I want to tell the following story with humor, but I’m really not a humorist. Just know the humor is not lost to me even though it was anything but funny when I was dealing with it.
I’ve been on .45 mg of Risperdal lately. That’s down from .75 mg when I started working with my new doc about three months ago. In addition to that I’ve cut down the Lamictal from 125 mg to 90 mg. As you all know I’m doing much, much better in spite of cutting down the meds extremely quickly. We did not start to taper meds immediately when I started working with her—what I’ve just said may not seem quick, but if you follow standard protocol as laid out by Breggin, for example, I’m moving extremely quickly. Remember, I’ve been on these meds for 20 years and going extremely slowly is in general very important. The difference here is that I’ve found an incredibly gifted physician who knows a whole lot more than anyone I’ve met about healing the body and so I’m moving a bit more quickly.
In any case a couple of days ago my doctor recommended that I cut the Risperdal an additional .01 mg every other day for a total of .05 mg in 6 days. As you might imagine, if you bother thinking about it, I have all sorts of equipment to allow for making minute tapers. I’ve been using a syringe without a needle to measure the liquid Risperdal. It’s a dual use syringe. One side has cubic centimeters and the other has milliliters. It’s intended to be used with a needle which I’ve removed. I’ve been using that instead of the syringe made for the Risperdal because it has much smaller increments and I believed it was easier to measure tiny amounts.
In any case I was supposed to be taking .45 ml as one milliliter is equal to one milligram.
Yesterday I asked my husband to help me make a mixture of the Risperdal liquid with water so that I could easily measure the tiny .01 mg amount. As we began figuring out the math involved in doing such I realized that I had been using the wrong side of the syringe—the cc side rather than the ml side. At first this led me to believe that I was actually taking .725 mg of Risperdal rather than the .45 mg.
As this slowly sunk in and my husband tried to reassure me and figure out what to do next I slowly had a panic rise inside of me. I had switched to liquid when I got to .75 mg with pills so what I was facing was the thought that I had actually switched to a higher dose and that after taking two months to make tapers I was actually now on approximately the same dose I had switched to when starting the liquid. I actually got hysterical.
I’ve been doing very well and I’m busy every day now and I go out and I feel good. But, alas, I still suffer from horrible PMS and yesterday my PMS symptoms had kicked in. The whole day had been difficult, though I was still very active and got a lot done I was irritable and feeling mildly helpless because I simply can’t figure out how to deal with the PMS. It gets extremely frustrating. I’m figuring it will probably have to wait until I’m off all meds as the meds mess with hormones along with all the rest of their bad effects.
Anyway, I had a rising panic in me. There are no words for what I was feeling, but slowly the realization that I was on a lot more Risperdal than I had thought sunk in. I felt as though I had been tricked in a cruel way. It was like a vampire was upon me or that I had just ingested a large quantity of poison. I worked so hard to get to this point and now I was back where I was three months ago. Considering I’ve been withdrawing from meds for 4 years and it feels like forever and that I have the unfortunate attitude that my life will begin once I’m off the drugs I was devestated. I balled like a baby. My husband held me and when I had done I asked him if I could scream. He left the room and I let out a huge scream. Just one but that felt better.
We called my doctor and she said not to worry that this is the sort of thing that it’s very easy to mess up on. She asked us to figure out exactly what I was taking in milligrams. Paul pulled out my multiple syringes and started working with water to determine what I was taking.
I’m not sure I can explain exactly what we discovered, but the syringe that comes with the Risperdal works differently than a syringe with a needle that I’ve been using. Syringes with needles create a bubble of air that when using a needle you shoot out and lose a bit of the drug. I haven’t been able to do this so I’ve been ignoring the bubble. This means I’ve actually been taking less than the .45 cc mark. But in addition to that when my husband started measuring the quantities with three different syringes I have it turns out that the one I was using wasn’t accurate and low and behold I”ve been taking .4 mg of Risperdal!!
All my hysteria was for not.
I see the humor in that, but I don’t know how to write with humor. I am, of course, greatly relieved. I have lost no ground and in fact gained a bit. But even if I had lost ground, the fact that I was so ill equipped to deal with what would have been a relatively small set back gives me pause. Again I have to visit the idea I so often talk about. Acceptance. It would have been okay had I messed up. Had I had to cut down to .4 mg again.
Sometimes I’m so delicate.
I asked my doc the other day about the PMS. Years ago when I was first treated nutritionally for PMS, before I got on my drug odyssey diet and nutrition cured me. But then I went down the road I’m still on and I lost all the gain I’d made on the psychiatric meds. My doc said the longest standing problems are usually the last to go. I’m on a diet and nutritional regime that should help my PMS, but chances are the meds have wreaked additional havoc on my hormones, adrenal system and all. I’ve had bad PMS since I was 16 years old. The PMS may very well pass as I continue my healing journey with this doc.
And if it does not, once off all the meds I will seek out traditional Chinese Medicine because I have several friends and acquaintances that have had great outcomes with hormonal issues with that modality. For now I’m stuck with feeling crappy for the next week and a half. At least I’m still up and about, driving and being productive.
It’s still a rocky journey, but I’m extremely optimistic. I don’t know if it shows when I write a post like this. I am getting better and better. It’s just I still get frustrated a lot. Acceptance. Acceptance. Acceptance.
Interesting re: Invega, it is the most pimped out drug from pharma reps now vs. good old Risperdal. Invega was coined “Son of Risperdal” by Cl psych I believe.
One day while in the pdoc office, here sat a pharam rep with big orange coffee mugs stuffed with Invega for the psychiatrists as pharma party gifts.
I asked him if he was there representing “the son of risperdal?” and he said yes, then I asked him for his business card and if he stored the samples in a proper storage temperature. He soon realized I was asking far too many questions that he probably never gets asked, and he just stopped talking, and was probably regretting I walked in!
So good luck I suppose for the new patients ending up on the newest metabolite of Risperdal!
Wow, Sloopy you sure have tons of information!
not ignoring, but not totally understanding either…my brain is still fried!
thanks for the info.
You are a good metabolizer and so say all of us! I bet lifestyle choices heavily influence metabolic function, and you always make sure to look after yourself.
I’m obviously no medic, but at a guess, the article is saying that risperidone, considered on its own, has a metabolic half-life of between 3 and 20 hours.
However, one of the metabolites which is produced by the breakdown of risperidone is 9-hydroxyrisperidone. And that is an “active metabolite” which achieves the key (psycho)therapeutic effect.
In fact, according to this 1999 paper, “the formation of 9-hydroxyrisperidone is the most important metabolic pathway of risperidone in human.”
I see that Janssen is now marketing 9-OH-risperidone as a drug in its own right – paliperidone (Invega).
So far as I understand this, to determine the relationship between the withdrawal effects of a drug and its elimination half-life, the “prodrug” (e.g. risperidone) and its active metabolites (e.g. 9-OH-risperidone) need to be considered together.
I suppose this is how rxlist.com arrives at a combined “overall mean elimination half life of about 20 hours” for risperidone and 9-OH-risperidone. This is a timescale that is “similar in extensive and poor metabolizers”.
In the case of Ivega, since the initial stage involved in risperidone metabolism has been eliminated, Invega will presumably have a shorter half-life than risperidone, and therefore its withdrawal is likely to be more difficult.
According to that MIND table of drugs, 20 hours seems to be a middle-of-the-road case.
Ignore all that at your pleasure!
from rxlist.com:
The apparent halflife of risperidone was 3 hours (CV=30%) in extensive metabolizers and 20 hours (CV=40%) in poor metabolizers. The apparent halflife of 9-hydroxyrisperidone was about 21 hours (CV=20%) in extensive metabolizers and 30 hours (CV=25%) in poor metabolizers. The pharmacokinetics of risperidone and 9-hydroxyrisperidone combined, after single and multiple doses, were similar in extensive and poor metabolizers, with an overall mean elimination half-life of about 20 hours.
NOW what does that mean…???
Am I an extesive metabolizer or a poor metabolizer?
I’ve heard about people having radical different metalbolic rates but 3 – 20 hours is crazy.
short half-lives always equal worse withdrawal!! I don’t even know what the half life of Risperdal is…I know I feel it at night when it’s time for my dose, though!
Hi Gianna!
Hope the scales suit you too!
I have found that they take a minute or so to warm up and stabilise. This is apparently normal. Compared to you, I’m a real rookie in all of this. In fact, I’ve hardly set out on this journey of withdrawal. So far, I’ve tapered by 40% since Christmas 2007, and that has been a real roller-coaster ride. Hopefully, with the aid of the scales, the rest of the withdrawal will be less traumatic.
I was looking again at that MIND table of drug half-lives, and I can understand now why I had such hard time getting off sulpiride a few years ago. I had only been on the drug six weeks, but the withdrawal reaction was horrible.
It seems that sulpiride has the shortest half-life (6-8 hours) of all the neuroleptics listed in that table. Apparently, it is a neuroleptic used more commonly in Europe. I remember the shrink telling me how marvellous it was at the time and how the French even use it for treating depression (as if that is proof of its safety!)
Gianna–
I can totally understand you freaking out! What an ordeal! I’m glad it wasn’t as bad as you thought…and was actually a bit better!
thanks Susan,
yes good news…I do hope I can write more formally someday.
Gianna,
So…it’s all good news, and at some point it will make a good chapter in a book about withdrawing from medication. In the meantime, isn’t it great to have a husband who’s so supportive? I do too, and it makes all the difference!
Susan
Sloopy! What amazing stories you have to tell.
I think I should have a stainless steel mortar and pestle…mine is some sort of stone or ceramic or something…I’m afraid bits of the pill will get caught up in the surface as it’s not perfectly smooth.
I have gone and bought the scale you recommended.
Hi again!
I suspect I am lucky to be tapering off Zyprexa (olanzapine) rather than some of the other neuroleptics.
It is generally said that the longer a drug’s half-life, the less problematic its withdrawal is likely to be.
According to MIND, the leading mental health charity in Britain, olanzapine has one of the longest plasma elimination half-lives of all the oral anti-psychotics.
Of the anti-psychotics which MIND has listed, only aripiprazole (Abilify) has a longer half-life (3.5 to 6 days) than olanzapine.
As for what this could mean for tapering, I paraphrase below what Professor Heather Ashton, Emeritus Professor of Psychopharmacology at Newcastle University, has to say on the subject:
As I understand it, any minor errors in the daily dosages I measure with milligram scales should be smoothed out by the long half-life of Zyprexa.
Other factors could affect the withdrawal to a greater degree than any day-to-day fluctuations in dose.
Caffeine, nicotine, and certain food supplements, for example, have been shown to interfere with the same enzyme pathways that are utilised for drug metabolism.
In the case of olanzapine, this metabolic interference is potentially so significant that an explicit warning of interactions is given both in the consumer documentation for the drug, and also in the documentation for nicotine replacement products.
I purchased a clinical grade stainless steel pestle and mortar in anticipation of using it to grind pills into powder. Shown in photo 1 below. However, I am not taking a small enough dose to warrant doing that just yet.
photo 1.
A lady who posts to Catherine Creel’s Yahoo! Help Group offers some helpful advice on “cutting” a crushed pill with an inert powder like starch or castor sugar. This should allow for even greater accuracy in measuring very small doses of a drug.
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Returning to the subject of counterfeit products, and their detection, the milligram scales have come into their own!
On Saturday, I got dragged into Birmingham’s rag market. I came away with half a dozen t-shirts, two pairs of jeans and a pocket full of change.
When I got home and emptied my pockets, one of the pound coins caught my eye. The inscriptions on the coin were very poorly defined and the coin looked like it had been coated (it had).
I guessed it was a counterfeit, made of a white metal alloy and then sprayed to imitate the pale yellow of the one pound coin. Here is a photo of the counterfeit coin (bottom right) shown next to three genuine pound coins:
photo 2
And a close up of the counterfeit on the right:
photo 3
Visual examination of a coin is a subjective test. So instead, I put the coin on the milligram scales. I found that its weight (9.085g) was far outside the Royal Mint’s factory tolerance of 9.500g ± 0.238g. Five other pound coins I weighed all fell within that tolerance.
This coin is provable counterfeit.
I have spent the whole of Sunday annoying everyone, getting them to empty their pockets of coins so I could weigh them!
j12—
I intend to crush the pill to powder before putting it on the scale…the powder will be mixed around quite thoroughly before going on the scale…I will be using a mortar and pestle which I already have…
I don’t know how Sloopy is doing it.
Also, I’ve had doctors tell me to cut unscored pills many times…I actually can’t imagine that pills would not be equally dispersed with drug throughout the filler….It would be harder to guarantee the same amounts in parts of the pill than to simply assure it’s all equal as far as I can imagine…but who knows when it comes to pharmaceuticals.
I appreciate you looking out for us j12!
Hey Gianna and Sloopy,
After looking at the above pics and the scales, I’ve been thinking of you both all morning and well, worrying a little… Just a thought/concern about you getting the amounts of meds you desire as you taper… When I was in nursing school ( a LONG time ago!) we were taught never to cut a pill in half or in quarters, unless it was “scored,” because the manufacturer would not guarantee that the exact amount of specified drug was in any portion in exactly the same amounts. The idea is that the whole pill or capsule is assured to contain a certain amount of medicine is what I’m getting at…It’s kind of like a box of cracker jacks–there’s not a reliable way of getting the exact same amount of peanuts in every handful, and only once will you get the “prize.” Maybe it’s different now, but I suspect it’s not, and just wanted to ask you about this, out of caring and concern for your continued success and sense of well being! It’s clear that you want to know how much you are ingesting at any given time.
I think the liquid mixture you’re (Gianna) using right now would be more likely to have an equal dispersion, but I’m a little concerned about the pills you may need to work with when you begin to taper klonopin. When my son was on zyprexa for a short time, I don’t recall that it was scored, and I just wanted to mention this for Sloopy, especially. (He went from 15 to 7.5 in a day, as I recall, and onto another med over time, because it clearly wasn’t working. Now I understand that he was also withdrawing, which added to an already crummy experience, as you well know. arrrggh!)
My hope is that it’s not a problem at all, and I’m thinking too much (again!)…Maybe it’s really about maintaining a certain blood level over time and this is accomplished by consuming the same pill over time. (My daughter-in-law is a pharmacist, and I’ll ask her about this next week when I see her.)
PS Thanks for the nice response above…I don’t know how in the world you keep up with all of us, so thanks! (again!)
Just the one scream – well done – I bet it was a very loud one! Very glad to hear alls well that ends well.
Best wishes to ya
j12,
I didn’t get back to you directly today and just wanted to say I was very touched by what your shared…your analogy is very sweet…and yes moving is stressful…and taking on larger debt is stressful…
but over all it’s good stress…
thanks Sloopy!
taw…
you are one of the people who has inspired me to get TCM….I know I need someone well trained…I would need to find the right person…
For now though I feel I need to wait as I don’t want to many treatment modalities at once…
thanks for stopping by!
I am making slow progress with tapering but seem to be getting on okay with a set of AWS Gemini-20 milligram scales. They were about US$40. I think it’s the way to go.
Here are some photos of my tapering laboratory!
photo 1
photo 2
photo 3
In the last photo, spot the French livery on the Zyprexa pills that were supplied to me last summer (second box down).
To quote the warning from Britain’s toothless equivalent to the FDA:
Surely not!
How frustrating…and yes, funny, but I totally get your hysteria. I’m a math geek, and still dilution formulas can get very confusing. How strange to suddenly be glad you had a poorly marked measuring device!
I know I’ve told you this before, but yes, acupuncture may be worth a shot once you see where you are on the PMS. I went from completely irregular (sometimes skipping up to 6 months), mostly anovulatory cycles to regularly ovulating with even cycles, in about 6 months of treatment. You do need someone good though. Many American acupuncturists are under-trained. It wasn’t my original goal, but it has turned out that a side benefit is that I am indeed much more even keeled after doing a year of treatment.
yes the syringe that came with the risperdal is a drawing syringe. It’s just relatively large measurements which means I have to make solutions of risperdal with water added to get the appropriate measures of down to .01 mg…
the math is all rather difficult as I’m terrible with numbers.
I’m doing preliminary research on buying a microgram scale for my klonopin withdrawal….
It’s not soluble in water so I don’t’ want to do a water titration…
I’m gonna have a ton of paraphernalia by the time this is all over.
I can understand your difficulties in sourcing a suitable needle.
I had a friend, “Steve”, who felt inadequate with his appearance. He decided to bulk himself up using anabolic steroids.
Someone at his gym supplied him with testosterone cypionate, in injectable form, at great cost.
His steroid “dealer” could only spare him the one needle. Apparently they blunt very quickly, too.
Unless you are a heroin addict and registered with the Justice Department, hypodermic needles are apparently like gold dust to obtain.
Steve headed for the local family doc to explain the problem. He took the steroids in with him to show the doc.
The poor doc looked confused. This was a first for him in 30 years of practising general medicine.
The doc took the steroid packaging from Steve and examined it closely. All the documentation was in Spanish but he managed to translate just enough to realise the drugs were “for equine use only”!
On reading that, the doc refused on clinical grounds to have any further involvement. Steve left with a flea in his ear and his tail between his legs.
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On a completely separate note, I hasten to add..
The inkjet refill kits often contain what I think they call a “drawing needle” (as opposed to an injecting needle). The needle is very fat and blunt. The syringe has the typical ml/cc scale along the side, and works as intended for drawing up a precise measure of liquid.
I use a drawing needle for measuring glyphosate for killing the garden weeds.
Maybe a drawing needle would do the job for the risperidone?!
Hi Gianna,
They say that, next to losing one’s spouse, moving is the 2nd most stressful event in a person’s life–you’re in the middle of a ton of change and some uncertainty, even though it’s a change you want!
It’s absolutely normal’ that you would be more reactive when the seriously unexpected happens. A person is bound to be more sensitive than usual under the circumstances. And it’s absolutely great that you have a husband like you do and that you could laugh at it when it was over. ( I would have freaked out over the possible med error, too. I worked in a hospital for many years and that kind of stuff really happens easily, even to the pros, and more often than people know–look at the babies and the heparin on CNN recently! Your respect for correct dosage is warranted!)
So here’s hoping that you can keep laughing and accepting and being sooooo GOOOOOOOD to yourself and your husband for the rest of the summer while you transition into the new home…And you’re right, you are delicate. We are all pretty fragile sometimes–I picture some of those plants in your garden–the ones you’ll transplant into the new place (if you’re anything like me). They’ll take a few weeks to figure out how to optimize the new digs, and you’ll be taking extra care of them until they adjust. They’ll wilt or lose some leaves, of course. But eventually they adjust and they blossom with the sun’s love…and yours.
Hi Mark,
Yes, that’s right, but that is what I’m critical about too. Life is to be lived in the moment. It wouldn’t have been the end of the world had the miscalculation been what I thought when I was upset.
I’d like to stop feeling like my life will start when this chapter is over. My life is now in this moment. Sometimes I know that and enjoy it…others not so much.
Of course my life in that moment was pain and panic, I experienced it and moved on before I discovered the truth. Truly feeling what you are experiencing could also be considered living life in the moment…even if not so completely gracefully.
The drug withdrawal does leave me more emotional, as does the PMS.
Wow, what an experience! I’m glad you had your husband with you when it happened.
IMO
You take withdrawal very seriously that is why you were so upset. When you finish your withdrawal you have so many hopes and plans, the miscalculation threatened your coming healthier life . Reason for your strong emotions.