Rabe: how to taper and adjust Viibryd while on Clonazepam

[Rabe]

@brassmonkey Could you connect me to your calculator?  I tried and got a new one?  Cant figure out how to work it and thought maybe have wrong link?

 

Yes I think they are....worse since going from all .1's to the .2 and .7.  

 

But empty gel capsules should get here today and a spoon and then I guess I am set except for the doctor to order some pills cause probably should not use the compounded ones though I have quite few left?  Easier and better (more uniform) to just switch?  Thank you much...know your shoulder hurting.

Never sure who to ask....take care.

 

 

[Rabe]

@brassmonkey gel caps and spoon arrived...whoa!...the bag of capsules looked so small in the picture...BIG bag and BIG capsules!!!  WOW! 

 

 

[Rosetta]

Hi Rabe

[Rabe]

@brassmonkey Brassmonkey I have some capsules and a spoon.  I have quite a few Clonazepam capsules compounded but not many of the Viibryd left.   If we can use either or both great, if it it is better to not thats ok too...they were expensive but thats not important related to a smoother taper.

When you say the variation can be 3%...this is a dumb question...but what does that mean?  3% of the medicine, the filler, both?  And how do you know how much a variance there is? I tried to read about it online after you said that but it was not clear it seemed.  I suspected that they would take a variance and divide by two because of the two ingredients..though there may be more of the filler in one than another and more of the med in one that another so that doesnt make sense either.  

Is the 3% an allowance in the medicine and how do you determine that by the weight?  I know you had said to get, I think, the weight of the filler to use compounded.

Is that in general the filler weight or the weight of it in each capsule.  Sorry...this is a confusing way to do things isn't it.  I could call and get that.

Thank you.  

 

 

 

 

[Rabe]

@brassmonkey interestingly the clonazepam tablets I weighed were from .168 to .171.....better!!!! Viibryd .096 to .101, also better!  

So if you would let me know if can use the compounded or not.  Otherwise will need to text doctor and get tablets so can one way or

another get on more stable dose and then start tapering.  Thank you for everything brassmonkey.  

I dont understand how the compounded can have such a wider range...

 

 

[neroli]

Hello Rabe

 

Thanks for your message on Rosetta's thread.  SI is painful, emotionally painful but it's like a dagger in my guts.  It's when I look at life and how difficult it is to manage now, with difficulties getting off the drugs and how long it could take, meanwhile dealing with legs that seem to get more leaden and now with added muscle aches and tightening, and the future looks darker than the now. Especially with age creeping on. I am watching videos about mindfulness and living with chronic illness and pain to give me some hope that I can bear all this.  One of my favourites is: https://www.youtube.com/watch?v=N10_dcIZp2k&t=246s .  I knew this woman many years ago and I am amazed that she has lived well through her injuries.

 

RE. the piano - I too struggle with being interested in anything, so it is a gamble about the piano but I have committed to not beating myself up if I don't get round to playing it much.  I've done about 15-20 mins this weekend.  I will try to do a little when I can get myself to just go and sit there for a while.

 

I knit - and have been knitting baby clothes for charities that provide clothes for newborns.  That seems to be what I can get into the most.  And in the evening I can watch Netflix which is a change from a year ago where I could only bear to watch Buddhist videos.

 

Gosh I hope you are getting to grips with the mediations you're trying to work out and that your reductions become more manageable.  I'm about to updose the Nortriptyline by 2.5mg, I have been getting more anxiety, insomnia and I think the legs have got wobblier.  

 

Thinking of you.

 

Oh and we're getting into hotter weather - that too will affect me...

 

Neroli 💜

[Rosetta]

((((Neroli))))

[brassmonkey]

During the process of manufacturing anything it is practically impossible to get all of the measurements exact.  The closer to exact you try to get the more time it takes because of the care required to do it. This takes great skill and a lot of time and makes things very expensive.  So early on in the industrial revolution they came up with the concept of "allowable variation" which is referred to as "tolerance".  Meaning that something could so much off, but still be considered as good.  The FDA has done many studies over the years and has found that among the reputable drug companies that variation works out to be about 3% of the active ingredient or the stated strength of the medication.  That 3% would apply to each component of the tablet, the active ingredient, the fillers the buffers, the time release coating etc.  Considering that they make these pills at a rate of several thousand a minute that's not bad.

 

The general consumer has no way of measuring the variation in the strength of a tablet.  That takes a lot of very fancy lab equipment and expensive machines.  They can, however, measure the difference in the weight of the tablets and get a general idea of how accurate they are. The tablets you weighted work out to a variation of 1.7% which is really good. The paxil tablets I used were 0.6%, which is extremely good.

 

For the compounded capsules you received to have the huge variations that you measured (from the weights you mentioned in your intro thread) tells me that the lab that produced them is not very good.  Any trained tech with reasonable equipment should be able to produce capsules that fall with in the 3% allowable variation with very little trouble.  The variations you mentioned point to very sloppy work.  If it is an american lab they need to be investigated by the Federal Trade Commission for selling miss labeled products and short weights.  At the very least they need reported to the the insurance companies that deal with them.

 

As for using the compounded capsules, the contents are very suspect and it would probably be best not to use them.  Maybe by working with the insurance company and the lab you can get them replaced with something better.

 

Hope this helps.

 

Brassmonkey

[Rabe]

@brassmonkey Thank you for all that.  Ive talked to them twice and they have made it sound like I'm exaggerating.  So I just back off and think that is true...but I know it is not.  My body lets me know and I am truly grateful for your affirming that.  It is hard for me to continue taking the capsules knowing the wide variations.  When I put the low and high weights into a % calculator and saw the % difference I was stunned....can weight difference correlate to a dose difference?  If so 20%, 30% and more is incredible!!!  I dont know which of the capsules to take.   I didnt know if the weight difference mattered at all because the lab seemed not to care so I thought I was over reacting.  

Thank you for all the information,...I am so so grateful to know that I am not.  

Perhaps the good thing is that it makes me actually want to go back to the pills and weigh, hopefully get better stabilized, and get on with a taper that will too hopefully be 'better'. 

I will call them again Monday and try to get some other capsules.  The Viibryd actually was the best of the 3...unfortunately the .7 Clonazepam was the worst which explains a lot.  

I will need the Viibryd soon so I either weigh soon or try for more capsules.  I didnt want to have to be weighing three meds but may have to.  Not sure how to move forward exactly.  

I posted some of this in hopes that if others are having similar issues that perhaps they can also look into things as needed.  I know Carmie has had difficulties since going compounded as well.  Thank you again!!!!

[Rosetta]

Acting as if you are overreacting is a way of getting you to back down.  Do not back down.  You paid for those capsules, right? I think you have every right to expect the quality/ variance to be within 3%.  I think I would ask for my money back and give them the capsules back.  Making your own is all you really can do at this point.  When you are taking such a tiny amount the variance should be something you can control.  I have a feeling you will do a better job than the tech at that pharmacy even if you make mistakes.

[Rabe]

@Rosetta Thank you Rosetta...means a lot.  IDK...I do need to taper...know that.  I just am not reacting well to the CLonazepam and its not getting lots better.  Think it is and then its not...but maybe thats related to the varying doses...or when I take it...IDK.

When I talked to the pharmacist Friday he said to send the pills back...I cant get there because of the anxiety.  I cant send them all back obviously but have been trying to take the same area weight dose both times yesterday and today....hoping will help...not yet.  

Yes they were very expensive...3 months worth of all three.  This is all so crazy I know why I have such an affinity for Alice in Wonderland...I sure feel that way...crazier and crazier at this tea party!!!   Im going to call again tomorrow...we'll see.  I reweighed some of them today because I thought I must have been wrong..but not.

Maybe why I wake up some mornings feeling good and awake and others so so tired and/or anxious until later.  Then better and take it again and not good.  Hoping things settle.

Much love to you Rosetta! Thank you again. 💜 

[Rabe]

@Rosetta Do you know Rosetta...is the % difference in weight equal to the % difference in dose?

[ChessieCat]

On 11/2/2018 at 6:13 PM, Rabe said:

.7mg Clonazepam goes from .234 to .268 of capsule weight on scale

.2 of Cl goes from .213 to .271 weight on scale

9mg Viibryd goes from .221 to .256 on scale

 

Have you spoken directly with the compounding pharmacist and told them that you have physically weighed the capsules with a jewellers scale?  And you could provide the above information.

 

Good luck.

[Hibari]

14 hours ago, Rabe said:

@Rosetta Thank you Rosetta...means a lot.  IDK...I do need to taper...know that.  I just am not reacting well to the CLonazepam and its not getting lots better.  Think it is and then its not...but maybe thats related to the varying doses...or when I take it...IDK.

When I talked to the pharmacist Friday he said to send the pills back...I cant get there because of the anxiety.  I cant send them all back obviously but have been trying to take the same area weight dose both times yesterday and today....hoping will help...not yet.  

Yes they were very expensive...3 months worth of all three.  This is all so crazy I know why I have such an affinity for Alice in Wonderland...I sure feel that way...crazier and crazier at this tea party!!!   Im going to call again tomorrow...we'll see.  I reweighed some of them today because I thought I must have been wrong..but not.

Maybe why I wake up some mornings feeling good and awake and others so so tired and/or anxious until later.  Then better and take it again and not good.  Hoping things settle.

Much love to you Rosetta! Thank you again. 💜 

Hi Rabe,

I really get the frustration you have around the weight of these capsules.  

 

I now am weighing each individual tablet I take.  I tried chopping them up and putting then into a powder form in the summer but reacted in a hyper way

 I think I was already having an adverse reaction to the medication at that point.  I also think i reacted to the binders and fillers once things were chopped. 

 

All this to say, i empathize with getting the weight correct.  I spend about a 1/2 hour weighing pieces of my tablet. I check the weight numerous times and then after a certain point, I have to trust that I'm close enough.  

 

I also hear you about needing to taper your Clonezapam because you feel how it's not doing anything for you.  As you know that's what I am experiencing with my medication as well and have had to taper down.  It's odd not to be able to stabilize but I have to move forward towards healing.  

 

I acknowledge your determination and I am wishing you well. You can do it.  

 

H

 

 

[Rosetta]

22 hours ago, Rabe said:

@Rosetta Do you know Rosetta...is the % difference in weight equal to the % difference in dose?

 

I don't know.  I don't know how they make the contents of the capsules. (I do not believe the the pills contain almost pure active ingredient.  There are fillers and binding agents to make the pill stay together.)  Maybe the compounding pharmacy gets active ingredient in powder form?  Maybe they crush pills.  Maybe they turn a liquid into a powder?  

 

Regardless, they probably do not measure approximately the same amount of the active ingredient out for each capsule PRIOR to mixing it with the filler.  I suspect the reason for the filler is to make measuring the contents of the capsules easier.  Larger amounts of anything are easier to measure accurately.  So, they probably mix the filler into the medication, and then measure the contents of the capsules with a jeweler's scale.

 

IF they mix ALL the active ingredient with the filler prior to measuring (the likely scenario) and mix it well, approximately the same amount of active ingredient will go into each capsule.  If the capsules have the same amount of active ingredient in each one and then random amounts of filler are added you wouldn't have to worry, but that seems unlikely.  That would be a benign reason for the differing weights.  It's more likely that different weights mean differing amounts of active ingredient IF the capsules themselves are approximately the same weight.  Brassmonkey said that the weights of the empty capsules varies widely.  It's not made of medicine.  So, it doesn't matter.  

 

What concerns me is that 1) it's more logical that if there are differing amounts of matter inside each capsule then the active ingredient amounts differ and 2) you have never seen -- with the naked eye -- differing amounts of contents in different capsules before!  You didn't have the scale previously, but perhaps this has been an issue all along and you simply did not notice?

[Rabe]

@brassmonkeywould help me if you could please tell me the range of weight of capsules is reasonable to keep?  I will have to send most back but will have t keep some obviously to take until I can do the pills.  Thank you...I dont know how the weight and dose compare...sorry to bother.  Thank you for your help.

wrote this yesterday and forgot to send...ah mush mind!

[Rabe]

@ChessieCat Hi CC. I did talk to the head pharmacist who sounded annoyed and said the reports there say everything was within range.  He said to just send everything back and he would look at things.  Well I cant do that, obviously, because I have to have something to take.  I didnt call them today because I didnt want to deal with that ... had another issue and that was enough.  I will talk to them tomorrow.  At very least I will send the high and low capsules back with the ranges I measured and hope they can either replace them in better form or refund.

'Funny' thing is that the doctor said lets see how you do on a consistent dose when we started the compounding...hmmm..not so much.  Thank you for checking in ... truly appreciate it! 

[Rabe]

@Rosetta Thank you...I know that the Clonazepam is a powder they get....I think.  It is the blue 1mg tablet because I cant have the yellow dye...and others and other fillers, so they use brown rice.  I think they mix it all together and then fill the capsules.  When I first talked to the pharmacist who does mine she said perhaps less filler was used and thats why it looked like they were not filled.  Ive called three times on these.  The head pharmacist now says to send them back and hell look at them...but I have to keep some obviously.  I have about as much trust in this as I do in the doctors etc.  I thought these people do this because they want to help people like us...IDK.  

I think you were right about the 1mg capsules vs the .2 and .7...taking more of the capsules had an offsetting affect...I was much better on the 1mg and I now understand why.  

I think they have a formula...so much of the med and so much of the filler and then they fill the capsules but dont know.  Yes...I was better on the tablets for many reasons...stomach but mostly better consistency I think.  Lesson learned.  There really is not 'easier' way and no one is going to be as concerned about the doses as much as we who are tapering..though I have to say I THOUGHT this pharmacy would better understand.  

If I get capsules again I will get the 1mg until I can start with the pills...viibryd or clonazepam.  Ill have to get capsule for one I think...nit sure about measuring 3 different doses.  Seems like a lot...but IDK.

Thank you again Rosetta.  Hope your muscles are better today and that you got some sleep and had some good moments today.  Ill catch up on your thread. 💜

[Rabe]

@Hibari Hi Hibari...Im sorry you have had to deal with so much with these meds.  I too have had such a sensitive system that reacted to the meds when cut and crushed etc. as well as various dyes and fillers...and foods and all.  

I am finding the Clonazepam too be more paradoxical....well I feel pretty good in AM after get by 1030 anxiety...then when start taking meds and eating it is downhill from there.  Feel worse then better then worse then better.  Was doing pretty well til took .2 Clonazepam this evening.  Feeling pretty crummy now...HA, dizzy, nauseated...varies day to day.  

Think about you so often...a journey filled with obstacles....blessings to you Hibari.  Brave of you to just move forward even though not stable to get to a better place.  I feel I will have to do same...💜

[brassmonkey]

I used the high and low numbers you posted a while back to determine the average weight of each of your pills and then calculated 3% above and below that weight.

 

.7mg Clonazepam goes from .234 to .268 of capsule weight on scale      Average weight .251  acceptable range .244-.258

.2 of Cl goes from .213 to .271 weight on scale                                              Average weight  .244  acceptable range  .238-.251

9mg Viibryd goes from .221 to .256 on scale                                                  Average weight  .239  acceptable range  .231-.246

 

If the lab did a proper job of mixing the active ingredient and the filler then this should give a 3% variation in the strength of the dose, but there is no real way to tell.

[Hibari]

13 hours ago, Rabe said:

@Hibari Hi Hibari...Im sorry you have had to deal with so much with these meds.  I too have had such a sensitive system that reacted to the meds when cut and crushed etc. as well as various dyes and fillers...and foods and all.  

I am finding the Clonazepam too be more paradoxical....well I feel pretty good in AM after get by 1030 anxiety...then when start taking meds and eating it is downhill from there.  Feel worse then better then worse then better.  Was doing pretty well til took .2 Clonazepam this evening.  Feeling pretty crummy now...HA, dizzy, nauseated...varies day to day.  

Think about you so often...a journey filled with obstacles....blessings to you Hibari.  Brave of you to just move forward even though not stable to get to a better place.  I feel I will have to do same...💜

I totally get it. I take my meds and feel worse.  The longer I get away from my dose, the better I feel most if the time. There are rare occasions when taking my med at night makes me feel ok. 

Yes, I just took my morning meds and I feel crummy too, nausea and anxious.  

 

Having Alto confirm that I was having an adverse reaction to the med was such a relief. It has not made the journey easier but it did stop me from blaming myself for not doing things right because holding wasnt helping.  

 

I also get that the effort we put out to advocate for ourselves is exhausting.  You will make it Rabe and bless you too. 

[Rabe]

@brassmonkey  thank you...dont know how you know but grateful you do!

viibryd have left:  .219, .222, .223, .224, .226, .228, .229, .244, .245, .252, .253  Ive used the .23?s and .24?s, so have 2 left in the range 🙄

.2 and .7  Clonazepam:   I kept the ones in the range you gave and will send the others back.  will be interesting to see what they say.  Thank you brass monkey for your help!!!.....again!!!

[Rabe]

@brassmonkey well the head pharmacist called and said that he will check what I sent back but said that they can be in compliance up to a 10%😳 variance!  I told him that that was fine, but if that is the case I wouldn't be able to do that because of the sensitivity of my system.  He said that THEIR scales have no air flow, measure within I cant remember but really accurate, their capsules are supposedly standardized, and he went on and on...essentially he will look into it but they are right.  Hmmm...certainly seems to be the theme since I came here. 😡  Oh well, it is what it is and guess will be moving forward with a taper soon as have very few Viibryd capsules left.  I sent them tablet for others but if they are going to ok 1 10% variance then I'm not comfortable with that.  The other pharmacist had told me that they had to be within 3%...so IDK.  Wanted to thank you again for everything!  

[Rosetta]

Hugs, Rabe.  That is beyond ridiculous.

[Rabe]

@Rosetta  Thanks for stopping...frustrating.  Looking more into somehow getting home...or at least making plans to do so.  Hope you are doing ok today!💜

[Carmie]

6 hours ago, Rabe said:

@brassmonkey well the head pharmacist called and said that he will check what I sent back but said that they can be in compliance up to a 10%😳 variance!  I told him that that was fine, but if that is the case I wouldn't be able to do that because of the sensitivity of my system.  He said that THEIR scales have no air flow, measure within I cant remember but really accurate, their capsules are supposedly standardized, and he went on and on...essentially he will look into it but they are right.  Hmmm...certainly seems to be the theme since I came here. 😡  Oh well, it is what it is and guess will be moving forward with a taper soon as have very few Viibryd capsules left.  I sent them tablet for others but if they are going to ok 1 10% variance then I'm not comfortable with that.  The other pharmacist had told me that they had to be within 3%...so IDK.  Wanted to thank you again for everything!  

 

Hi Rabe, 

 

Just dropping by briefly, I’m struggling to read at the moment due to brain fog but 10% variance is ridiculous!!

 

I haven’t been able to read a lot of your recent thread but what are you going to do? Can u go back to your original tablets n then taper them? When I stabilise on these compounded capsules I’m going back to the original tablets. It’s been over two months since I changed to compounded n I haven’t stabilised as yet n it will take me many more months to get back to some kind of equilibrium when I go back to my tablets but I really do think that’s the best thing for me in the long run. 

 

If you go back to your original tablets you will go through lots of withdrawals too but do you think that will be better in the long run? I think brassmonkey is very wise in saying stay with the original tablets. 

 

Wishing you all all the best n sending hugs🤗💚

 

 

[Rabe]

@brassmonkeyIm thinking I just ought to start weighing my own...its either that or order new capsules of viibryd.  I have some tablets....going to get a jar and will crush some.  Then is it a matter of 'just' calibrating the scale, weighing .9mg of a 10mg tablet, putting it in a capsule and taking it?  

[Rabe]

@Carmie Hi Carmie....not a good day today...but way has been.  My plan is to go back to the tablets.  I wish the compounding could be more stable, but am seeing that is not the case.  I really had more problems when went from the .1mg capsules to .7 and .2 and I think it is as Rosetta said...probably related to taking more capsules made up for variances.  I could go back to those but they are hugely expensive cause of the amounts.  Just think, as you said, bras monkey is right...original tablets are best way to go.  Hoping going back to them wont be too bad.  When I went from the liquid to tablets it seemed to go okay though I was such a mess after that big taper that I'm not sure.  

Hang in there Carmie...such a road we are traveling!!  But at least we are traveling it with wonderful friends!!💜

[Carmie]

1 hour ago, Rabe said:

@Carmie Hi Carmie....not a good day today...but way has been.  My plan is to go back to the tablets.  I wish the compounding could be more stable, but am seeing that is not the case.  I really had more problems when went from the .1mg capsules to .7 and .2 and I think it is as Rosetta said...probably related to taking more capsules made up for variances.  I could go back to those but they are hugely expensive cause of the amounts.  Just think, as you said, bras monkey is right...original tablets are best way to go.  Hoping going back to them wont be too bad.  When I went from the liquid to tablets it seemed to go okay though I was such a mess after that big taper that I'm not sure.  

Hang in there Carmie...such a road we are traveling!!  But at least we are traveling it with wonderful friends!!💜

 

Hi Rabe, 

 

Im so glad you’re going back to the original tablets too. A much more reliable option, especially seeing the compounding pharmacy you have been going to is so off with their measurements.

 

If you change over to the tablets don’t get disheartened if it takes six months or more to stabilise. Just keep thinking it will be better in the long run to be back on the original tablets. Don’t put a time limit on it. Just take a day at a time n distract yourself when waves are bad. 

 

It may not take long at all for you to stabilise but in case it takes quite a while just remember down the track where you’re in the teeny tiny doses it’s better to have the accuracy of the original tablets. 

 

This journey is certainly all about taking each day as it comes n doing the best we can in that day. 

 

Sending hugs🤗

 

 

[Rabe]

On 10/28/2018 at 1:31 PM, brassmonkey said:

Once you've calculated the weight of the dose it doesn't matter what the weight of the original pill was as long as you use the same strength of pills each time.  You just measure out the correct amount of powder and you're set.

 

 

coating or no coating on the tablet or pill is not an issue? Just crush and measure?  I do find that the scale does weigh a bit different each time but its close

[Rabe]

@brassmonkey Im sorry!  I meant to add to the above...cause Carmie said I need to hold on the pills when changing from the compounded to the pills?  If so, do I change back to the pills for both Viibryd and Clonazepam doses or one at a time.  Too many pots on the fire...sorry to bother.  See him next week and would like to have all my ducks in a row...will take the scale and crushed pills and show him what I have learned and am doing.

[Rabe]

Bad day today after the viibryd...good morning.  Got worse around 330 or 4 and then better about 515...just in time for the CLonazepam.  But hoping that once can get on a more stable dose of things all around that perhaps things will get better.  Crying, anxious, pacing, head so hot, SI, not wanting to put anyone through this anymore...but managed to eat and force myself to get out just a bit and do some yoga.  That's ok for today.  Love to all!💜

[Rabe]

I am finding the hardest thing to be committing to anything because no two days are the same...

[Carmie]

24 minutes ago, Rabe said:

@brassmonkey Im sorry!  I meant to add to the above...cause Carmie said I need to hold on the pills when changing from the compounded to the pills?  If so, do I change back to the pills for both Viibryd and Clonazepam doses or one at a time.  Too many pots on the fire...sorry to bother.  See him next week and would like to have all my ducks in a row...will take the scale and crushed pills and show him what I have learned and am doing.

 

Hi Rabe, 

 

Thanks for your PM, I messaged you back. Yes, if you change over to the original tablets you will need to stay at the same dose for a while n stabilise before you can start to taper it. It’s been over two months since I changed to compounded capsules n I still haven’t stabilised yet, though I did accidentally take a double dose one night. 

 

Im not sure about changing both of your meds to the original tablets at the same time. Maybe it would be best to do one at a time n stabilise before you do the other?? Brassmonkey will know. All I know is that if you make too many changes in one go it can destabilise us even more.

 

Take care, you certainly have been through the ringer with your compounding capsules. 

 

Im really, really sorry you’ve been crying n are so anxious at the moment. This really is a crazy ride, though it will stop one of these days.

 

Sending lots of hugs🤗💚

 

 

[Rosetta]

Hugs, Rabe. I wish I could take all the anxiety and fear away.  Ideally, you would change one thing at a time, but if the pharmacy is so incompetent to think that 10% variance is ok then I would make my own capsules for both meds.  Brassmonkey or some other Mod might have a different take.  Carmie might be right.  I'm not sure, but a different dose every day doesn't sound likely to help you stabilize.  It seems to me that you were doing better before you tried the 0.2 and 0.7 capsules.  This pharmacy seems to be your problem.  I'm so sorry.

[Rabe]

@RosettaYou are really right Rosetta.  I was doing much better on the .1mg capsules of Clonazepam.  The Change to .2 and .7 was when things really went off the rails. And then this most recent round of all capsules which were an issue out of the chutes cause I called the pharmacist twice about them.  Oh well...thanks rosetta.  Hope your night was ok and that today holds some special moments.💜