1. Figure out the order in which to do things.
It’s only possible to use a compounding pharmacy by obtaining support and specific prescriptions from a prescriber. At the same time, it can be helpful to know exactly what one will be asking for before approaching a prescriber. Therefore, it’s likely to be useful to simply read through this entire section before concluding which order of decisions and actions make the most sense in any particular circumstances.
Either way, it’s important to take time to make careful considerations, because once begun, consistency of approach can be very helpful for the most optimized taper. That said, it’s always possible – and sometimes advisable – to change choices later if need be.
2. Determine if there’s a prescriber willing to help.
Compounded prescriptions are written in a more complicated way than regular prescriptions, so using this method for tapering requires ongoing support and commitment throughout the taper process from a prescriber. Here are a few helpful tips from the layperson withdrawal community for preparing for a conversation with a prescriber:
- Review Step 6 in Prepare, “Communicating with Prescribers”, and reach out to folks at the Inner Compass Exchange for advice regarding bringing up this topic with a prescriber.
- Be clear with the prescriber about why it is that you’d prefer this taper method. Discuss the pros and cons described in Step 15, and include any additional personal reasons you may have.
- Know the specifics of what you’ll be asking your prescriber for, and be ready to articulate your wishes and reasons succinctly. Reading through this Step in its entirety first and understanding this method and your planned taper schedule thoroughly will help you better convey your needs and preferences.
3. Warning: Make sure the compounding pharmacy is reliable.
Compounding pharmacies are not well regulated by either the states or the federal government (FDA). Variability in doses prepared by compounding pharmacies has been found to be large. Meanwhile, it is very difficult to determine if a particular compounding pharmacy is reliable or not.
Numerous scientific studies have shown that compounding pharmacies can be unreliable, and that it is not safe to assume that a pharmacy is going to be more reliable just because it is part of a well-known or reputable chain. Staff may be poorly trained and/or under immense performance pressures, the safety conditions may be improper, the sources of their drugs may not be reliable, and the actual amounts of active drug ingredients in compounded products can vary substantially and dangerously from what is purported to be in them. Unfortunately, you may only discover that there is a problem if and when your own body has a bad reaction to a compounded drug. Along with asking the pharmacy/pharmacist for any evidence of the company’s reliability, there are a few things that one can do to try to help lessen the risk:
- Perform some basic web research about the pharmacy or pharmacy chain, reading reviews and looking for news stories, etc.
- Use “Google Scholar” or another tool for searching scientific research databases to see if the pharmacy has been part of any formal safety studies.
- Solicit the opinions of other laypeople from the withdrawal community at the Inner Compass Exchange or other online forums.
- Check the FDA page “Compounding: Inspections, Recalls, and other Actions”, available at this link. At this time this is the best source of which we are aware for information about compounding pharmacies that have failed to meet legal safety requirements.
4. Find out about time, costs, and proper storage.
Assuming that the pharmacy has been determined to be reliable, these are questions about time and costs that many in the lay withdrawal community have found helpful to get answers to ahead of time:
- How long will it take?
It is not unusual for a compounding pharmacy to require seven working days to prepare a formulation. Using mail-order compounding pharmacies involves shipping time as well.
- Will insurance cover the cost?
Some insurance plans don’t cover compounded drugs at all, while other plans may require “medical necessity” paperwork from a prescriber.
- What will the out-of-pocket costs be?
It can be helpful to ask the pharmacy to check exactly what the co-pay will be, since insurance companies sometimes charge a higher co-pay for compounded drugs.
- Are the costs and time the same at every pharmacy?
Compounding is a customized service and the time required and prices involved may vary between pharmacies.
- Is it possible to save on costs by getting only a portion of one’s daily dose compounded?
The calculations and additional work at home for the taper process may become more complicated, but some people end up saving on costs by continuing to take a portion of their daily dose normally and getting only the other portion compounded. In this case, of course, a prescriber has to write two separate prescriptions.
- Is it possible to save on costs by choosing a liquid over a solid form?
If tapering using compounded capsules, a new prescription has to be written every time a new reduction in dose is made; this may be more costly and some insurance companies may not cover the more-frequent prescriptions. Many people find that choosing compounded liquid gives them more flexibility.
- How should I store my compounded liquid and/or capsules?
Be sure to ask the pharmacist about how to properly store your compounded drug. See the USP <797> standard for storing nonsterile compounded drugs.
5. Set a schedule.
Back in Step 14, you decided whether you’d taper using a Daily Microtaper or Cut-and-hold schedule. If it’s been a while since you made that decision, you might want to go back and refresh your memory. As discussed below, that decision influences the details of the compounded prescription that a prescriber will have to complete.
6. Decide on the drug forms and amounts.
When using a compounding pharmacy, two key questions must be asked together, because their answers depend in part upon each other:
- Is it better to get the compounded drug in liquid or capsule form, or in a combination of both?
- Is it better to take all or only part of one’s daily dose in compounded form?
Apart from what’s already been discussed above, here are some additional factors to consider when comparing compounded liquid with compounded capsules and trying to answer these questions:
Issues around taper schedules
- If using a Daily Microtaper schedule, a compounded liquid formulation is needed for at least some portion of the daily dose, in order to make small-enough daily reductions. It may also require the ability to make additional dose adjustments at home by diluting the liquid—though typically, compounding pharmacists can create a liquid-to-drug ratio that is sufficient.
- Compounded capsules can work for a Cut-and-hold schedule, but since prescriptions are typically filled in 30-day increments, cuts that are more frequent than once a month will require new compounded capsule prescriptions more than once a month as well.
Issues around effectively adjusting a taper in accordance with the body’s signals
- Compounded capsules make it difficult, if not impossible, to vary a taper rate in response to the body’s signals, due to the “boxed in” dose amount of each prescription.
- Compounded liquid provides options for adjusting the rate and/or frequency of cuts in accordance with any upticks in withdrawal symptoms or other issues.
Issues around transitioning from a solid to liquid form and central nervous system stability and sensitivity
- Some people can switch from all solid to all liquid right away with no or minimal problems. However, other people find the transition to be disruptive to their central nervous system. For this reason, many people opt to continue taking the majority of their daily dose using their original manufacturer’s pills or compounded capsules, while taking a smaller percentage of their daily dose as a compounded liquid from which they make their reductions.
Issues around time and effort
- Using compounded capsules requires little extra work or difficulty beyond what one would normally do when taking the original medication.
- Tapering using a compounded liquid – in whole or in part – may require doing some more complex calculations and purchasing and using some additional gear to make cuts.
7. If using a compounded liquid, decide on the ratio of drug to liquid.
In the layperson withdrawal community, people use a variety of different volumes of liquid when tapering, in part depending on whether they’re tapering using a Cut-and-hold or Daily Microtaper schedule, and in part as a matter of personal preference. Additionally, some choices in volume can also make the handling and math calculations simpler! Because compounding pharmacists are typically willing and able to accommodate their clients’ needs, the clearer you get for yourself on what your optimal liquid-to-drug ratio is based on your circumstances and preferences, the better. Here are a few tips laypeople often share with one another to help inform this decision:
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Choose a volume that’s large enough to allow for accurate and more easily made small reductions in dose based on a particular schedule and taper rate.
Generally speaking, the larger the volume of liquid that a solid is distributed in, the fewer particles of solid there will be in a particular portion of that liquid. Therefore, a general principle in using a liquid for tapering is that the more liquid there is, the smaller a reduction in dose one can make at any given time. This is particularly relevant for people who are doing a Daily Microtaper since, all other factors being equal, the amount removed each day is teeny-tiny in comparison with a Cut-and-hold schedule, where bigger cuts are made less frequently.
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Ask the pharmacist to be consistent in the amount used.
Given the complexities in calculations inherent to tapering, laypeople find it helpful to be as consistent as possible in the amount of liquid used. There may still be points along the way, though, when increasing the amount becomes necessary—for example, a dose gets so low that it’s difficult to remove a sufficiently small amount from the compounded liquid due to the measurement limitations of syringes. At that point, it’s important to reassess the optimal liquid volume and update the compounding pharmacy with the new preferred drug-to-liquid ratio.
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Choose an amount that makes the measuring and math easier.
To simplify the math calculations, some people opt for a liquid volume that will make it easy to remove cuts that fall cleanly into relatively simple numbers, given their chosen taper schedule and monthly taper rate. For more information, see 'Doing calculations for a Taper' and 'Special Tips for Calculations and Liquids' in Step 18.
8. If using a compounded liquid, decide how to transition from solid to liquid.
As mentioned previously, some people can switch from all tablets to all liquid right away with no or minimal problems, while others find the transition to be disruptive to their central nervous system. It’s good to get informed about possible options for making the transition as smooth as possible.
Drugs in liquid form are absorbed faster by the body. Because of this, some people find the switch from solid to liquid can set off new or intensified emotional, mental, physical, or sleep-related problems. Those who experience these problems often report that they seem to resolve in a matter of days or a couple of weeks. Occasionally, however, some report feeling destabilized by a full transition from solid to liquid for weeks or even months—so much so that they end up going back at least partially onto a solid form of drug. Because there’s no way to know in advance how the body will handle a rapid switch from solid pill to compounded liquid, various transitional options can be considered:
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Option 1: Transition all at once from solid to compounded liquid, but take time to adjust.
After switching from the original manufacturer’s solid drug to the compounded liquid drug, some people wait at least two weeks before initiating a taper to give the body some time to communicate any problems. They then either proceed with the taper, hold steady at the current dose, or switch to options 2 or 3 below.
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Option 2: Transition gradually from solid to compounded liquid before beginning to taper.
If currently taking, for example, a total of 6 tablets once a day, one could continue to take 5 tablets a day while replacing the sixth tablet with compounded liquid. After waiting a time to adjust, the person would switch one additional tablet to compounded liquid form, and wait again. And so on. Once fully switched over to compounded liquid, the person would then begin tapering. Alternatively, if the person is taking multiple doses per day, the person might convert a portion of each dose to a liquid form for tapering purposes.
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Option 3: Transition only partially rather than fully from solid to compounded liquid, while starting to taper immediately.
If currently taking, for example, a total of 6 tablets a day, a person could continue taking 5 tablets while replacing the sixth with compounded liquid. The person would then begin making reductions in dose from that compounded liquid. Once the person had tapered fully down off the compounded liquid and was taking just the 5 tablets, the person would then transition to taking 4 tablets while replacing the fifth tablet with compounded liquid. And so on. Alternatively, if the person is taking multiple doses per day, the person might convert a portion of each dose to a liquid form for tapering purposes.
9. Record decisions.
Once you feel ready, write down all of your key decisions in your journal to guide you moving ahead.
My taper schedule:
Compounded liquid, capsule, or both?:
How much of my daily dose will I take in solid form (in mg)?:
How much of my daily dose will I take in compounded liquid form (in mg)?:
How I’ll transition to liquid:
10. Get instructions.
It’s important to ensure that the compounding pharmacy provides instructions on any key issues such as safely storing the drugs, how to manage compounded liquid, and if and how the compounded liquid can be safely diluted.
11. Optional considerations for getting a compounded prescription specially tailored to preferences.
Most compounding pharmacies are accustomed to clients who have sensitivities of one kind or another. Here are some other ways in which people in the lay withdrawal community sometimes get their compounded drugs customized:
- Try to ensure consistency of dose by asking for the drug to be compounded using the same brand-name or generic version that one has always used.
- Let the compounding pharmacist know whether you have particular sensitivities to substances, chemicals, flavorings, colorings, sweeteners, or other additives, as they may be able to avoid including them.
- If the liquid compound prescription calls for a lot of liquid, ask for multiple small bottles rather than one large bottle. This can make it easier to shake, manipulate, and store the bottles.
