clarify, I would have to take a total dose of 75ml. (the equivalent of .75mg.)  if the concentration were .01mg/ml?  Wouldn't that require a huge bottle of suspension to be made?  If the suspension were .1mg/ml and I have a 1ml. syringe with l00 markings then wouldn't each mark represent .001mg?  I arrived at the possibility of cutting .01mg per day as that is slightly more than 1% and I thought that was reasonable rate of micro-taper.  I'm sure that I wouldn't be able to do that every day for 75 days and that I would have to hold several times during the process.  At a taper of .001 per day it would take 750 days to complete.  I am terrified of this process and really want it to go as smoothly as possible.  I truly appreciate any advice you can give.

Debra

Hi Debra,

I tapered with a compounded liquid but started that when I was down to .125 total dose. I did cut and hold as you can see from my signature. The compounded liquid allows for small cuts and I liked that. I agree with SG57 that those cuts would be pretty big. I also u deed tabs and you're right, that to go in smaller increments would require a lot of liquid. I'm not sure how to get around this. I wonder about getting pills and dry cutting until you're a little lower. It's just an idea and certainly far from perfect.

Overall, I think your plan is very good. It's just a matter of managing that much liquid or finding an alternative until you're a little lower. I'd also add that a slow taper from .125, with moderate sideffects took me 6 months. I never thought it would take that long! But I followed my symptoms and added holds, decreased the size of my cuts as needed. People told me early on to stop counting the days and throw out the calendar. It's hard advice to follow but it's really the best approach.

Best of luck,

Peace2

Hi SG57 -

 

Thanks for your reply and suggestions.  Just to clarify, I would have to take a total dose of 75ml. (the equivalent of .75mg.)  if the concentration were .01mg/ml?  Wouldn't that require a huge bottle of suspension to be made?  If the suspension were .1mg/ml and I have a 1ml. syringe with l00 markings then wouldn't each mark represent .001mg?  I arrived at the possibility of cutting .01mg per day as that is slightly more than 1% and I thought that was reasonable rate of micro-taper.  I'm sure that I wouldn't be able to do that every day for 75 days and that I would have to hold several times during the process.  At a taper of .001 per day it would take 750 days to complete.  I am terrified of this process and really want it to go as smoothly as possible.  I truly appreciate any advice you can give.

 

Debra

Yes, I get the same numbers Debra.  If you are exacting with the syringe I think the .1mg/ml liquid could work.  It is just a bit difficult as a small syringe movement will result in larger dose variation.  But I think it could be made to work.

Another option to consider is to invest in a micropipette.  I think they cost about $80.  It is basically a "super syringe."  Does the same job, but with much greater ease and accuracy.  A P1000 pipette can break 1ml into more than 1000 accurate doses, so it would have no problem dividing a .1mg/ml solution into .0001mg cuts let alone .001mg.  And it doesn't wear out.

My suggestion to begin at .001mg is just a starting point to get your bearings.  I would expect you could eventually cut well beyond that, but we don't know that.  It is a good place to jump in to begin searching for your best daily cut.  I recommend searching from the bottom up rather than jumping in high and crashing.  You look for the highest cut that does not increase symptoms, then stay below it.  after all, your body is in charge.  You don't get to determine your cut rate, you only get to discover it.  Healing takes what it takes.

Hello-

I did begin my taper using compounded suspension (.1mg/ml) on 7/20 for the AM and PM dose but taking a pill for the afternoon dose which I file and weigh.  I cut .01mg per dose per day so I am now at 23mg. per dose.  I am now holding for a few days to see how this plays out.  You were right SG57, .01 per cut is too much to cut at one time.  When I start cutting again in a few days I am going to try half of that or .005 and see how that goes.  If that is still too much then I will consider buying the P1000 pipette so that I can make the smallest possible cuts.

I am feeling some discomfort, particularly in the morning i.e. stomach ache, nausea, generally unsettled feeling but nothing horrible yet.  I feel much better as the day progresses.  My total dose is now .69mg instead of .75mg so I am feeling somewhat encouraged that the numbers are going down.

Any other suggestions would be welcomed.

Debra

Glad that cutting by .010mg per day did not seem to hurt you too bad.  That is way too fast.  You may also find that .005mg is too much also.  My advise is not to try that one next, but rather try something closer to .001mg.  If you want to be a bit aggressive maybe go to .002mg or .0025mg, but .005mg is too much IMO.  You need to find your healing rate by searching from the bottom up.  It's likely in the range from .001-.005mg somewhere, but searching from the top down might be painful.

Also, just a reminder to keep your three doses near even all the way down.

Thanks for the wise advice SG57.  It might be difficult to cut by .001mg because it is so hard to see the tiny lines on the 1ml. syringe with 100 markings.  I guess if I am very careful I could try and hit that tiny mark.  If I cut the .001mg each day how many days should I give it before increasing?  I am taking three equal doses a day roughly eight hours apart (give or take a little) and not feeling any interdose problems.

I have looked into the P1000 micropipette but I have not yet decided  to go that route yet.  With the bottles of compound I have the syringe just fits right into the top, you turn the bottle upside down and draw out your dose.  I don't know if the pipette works the same way.  Have you used one?  If so, I would appreciate any details that would help me make up my mind re: purchase.

Thanks, again, for being so helpful.

Debra

I know what you mean about the lines.  That is what I meant a few posts ago when I said you might be able to make it work.  You would need to be exacting.  It may not matter because each day you drop a line so over time you are always "very close" to the right dose.  That error never increases so over time you will get the same cut rate.  I'm having a hard time explaining what I mean.

I would give each cut at least a two weeks trial period.  If okay then you could try a higher one.

I've never used a pipette, but I'm helping a friend and have become very familiar with the P1000. I'm impressed and if I were to taper again (perish the thought) I'd probably use one and not bother messing around with syringes.  There are lots of training videos on the web showing how pipettes are used.

Hi-

Are you saying that if I cut .001mg from my morning dose tomorrow I shouldn't cut any other doses for two weeks?  I just want to be clear about your suggestion.

I have watched some of the YouTube videos about the micropipette but I am a little confused as to the conversions since the pipette is in microliters.  Do you know what the conversion of .001 mg to microliters is on the pipette?

Thanks.

No.  Keep doses as even as possible.  Bring them down together.  I'm saying the total daily cut of .001mg.  If you take the cut out prior to splitting your doses you won't have to worry about which dose the cut came from.  Take the cut then split the remaining into your doses for the day.

You have a .1mg/ml liquid?  So each ml contains .1mg.  1ml =1000microliters, so your solution is .1mg/1000µl.  This means 1000µl contains .1mg.  So 100µl will contain .01mg.  And 10µl will contain .001mg.

Thank you SG57.  Since I am using a compounded suspension (not my own liquid mixture) and I pull each dose directly from the bottle, I can only cut from one dose at a time so I just keep track of every day's doses on a calendar.

If I understand you correctly, my .23 mg doses on a micropipette would be 2300microliters and if I took off .001mg my dose would be 2290microliters?  I want to make sure I have the conversions correct.

Debra

Ahh.  Gotcha.  You can only make cuts to individual doses.  And you're pulling to dose.  That's good.  No waste.  Well, the next best thing is to figure the cut and spread it among each dose.  Or you could alternate the cut from one to the next round robin style.  Either way will keep your doses even.

Yes, you've got it.  If your current dose is .23mg and your liquid is .1mg/ml then each dose would be 2.3ml which is 2300µl and reducing .001mg would be a dose of .229mg or 2290µl.

Thanks for the confirmation.  I think I am going to wait on the pipette and see what I can do with the 1ml./100 marking syringe.  Maybe I'll try a reduction of .002 per day but that will have to wait as I am still not well from my overzealous cutting last week (.06 mg in six days).  I am, however, going to stay at my total daily dose of .69 and just wait out the discomfort.

I have been doing "round robin" style of reducing.  Each day I remove an equal amount from either the AM, afternoon or PM dose so every three days all the doses are perfectly even.  It would drive me too crazy to make sure the day's reduction was spread evenly over that day's dose.

In your opinion, how long might it take until my body settles down from the cuts of last week.  I have now been holding steady at .69mg for three days and will continue to do so until I feel steady.  At that time, I will start reducing at a much slower pace, thanks to your suggestions.

I really appreciate your responsiveness.

Debra

The syringe would work I think.  With a .1mg/ml solution each tick line would be .001mg and you would be cutting two lines per day, so if you measure carefully I would think it would go okay.

It's very hard to say how long it might take for you to feel well enough to taper again.  The whole process is too subjective.

I am so interested in what you are doing..I recently triedthe compound amd got very ill. The bubbles in the syringe must have been quite a reduction...my gut hurt so bad I couldnt eat and my back began to hurt terribly but I never thought to reduce using the pills also..maybe I should have taken I dose at a time..good luck, I will try to make my own solution next..may I ask the brand of k you are on? I take Teva brand. I even switched to the teva pill before the same liquid...did you begin reductions as soon as you started the liquid..sorry so many questions but I need to get this moving again...I was on .75 daily also...did you updose to 1mg to start the liquid? I had a 5ml solution that equaled the .25....some said I should have updosed a little to compensate for the bubbles ....flower

Pleased feel free to message me....I am debbie also

Hi-

I will try to answer your questions.  First, what is the ratio of your compounded suspension because you gave two different numbers.  It sounds like it is 5ml to .25mg.  My compound is 1ml to .1mg.  The pills I am using are Teva but I'm not sure which brand they used for the suspension.  I switched over to two daily doses of the liquid (AM and PM), each .25mg, over three days and my afternoon dose is in pill form which I file and weigh on a jewelers' scale.  I then started to taper, did not updose, but I did get too ambitious last week and cut .01mg per dose per day.  In 6 days I lost .06mg and I am now really paying the price.  I wake up really sick every morning i.e. shaky, nauseous, headache, etc.  It is certainly because of how much and how quickly I tapered.  I am now at .23mg per dose (total daily dose = .69mg) and staying there until I feel better.  Once that happens I am considering not taking the liquid but just filing and weighing the pills for each of my three daily doses. Once I get down much lower in the daily dose I may then have another compounded suspension made which would be closer to the ratio you have.  I might even consider asking for .01mg per ml.

The way I deal with the bubbles is to put the syringe in the bottle, push the plunger all the way in and then out and then I do it a second time to draw my dose.  It seems that doing it this way pushes any bubbles out on the second push in.

I hope this has been helpful.

Debbie

Cutting the .06mg in 6 days really took its toll.  I was sick for the next five days after that and just held steady at the .69mg.  I then tried cutting .001 off one dose per day and did this for a few days.  I was able to do it with the compounded suspension and the l ml. syringe.  I feel, however, that the suspension is really having a negative affect on my stomach.  Within thirty minutes of taking it in the morning I am feeling really sick i.e. nauseous, no appetite, constantly roiled stomach, etc. even if I take a bit of food first.  Has anyone else had trouble tolerating the suspension?  I am seriously considering just taking all three doses per day in pill form instead of the two suspensions and one pill that I am currently doing.  I have a jewelers scale which  goes to .001mg which allows me to file and weigh the pills.  The smallest cuts I can make are .003mg (my current pill dose weighs .078 and is equivalent to .229mg. Filing it to .077 makes it .226mg).  I was thinking of reducing one dose by that amount (.003mg) for a few days and then moving on to the next dose to see how it goes.

Any info or opinions would be so appreciated.