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Patient experience with medicines?

Does anyone know of a website or organization that specializes in collecting information about how patients actually experience their medicines, especially when they first start on them.
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replied October 15th, 2012
Especially eHealthy
Cornergas,

It depends upon what country you are in.

If you are in the US, and you have an issue with a medication, you should notify the FDA (Food and Drug Administration). While they are especially interested in ADR (adverse drug reactions), they also want to know if a patient has any problems with a medication.

You can notify the FDA yourself, on their website, or you can tell your pharmacist and he/she can submit the information to the FDA.

Good luck.
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replied October 31st, 2012
Experienced User
I have been on an SSRI and a SNRI along with depakote and then lithium for the past 3 months and you would have NO IDEA how deathly ill I have been. I have many times thought that I am dying and yes I have been dying. I called poison control and they told me to go to the ER and I said NO WAY as I went before and they did nothing but put me in the Funny Farm for 3 days and charge me $8,000 and did absolutely nothing and did not know anything. So I called the Crisis Worker who said to wait until I see the Doctor today, and then I talked to 2 Pharmacists who said it definitely sounded like I had that darn Serotonin Syndrome. Well, the heck like I am going to wait for some doctor to tell me I can get off the lithium. I dropped it last Saturday and I go to see the Doctor in 2 hours and boy do I want to tell him where to go, but alas I had better take the duct tape with me to cover my big mouth with (plus my husband is going with me). This is LETHAL! You have no idea how "drug cocktails" can KILL YOU! I can't say it enough. There are alternative things to take out there. Watch out for the Medical Profession. They are only "half there" when it comes to what they prescribe for you. They have no clue at times what they are doing. For God's sake, watch out for yourself because they will not. They seem to have a few screws loose when it comes to what the medications will do to you. I talked to the nurse yesterday and she said "I think I have heard of it". She thinks that - oh my - what are we coming to. These guys should know these things. If we do not speak up for ourselves, we will be dead. Enough said.
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replied October 31st, 2012
Experienced User
I have been on an SSRI and a SNRI along with depakote and then lithium for the past 3 months and you would have NO IDEA how deathly ill I have been. I have many times thought that I am dying and yes I have been dying. I called poison control and they told me to go to the ER and I said NO WAY as I went before and they did nothing but put me in the Funny Farm for 3 days and charge me $8,000 and did absolutely nothing and did not know anything. So I called the Crisis Worker who said to wait until I see the Doctor today, and then I talked to 2 Pharmacists who said it definitely sounded like I had that darn Serotonin Syndrome. Well, the heck like I am going to wait for some doctor to tell me I can get off the lithium. I dropped it last Saturday and I go to see the Doctor in 2 hours and boy do I want to tell him where to go, but alas I had better take the duct tape with me to cover my big mouth with (plus my husband is going with me). This is LETHAL! You have no idea how "drug cocktails" can KILL YOU! I can't say it enough. There are alternative things to take out there. Watch out for the Medical Profession. They are only "half there" when it comes to what they prescribe for you. They have no clue at times what they are doing. For God's sake, watch out for yourself because they will not. They seem to have a few screws loose when it comes to what the medications will do to you. I talked to the nurse yesterday and she said "I think I have heard of it". She thinks that - oh my - what are we coming to. These guys should know these things. If we do not speak up for ourselves, we will be dead. Enough said.
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replied December 18th, 2012
Community Volunteer
I have a wonderful website for you. You can list all your conditions, all your symptoms, all your treatments, when you start and stop all your medications, why you stopped them, if they were/are any good, how you are feeling RIGHT NOW, etc. It's an incredible site. It's PatientsLikeMe.com They'll even send you a tee-shirt if you complete your profile (I have 2). Good luck; I hope you like it.
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