Shire & Proamatine?!

[TaraMc9]

Hi Everyone,

I have read many posts on the forum, but this is the first time that I'm posting anything. I was diagnosed with POTS almost 10 years ago. I was basically bedridden until I saw Dr. Grubb. Since that time, I have been on a combo of meds, including Proamatine. I contacted Shire Inc, the manufacturer, yesterday about possible co-pay assistance. The message that I received back was "Hi Tara, Shire is no longer manufacturing Proamatine and therefore cannot offer co-pay assistance." After that, my co-pay was the last thing on my mind! Does anyone know if they are stopping the manufacturing of Proamatine completely or just until things with the FDA are cleared up? I was switched to a generic 5 years ago by my insurance company and completely relapsed. When I finally got into Dr. Grubb, he switched me back to the Proamatine brand and said the generic was "garbage". I am completely freaking out over the possibility of ending up back where I was, unable to work or function. If anyone has any information on this topic, I would really appreciate it. Thanks so much!!!!

[Sophia3]

Sorry you can no longer get Proamatine.

I've not come here much in last several months but am confused. I thought many posted here that Shire was STILL making this drug due to our calls/emails & such.

Is this NOT TRUE?? No more proamatine.

Can somebody update people? I was thinking of asking for a script but not if there IS not medicine.

Generics were CRAP..especially the one made by that drug company in Morgantown W Va . forget the name

[Rachel]

Hi Tara! Welcome to DINET! I'm glad you have decided to start posting and joining in our conversations.

Here is some background on ProAmatine (generic name, midodrine), Shire, and the FDA. There was a big issue a few months ago. The FDA was going to withdraw midodrine from the market unless Shire conducted more tests to prove that the drug is effective. Shire said that they would discontinue manufacturing the drug. Midodrine doesn't bring in much money for them, and it wasn't financially worth it for them to conduct the studies.

Doctors, patients, and friends all wrote, called, and emailed the FDA about this issue. There were so many calling and submitting comments on their website that we clogged their phone lines and froze up their website! In the end, the FDA decided to allow midodrine to continue to be manufactured while they work to obtain the data they need proving that the drug is effective.

The last I had heard from Shire was that they changed their minds and had decided to continue to manufacture ProAmatine. You can read about that here:Shire Does a Turn Around. Apparently they changed their minds (again!) since they told you they aren't making it anymore.

Here is the most recent information that was posted on DINET regarding the FDA and midodrine: More on Midodrine and the FDA.

Regarding generic versions of midodrine - they are worth a try. In my experience some work better than others. I have tried three generic brands: Mylan, Global, and Apotex. Mylan was not very effective for me at all. Apotex was definitely better, but the Global midodrine is the best. I currently take 15mg of Global midodrine, and it works well for me. Whenever I refill my prescription at the pharmacy I always request the Global brand, and my pharmacy has been great about getting only the brand I need. If they are sent the wrong one, then they return it and get the Global.

I hope you can find a brand that works for you.

Rachel

[Sophia3]

Yes it was MYLAN that was horrible. I needed half a pill & it crumbled in the scored area so much, Kroger ALLOWED me to return it & just pay diff for name brand.

Anyway, we guess Shire changed their mind & quit making w/o alerting the media

Glad I never counted on it to function but many do . . .

[TaraMc9]

Thanks so much for your responses!! I'm glad there are some generics that seem to work. The email that I received from Shire was such a shock. I did email them back asking for more info on Proamatine being discontinued. I'll let all of you know if I hear anything back from them. Thanks again for your help!!

[iheartcats]

I can't get Global anymore (what I currently take) My RX plan changed to Apotex, so I am glad to hear that it's decent.

I can't get brand, but I wonder if Shire will or won't be making it any longer?

[Sarah4444]

I thought I was just imagining things. I started on Amatine/midodrine this summer in the middle of the controversy about whether it would continue to be available. Up in Canada we had a different issue that also apparently limited availability, so I was just grateful to get anything my pharmacist could get his hands on. I started with little orange pills with a flat top that were kind of crumbly and dissolved in my mouth before I could swallow them - were those the name brand? (in Canada they're called Amatine). Since then I have gotten midodrine, I think from Apotex (orange, but more smooth looking), and they don't seem to work quite as well, but there are so many variables that affect how I feel I just dismissed this feeling. Did Dr. Grubb think all the generics were less effective than the name brand?

[TaraMc9]

Hi Sarah,

When I relapsed, I didn't even think about my change in meds from brand to generic. Dr. Grubb was on medical leave at the time, so I went through a lot of different doctors, tests, and trial & error to try to get back on my feet. When I saw Dr. Grubb, the first question that he asked me was if I was on brand or generic Proamatine. When I said that I was switched to the generic, he told me that was why I had relapsed & that the generic was, in his exact words, "garbage". After he switched me back, I was able to get back to my normal life within a few weeks. Of course, that was about 5 years ago, so maybe there are new generics since then that work better. Unfortunately, I have no idea which one I was given. I'm very relieved that there seem to be at least some generics that are effective. I have not heard back from Shire, but if I do, I will let everyone know what they tell me.

[kjd111]

You know, we never even thought about the generic component of this. I knew my daughter's midodrine was generic, but not which one. I just went upstairs and looked. Hers is Eon labs, 10mg. Anyone have any experience with that one vs. the ones mentioned above?