Friday, November 6, 2009

Topamax, Topiramate or ?

I've always mostly liked Topamax and felt like it was helping me. It went generic this past year which doesn't sound like much, but I've finally come to the conclusion that I don't think the generic's the same as the real deal.

I probably never would have questioned anything about the generic being different than the brand if it wasn't for two different articles I read which were written by Teri Robert: Topamax or Topiramate for Migraine - A Difference? and Did You Know Generic Migraine Medications Can Vary? If I didn't read these articles, I think I would have thought it was either my other medication acting up or the Topamax starting to not work as well or my Migraines had started changing yet again.

I've been busy doing many different things since reading the articles and think I have finally decided which path I want to or have to try next given other factors that come into play now too.

I started to notice that the generic prescription wasn't working quite the same. After I picked up my second prescription of Topiramate, I saw the tablets looked different than the first although the labels on the two bottles were exactly the same - even where the manufacturers name went. My pharmacy confirmed that the bottle was mislabeled with the wrong manufacturer name and gave me the correct name. The second generic manufacturer tablets seemed to work a little better than the first.

In Teri's first article above, she recommends the following: "If you're taking topiramate and switching to the generic, keep your prescription bottles. The bottles should have the name of the generic manufacturer on the label." I concur. I would also say to keep a log of any changes in how you feel. I honestly didn't know until after I read those articles. I wish I knew earlier or kept a better diary of these types of changes.

In Teri's second article above, she explains why the medications from generic manufacturer to generic manufacturer may be different: "It turns out that FDA standards on generics and bioavailability are rather loose. Bioavailability is the rate at which a substance (such as a medication) is absorbed into the body and made available at its site of action. What's interesting is that current FDA regulations allow the bioavailability of a generic medication to range from 20% below that of the original brand name medication to 20% above. In an extreme case, there could be a 40% difference in bioavailability between two generics made by different manufacturers."

In the beginning, I wasn't paying much attention to the differences when taking the two different Topiramate tablets, but I did notice that the first few times I started a new manufacturer that I felt a little buzzed. My Migraines were on the rise, but I also changed another medication when I initially switched to Topiramate and needed about three weeks to titrate down from it before starting the new med. I hadn't really considered the change from brand to generic a big change at the time. I will know better for change management purposes if there is a next time.

During my last doctor's visit, she wanted to switch me back to the brand name Topamax since her experience was that generics didn't work as well for her Migraine patients. I probably made a mistake when I told her I wanted to try the generic a little longer to make sure I gave it a fair try, to make sure it wasn't the other medication change and because the price difference was tremendous. I have since started my third Topiramate manufacturer, but this time I went through my mail order pharmacy. This time, I felt a little more than buzzed.

I started paying attention to more side effects with the third manufacturer. After a while, I felt like I had a knot behind my forehead which would not go away and would often trigger more Migraines. I got the brilliant idea to switch back to some left over Topamax to see how that would work out.

My results? The knot has gone away and the Migraines have calmed back down some. In retrospect I have also noticed that my daily nausea is no longer around which I hadn't even attributed to the Topiramate until now - a good two plus weeks back on the Topamax.

My predicament? We just received our open enrollment information for next year. Our prescription plan is changing. We're going to a three tier plan. Bottom line is Topamax is a non-preferred drug where if I wanted to use the brand name, I would not only have to pay our maximum plan amount for prescriptions, there would be a percentage penalty on top of that maximum plus I would have to pay the cost of the generic. What? Yes, you heard me right: max amount + penalty + cost of generic. All of that would make the prescription cost over seven times more to use Topamax than it would to use Topiramate. That's a huge difference per year.

My other option would be to keep trying different manufacturers of Topiramate until I can find one I can work with. I emailed my mail in pharmacy to see what options I would have if I had one manufacturer I wanted to use since there appear to be differences between manufacturers; would I be able to request it from them? Here was the response I received from my mail in pharmacy:

"To receive a generic medication from a specific manufacturer, please obtain a new prescription from your physician. On the prescription, your physician must indicate the specific manufacturer needed, indicate "DAW" (dispense as written) on the prescription, and indicate the medical reason for needing this specific manufacturer. When the prescription is received, a pharmacist may confirm the need for the specific manufacturers product with the prescriber. Based on the information received, the specific generic medication may or may not be ordered."


I would be able to request the one manufacturer, but I would also have to go through a lot of trial and error to get there, to find the one manufacturer that worked for me. I've also been reading some things about a pharmaceutical Orange Book. In just glancing through Topiramate, not really understanding everything I was looking at and without checking with my doctor or pharmacist, I think I've decided I'd like to go a different route right now.

I know a lot of people either like or don't like Topamax. It has helped me for over three years and I have never really complained about it. The benefits have always outweighed the detriments although there have been many times I have questioned if I should really stay on it or not.

As of right now, I am going to talk to my doctor during my next visit about trying a different medication in the same class. I admit I am nervous about the change for many reasons. Topamax and I have been through a lot. More good; not too much bad. Thank you Teri for the eye opening articles!

10 comments:

MaxJerz said...

You can also ask your doc to report to the FDA your experiences (and her other patients' experiences) with the difference between generic topamirate and brand name Topamax. The FDA does solicit those comments and if they get enough comments from doctors about less effective generics, there's a possibility that they will require changes.

Also, if your doctor writes you a letter of medical necessity, you may be able to present that to your insurance company so they'll cover the brand name Topa at a lower cost.

Best of luck to you!

Be well,
MJ

WinnyNinny PooPoo said...

There are "branded generics" that have more quality control than straight generics - kinda inbetween name brand and generic, but most prescription plans cover these as generic. You might check with your pharmacy to see if there is a branded generic of Topamax you can use.

MigrainePuppet said...

Thank you for the great ideas MJ! Sometimes I still feel like I have no clue as to what my options are that these really help a lot.

MigrainePuppet said...

Hello Winny - When I was speaking with my mail in pharmacy about our new three tier plan, they looked up to see if there was another company that handled Topamax as a branded medication and they said there was not. I think that's what you're talking about too. I get a little cloudy here because this is all so new to me, but she said something like if there was another company that made Topamax as a brand that then there may be someway to get it cheaper? She said since there wasn't another company, that they really couldn't do much. I haven't followed back up on that yet; there's so much going on in this condensed time frame.

Thank you for the information. I'll have to look back into this again with a clearer head and more info now.

WinnyNinny PooPoo said...

Yep I think the pharmacy and I were thinking the same thing (I hope). Maybe in a few months somebody will make a branded generic then!

The branded generic name is never quite the same as the brand name (so Topamax won't be the name they use...) I think because of copyright on the name. I take Levoxyl [branded generic] instead of Synthroid [the brand name], the generic name is levothyroxine.

MigrainePuppet said...

Thank you again Winny. There is so much to learn with this stuff. I've had to get out of my ostrich comfort zone -- bury my head in the sand and it will go away. That doesn't work anymore. All of this information is so helpful.

Anonymous said...

I'm new to this site yet somewhat similar to Migraine Puppet. After trying gobs of different meds for my migraines for since the 30 years, Topamax has been the most successful, for the last 3 years. However, my 3 tiered ins. plan switched me to a generic in July. I didn't think much of it until 2 - 3 weeks later when my migraines became suddenly unrelenting and I became ravenously hungry too quickly, which is a bad trigger. I dawned on me that it might be due to the generic, so I compared ingredients. I was on vacation and had received the meds from mail - in. At my request, they sent me Topamax, although I had to pay a fortune. I looked at this site because I thought I would investigate and compare ingredients of other generics in preparation to my upcoming neurologist's visit. Your experience helps me think maybe it's not worth my trying to do my own experiment on myself. Thanks. Louisa

MigrainePuppet said...

I'm glad my experience made you think too. I think I will have the option to go back and try the different manufacturers if push comes to shove. I do like to keep all of my options open. It does get frustrating since the brand seems to be working better with my current other preventative. Good luck with your journey!

lfay said...

I also took Topomax for years, and had Amazing results...literally gave me my life back! Like others my insurance changed, and new insurance also uses 3 tier system....in the past I had tried on 3 separate attempts to use topiramate, and each time suffered with return of numerous migraines to point of affecting quality of life...now back on topomax, all was good again until insurance changed....can't even begin to afford to pay for topomax...discussed with neuro...tried divalproex..generic depakote...had 18-20 severe migraines in 2 months...in desperation called today , although this will be 4 th attempt in less than 3 years will again try topiramate....really angry that when I tried to bring this to various Dr.'d, all said shouldn't be any difference!

MigrainePuppet said...

Ifay - when I went to my Migraine specialist this year, he gave me the option of going back on topiramate. I asked him about the differences too.

He said I probably was not on a high enough dosage and mentioned the bioavailability differences as mentioned in the link to the article Did You Know Generic Migraine Medications Can Vary? in my post.

Is your doctor a true Migraine specialist? Maybe it's time to switch doctors. Good Luck!