Changes in Medicine: Not a Piece of Cake

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Medicines are a daily fact of life for me, and I know in that I'm not alone.  I'm always looking for a way to reduce the drugs that I do take when possible, since virtually all have some level of side effect or interaction with another of my medications.   However, I have learned the hard way that getting off a medicine can be as difficult as getting used to taking a new one to begin with.  I thought I would share my recent story and a few tips that I've learned to deal with any major medicine adjustment.

The backstory here: Recently, my neurologist and I decided it was time to decrease one of my medications.  This was a good thing. I take the medication to help the neurological symptoms that I have from Sjogren's.  It's an anti-seizure medication called Trileptal and helps control the pain and numbness that I have specifically in my trigeminal nerve.  It's not something that prevents my out of whack immune system from attacking itself, so if I can tolerate a lower dose I'm not putting myself at risk of a flare.

As with all medications, there were side effects especially when I first started taking the Trileptal. I felt foggy like I was sleep walking half the time. I eventually "adjusted," but my brain still only worked at a slower speed.  I felt a bit like the scarecrow from the Wizard of Oz wishing that "I only had a brain".  Well, that's not exactly true, but it did feel like I could feel the wheels creaking as the they turned in my head when I had to think hard about something. When autoimmune brain fog hit, the combination was particularly frustrating.   Still, the Trileptal was the best of the many seizure medications that I tried (and there were many) and feeling slow was the least of my problems at the time when I was having such severe, disabling neurological pain.

So fast forward over three years to this summer and it was finally time to try to decrease my dosage.  The medicine is in a tricky class of drugs since one of the risks with going down on anti-seizure medicines, even if you don't have a history of seizures, is that you can actually have one.

My doctor gave me the basic guidelines for how to go down; I thought I'd follow what he said and would hopefully be done with it in a few weeks. Suffice it to say, it didn't end up exactly like that. When I tried to half my dose as my neurologist suggested, I found myself with bad headaches everyday and unable to sleep.  What immediately became clear is that I needed to go down on this medication more gradually than the "average" person.  There was no risk to going down too slowly just to going down too fast.  If I haven't mentioned it before, I tend to be sensitive to medication generally and on many occasions find myself with the side effects that less than 10 percent of the population do. Lucky me!

At that point, I brought my pharmacist and internist into the conversation as well.  The pharmacist helped me figure out the lowest possible dose of the medication available and let me know that the pills were scored so they could be further broken down in smaller increments. Instead of going down by 300 mg or 150 mg at a time, it was actually feasible to go down by 75 mg at a time.  I have now been able to lower my dose by 75 percent and instead of it being a six week process as initially planned, it took me three months.  This is certainly an example where medicine is both art and science, and each patient might need a slightly different approach.  I was more concerned with having the least side effects possible than being off the medication as quickly as possible.  Here's a few of the quick lessons I learned through this process that will hopefully be helpful in the future.  

1) Discuss an overall strategy with your doctor.  Find out about withdrawal side effects with your doctor and, if there are any, which warrant a call to the office or a follow-up visit.  Some side effects of changing your medication might be unavoidable so make sure to ask if there is anything you can do to better manage them and know what to watch for.

2) Keep a daily log of your medication dosage and any side effects you might notice.  This can be especially useful when following up with your physician.

3) Consult your pharmacist.  Not surprisingly, pharmacists sometimes know more about the metabolism, pharmacology, and timing of medications than physicians.  (To me they seem to be underutilized resource in American healthcare.) My pharmacist has been an invaluable resource about drug interactions in the past.  Luckily, my pharmacist and neurologist had the same general recommendation for the maximum amount that I could lower my dose each week.

4) Keep your primary care doctor or internist involved in the conversation.  This is important even if you are working with a specialist.  Your primary care provider often sees you more and can help coordinate care and deal with any important issues or emergencies that might come up.

5) Do your own research about possible dosing of your medication. This can be especially useful if your doctor has not given you dosing options or you are struggling with side effects. Websites such as drugs.com can be helpful for this kind of information.

6) Don't be afraid to be your own advocate and speak up, call, or email your physician.  As a patient with chronic illness, I sometimes feel like a bother when I contact my doctors office.  But if your physician makes you feel like one, you probably might consider getting a new physician.  

7) Recognize that guidelines for medication dosing are simply that.  Some people are more sensitive to medications than others.  Because not everyone metabolizes drugs the same way, partnering with your doctor to develop an individualized approach to medication dosing can be important.

What have your experiences been with changing medications?  Please share your stories or add any tips to the list. 

When a Generic is not Generic

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Ah medicines, such a wonderful part of my life.  My latest saga made me find out about the possible hidden problems in switching between generics, of which I was previously unaware.

When I went to the pharmacy last month to pick up a refill of a prescription for oxcarbazepine, I didn’t initially notice that the generic brand the pharmacist gave me was different than the one I usually take.  Oxcarbazepine, or its brand name trileptal, is an anti-seizure medication that I take for autoimmune neuropathies.  (In my case, my cranial nerves or the nerves coming from the brain have been negatively affected by Sjogren’s and this medication provides some incomplete relief.)  Lucky me, I noticed the difference once I started taking this other generic form of the drug.  First, I felt particularly groggy and sluggish on the different generic. Then I noticed that the drug was just not working and my face in particular felt numb, and I was in more pain than usual.  In my opinion, being in more pain than usual for no good reason is unacceptable.

I went to talk to the pharmacist, but that provided little help.  I asked if he could order the brand that I usually take (manufactured by Cadista) and he said that "it was not available" and that the generic manufacturers of drugs change all the time.  He appeared unconcerned by my predicament, and seemed to regard the distinction I was making between generics as irrelevant. This didn’t sound quite right to me since I had been taking this brand of my medication for over a year...so I started making phone calls.  I got in touch with Cadista directly and was told, low and behold, that they were still manufacturing my prescribed dosage of the medication. 

Well, I then knew my neighborhood pharmacist not only didn’t take seriously the problems I was experiencing, but he was also wrong about what was possible.  I went the route of working with my neurologist and my insurance company’s mail order pharmacy.  The mail order pharmacy said that they would be able to order the Cadista brand of the medication and that either I or my physician could request if a specific generic brand was preferred.  Just to make sure that all my bases were covered, I asked my physician write the three month mail order prescription specifying the Cadista brand so that there would be no confusion!  As our own patient advocates, it is often a time consuming and frustrating process to get even what should be small medical details handled.

While sorting through all this to get the medication that I needed, I couldn’t help but think that other patients might have had similar problems switching between name brand and generic drugs or between generic brands. I already knew that generic and brand name drugs have the same active ingredients, but they do not need to have the same inactive ingredients.  My big finding was that the category of drugs, anti-seizure medication that I am on are a particularly tricky problem. The FDA requires concentrations of generic and brand name drugs in the blood stream are within a very close statistical range before they are approved.  However, what the acceptable deviation ought to be for some drug categories is much less clear.

First, it turns out there is a specific open question as to whether switching brands can cause an increase in seizures in some patients and whether the FDA standards for differences in blood level concentrations between brand and generic seizure drugs needs to be narrower for this class of medications (Some generic cardiac, thyroid, and anti-depressant medications have also been of concern).  Then, just to make this issue even more complicated, a recent study from the University of Connecticut and Hartford Hospital indicates that it might not be the difference between brand and generic drugs that can cause problems for patients, but the actual switching itself whether it is between generics or a generic and brand name drug.  Currently, the FDA has three studies in the works to look at these very issues with regard to the efficacy and safety of generic and brand anti-seizure medications.  So, not only was my pharmacist wrong about the differences between generics and the availability of my generic, but he was also woefully uninformed about the particulars of anti-seizure drugs.

I asked a few doctors and started reading online and found out that this was a real problem.  One of the major concerns that physicians have is that, similar to my experience, patients might not even be notified when they are given a new version of a generic anti-seizure medication when refilling their prescriptions.  Pharmacists are not required to give this notice.  Patients also have little control to remain on specific generic medication because pharmacies often change which brand they carry based on issues such as lowest cost and availability of supply. The American Academy of Neurology has put forth two position papers expressing “concerns with generic anti-epileptic medication and that physicians should approve all generic substitutions.”  This would mean that pharmacists could not substitute generic seizure medicines for a brand name without a doctor’s consent.  

Luckily in my case, I was not at risk of a seizure, but I did have adverse side effects from switching between generic anti-seizure drugs.  My take away from this experience like many of the other medical adventures that I have had is that I cannot always rely on medical professionals for help and to provide important information. And I have to trust my instinct when something doesn’t seem right with my health and press forward for answers.  While I do admit it can be tiring and sometimes I want a break, that is what having a chronic illness and being your own advocate requires. I don’t feel that I really have a choice in this one.

Have any of you similar problems with switching between generics or generic and brand versions of the same medication?  Are there other specific conditions that you know patients need to watch out for when switching?













Sources:
Cake Health. Are Brand Name Drugs Better Than Generic?
Epilepsy Foundation of Connecticut. Press Release.
FDA. Facts About Generic Drugs.
MedPage Today. Generic Seizure Drugs Vary Widely in Bioavailability.
MedPage Today. Generic Versus Brands: How it Plays out in Practice. 
New York Times. Not all Drugs are the Same After All.
ScienceDaily. Substitution of Generic Drugs May Cause Problems for Epilepsy Patients.
UConn Today. Study: Switching Anti-epileptic Drugs Could Increase Risk of Seizures.
Wall Street Journal. Inexact Copies: How Generic Copies Differ From Brand Names.