"Backorder" of Primidone in Canada

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In the hope that we can get some assistance and guidance, I am posting an excerpt of a "diary" I've been keeping.
Nov 11th, 2011
"After 3 long and difficult months, Linda is back in hospital again in an effort to get back control of her epilepsy and its associated seizures and panic attacks. A "backorder" of 1 of her meds 2 culminated with 2 Grand Mal seizures Aug 13th. and she's been fighting for control ever since. This time an EEG harness will be hooked up to Linda so she's back in the hospital again. As if 22 days weren't already enough. I cross my fingers in the hope that they finally get to the bottom of this."
We've seen the CTV article on epilepsy drug shortages on Oct 17, 2011 (sorry, can't post the link as of yet) and realized that Linda's situation was the same as Robert Logan and exactly like Diane Sallows in that Phenobarbital was Linda's replacement med. except that it took 6 weeks for Linda to seize.
Linda had not had one seizure all the while we've been together ...over 15 years. Always productive and balanced, Linda again lies in Intermediate Care awaiting new results.
We are frustrated and can use some guidance. How might we get in contact with those that have experienced the same situation as Linda. Is there provincial or federal assistance plans, any recourse, etc...
Thanks,
Mike
 

No-brainer

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Even though I had my brain removed a number of years ago I still need to take Dilantin and Primidone.

A couple of weeks ago I went to renew my prescriptions. The Dilantin was OK but the pharmacy could only give me one month's supply of Primidone. That was all that they had, saying that the rest was on back order. The pharmacist figured that they'd have more in a month or so. :dontknow:
 
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Linda's second medication is Dilatin as well.
I can't understand how they could allow Primidone (or any other epilepsy med)
to run out?
 

Brainiac

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We are frustrated and can use some guidance. How might we get in contact with those that have experienced the same situation as Linda. Is there provincial or federal assistance plans, any recourse, etc...
Thanks,
Mike
Hey Mike,

Found this page: www.epilepsysupportcentre.com/share

Questions or comments can be sent to:
Epilepsy Support Centre
Email: education at epilepsysupport.ca
Phone: 519-433-4073
Fax: 519-433-4079

Contact your local epilepsy association toll-free:
1-866-EPILEPSY (1-866-374-5377)

Good luck, hope you can get some answers.
 
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Brainiac, so much appreciated!
Excellent article and call to action. Right up our alley.
You can be sure we'll offer Linda's ordeal to your link.
Top notch...
I'm beginning to like this site.
 

Brainiac

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I agree Mike, hope those people can help you and Linda out. Wonder how many people have had this happen to them? We've been lucky so far, no problems getting refills. I've always just taken it for granted.
 
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I haven't had a chance to respond as Linda's been back in hospital 9 days now. This after 22 days ending 3 weeks ago. Now, they figure anxiety attacks and I might agree but the catalyst, her 2 Grand Mals Aug 13th are still the progenitor. Hard times.
 

epileric

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Keep us updated but don't let posting here add to your stresses. It sounds like you guys have enough already.

Best Wishes to you both.
 

lavatera

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HI, Everyone,

I am new to this site, but was interested, as I have also had a problem getting primidone. They keep telling me it is on backorder, and today when I went to get different prescriptions filled, they had one waiting for me that was phenobarbital. I do not take that, I take primidone and phenytoin, so I refused it. I cannot tolerate phenorbarbital, as I was given it years ago, so I do know that. I did phone the company that makes primidone, and they say there are no plans to stop making primidone, and that the reason it is not available right now is because of "global happenings" or something similiar to that. Personally that tells me nothing. I am sorry that your wife is going through such a hard time right now. Is there no way they can find some primidone for her, as it is not a medication you can stop taking right away, as you know.

Does anyone know why we cannot get primidone right now? Who really makes it? My husband and I also saw the news on CTV that night. So far I have been fortunate, but have had an EEG, which shows no seizure activity, ( which makes sense to me, since my meds control my seizures), and an MRI, which I have not had before.

I am having to trust a new neurologist, as I used to avoid them, as the one I had was NOT good at all. I pray your wife will get better, and this whole situation will be resolved soon.

Does anyone know if it is possible to have an MRI and an EEG that both say you are fine, but you really are not?

lavatera
 
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Thanks for your good thoughts lavatera. Lindas back home today after a 12 day sequester at hospital ( this having been her second stay) and hpoefully things will build back to normal soon. The Pheno prescribed to Linda after her Primidone was "backordered" did not work well with her Dilantin and the E. specialist that saw her in emergency the day after her 2 major seizures said that Pheno. is cheap, heavy and generally shipped to developing countries. Hmmmm? Sounds like Old School meds to me. I don't blame you for your dis-like of Pheno and you probably made the right choice by refusing it. PS>>> Linda's Primidone was re-established that same day in emergency so she's been back on P. for a while. Unfortunately her old set of meds alone have not sufficed. Other complications have crept in so it'll be slow but sure. She is now taking her usual two, Dilantin and Primidone + now, Clonazepam, Clobazam and Novo Paroxetine for anxiety. Fricken nuts... I've established that the company is AA Pharma out of Toronto. Is this the "company" you are referring to?
 

lavatera

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HI,

I am glad that she is back home, but yikes, she is now on more meds plus what she was on before! I can understand being on the extra one for anxiety, after all she has been through, at least temporarily.

Does the neurologist think that she can eventually be on only what she was on before? Yes, AA Pharma Inc. is the company I phoned. They were told to say it was on backorder she said. I think Primidone is made overseas, as Pfizer who my husband spoke to claims they do not make it, yet it is listed as one of their products on their web site. My neurologist who I saw two weeks ago says the meds I am on, which are the first two your wife is on,are what he calls "dinosaur meds" and wants me to switch to something else, but I think I will put up a big fight first, after hearing what you and your wife have gone through.

Why the drug companies are doing this to us, is something I will never understand, and my neurologist says that the 1960s were the dark days for epilepsy. The drug companies seem to be bringing it back, unfortunately.

Your wife is in my prayers.

lavatera
 
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Glad to hear. I thought it might be AA Pharma. Thanks for the confirmation. I laughed when I got to the "dinosaur meds" part. Cracked me up... Linda's doc. wants her to switch to newer as well but after so many years without a seizure while taking Dilantin and Primidone, she is very hesitant as well. Not to mention what she has just gone through. I think it'll be awhile before she even considers switching at this point. By the way you said you take primidone and phenytoin. What did you choose in place of primidone? I truly hope that you avoid the situation that befell Linda when she was forced to switch.
Our thoughts are with you...and all who are forced to switch.
Mike
Mike
 

lavatera

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How is your wife doing today?

Yes, I also take Dilantin and Primidone. Phenytoin is the generic of Dilantin I think, which I sometimes get. I do NOT want to switch at all, so have to wait and see what the resuts of the MRI are. The EEG did not show any seizure activity the techinician told me, which is normal for me. If the MRI is clear, my neurologist wants to start weaning me off the meds for good. I do not like that idea, as even an MRI he said cannot tell for sure, and I have heard that a person can be seizure free for up to ten years, and then start having seizures again, so do not want to take the chance. He has told my husband and I about all the side effects of the meds, but has ignored the biggest, which is having a seizure if not taking the meds. For whatever reason, he does not think that is too important. I think it is important, and have also recently been told that I have thin bones, ( I am only 54) , so having a seizure could be really bad. I was told by a different doctor that if a person slowly went off their meds under a doctors supervision, but had seizures, they could immediately go right back on them, and that would take care of everything, but after hearing what your wife has gone through, I am not so sure he is correct.

I got epilepsy from a bad hit to the left side of my brain, years ago, so they did see a scar on my brain, but they think the scar might be healed if the MRI comes back "clean", but I am not willing to take the chance, and go off my meds slowly. For whatever reason, the neurologist doesn't get it. I guess it just is not what he wants to hear, but thats too bad. He says that now in Canada if a person has been seizure free for a year, that they try to wean them off of their meds, so I pray that is not a law, as I will fight it. My husband has not forgotten all the bad sid effects of the meds, thanks to this neurologist.

I did go to a different drug store today to buy something else, that has nothing to do with epilepsy, and is over the counter, so I asked this pharmacist whom I trust, but since it is such a small pharmacy, she had not even heard of the shortage of primidone.

I hope the people who make primidone get things sorted out soon, and do not stop making it.

lavatera
 

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Yes, I also take Dilantin and Primidone. Me too! Phenytoin is the generic of Dilantin I think, which I sometimes get. I do NOT want to switch at all, so have to wait and see what the resuts of the MRI are. The EEG did not show any seizure activity the techinician told me, which is normal for me. If the MRI is clear, my neurologist wants to start weaning me off the meds for good. I do not like that idea, as even an MRI he said cannot tell for sure, and I have heard that a person can be seizure free for up to ten years, and then start having seizures again, so do not want to take the chance. He has told my husband and I about all the side effects of the meds, but has ignored the biggest, which is having a seizure if not taking the meds. For whatever reason, he does not think that is too important. I think it is important, and have also recently been told that I have thin bones, ( I am only 54) [Same here -- I'm a 54 year old man with low bone density ... that could be a result of prolonged usage of Dilantin.], so having a seizure could be really bad. I was told by a different doctor that if a person slowly went off their meds under a doctors supervision, but had seizures, they could immediately go right back on them, and that would take care of everything, but after hearing what your wife has gone through, I am not so sure he is correct.

I got epilepsy from a bad hit to the left side of my brain, years ago, so they did see a scar on my brain, but they think the scar might be healed if the MRI comes back "clean", but I am not willing to take the chance, and go off my meds slowly. For whatever reason, the neurologist doesn't get it. I guess it just is not what he wants to hear, but thats too bad. He says that now in Canada if a person has been seizure free for a year, that they try to wean them off of their meds, so I pray that is not a law, as I will fight it. My husband has not forgotten all the bad sid effects of the meds, thanks to this neurologist.

I did go to a different drug store today to buy something else, that has nothing to do with epilepsy, and is over the counter, so I asked this pharmacist whom I trust, but since it is such a small pharmacy, she had not even heard of the shortage of primidone.

I hope the people who make primidone get things sorted out soon, and do not stop making it.

lavatera
Re getting off meds:
I had my brain removed in 2003. I was looking forward to being med-free. After a while I became a little careless about my medications and even ran out of primidone for a few days. That was after missing quite a few doses before hand.
The end result was me reaching for the bedroom door one morning and then waking up at the bottom of the basement stairs.
The doc figures that they must have missed a few cells.:mad:

I'd be VERY leery of getting of any meds. I sure hope your neurologist will keep a close watch on you when it comes to any changes!

Dominus tecum, Reg.
 

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Hi.
I just stumbled across this -- http://www.medlink.com/medlinkcontent.asp

Originally released January 28, 2003; last updated January 17, 2011; expires January 17, 2014

The manufacturer of primidone has announced the discontinuation of this drug. Primidone was withdrawn from the market in the Netherlands in 2004 but was available for some time on a limited basis (de Haan et al 2003). In the United Kingdom, the drug will be available until an alternative source of manufacture is found.
This doesn't appear to be up to date, but I thought I'd post the link in case it gets updated with more news.

- Reg.
 
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lavatera

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Thank you for the update. I wonder if another manufacturer has been found.

lavatera
 

lavatera

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Thank you, I will be phoning epilepsy.ca in the morning, as my neurologists appointment is this week.

Have a good day, everyone,

lavatera
 
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