I've been getting brand name Lomotil for years now for my SBS. In high school, I had to take 8 tablets a day - the max amount as well as Sandostatin injections in attempts to control the SBS. After about a year or more, my SBS started to become better controlled. I started taking the generic form of Lomotil until the formula changed and I was forced to use the brand name and have been doing so for years now. Well...I got a new order for my Lomotil and forgot to mark not to substitute for generic, and so I ended up with bottles of the generic form. What a headache trying to get this corrected! My mail order pharmacy wouldn't exchange the medication, although they offered to dispose of the medication for me...because evidently I wouldn't know how to flush a toilet. But that's besides the point, the real problem was yet to come. The mail order pharmacist said she would change the order to brand name and send me brand name medication. She did not tell me, even when asked, that actually a new order would be required and would be faxed to my doctor's office to be completed.
Unbeknownst to me, an order request was sent to my doctor's office and because I didn't know this, I wasn't able to warn or notify my doctor's office and ensure it was written correctly. Because anyone with any experience in the medical field, as a patient or employee, knows that a nurse typically writes the orders and obtains the doctor's signature and most doctors trust their nurses and will sign almost anything placed in front of them. Well...my doctor's nurse isn't the best to trust for this evidently. Because I ended up with exactly a 23 day supply for brand name medication with 5 refills instead of a 90 day supply and without any extra medication. My doctor writes my medication order for the max, in case I need more than what I normally take, so I'm usually actually able to stretch a 3 month supply to last me 6 months, thereby saving me more money. Well, this 23 day supply bottle at a time cost me twice the amount of the actual 6 month supply my doctor writes for me. See why I was livid!?
Some good did come of this outside of me being forced to spend way more money than I normally do. I tried taking the generic medication to see if it would work for me again. And to my surpise and an unknown reason, I've actually been able to not only take the generic medication, but have been able to decrease to only taking 1 or 2 pills a day! I can't believe it and it makes no sense because I require no less than 4 pills of the brand name in order to function, which is a stronger medication than the generic.
So I'm hoping that this trend will continue and I'll be able to return to the generic form and next time I need a new order, I'll be able to intercept the nurse and prevent her costing me an extreme amount of money.
The lesson? Always remain involved in your own healthcare, communicate at all times with not only your doctor but the doctor's office staff, it doesn't hurt to try changing up your medication sometimes, and sometimes no matter the situation, you're going to get screwed over a bit but that doesn't mean you can't or won't come out on top in the end.