A woman in rural BC writes :

You’ve asked for stories, and I’m needing to vent, so here goes…

I finally landed on the right drug at the right dosage after decades of struggling with depression. Bupropion XL 300mg turned my life around, and with my 60^th birthday looming, I was actually looking forward to the rest of my life. I had given up on antidepressants because they just seemed to make things worse.

I’ve also struggled most of my life with my weight and have been growing increasingly desperate about it. I heard about a new weight-loss drug called Contrave, a combination of the generic drugs bupropion (an antidepressant) and naltrexone (used in drug rehab), which sounded both promising and safe. While Contrave had been available in the US for a few years, it was not yet available in Canada, but my doctor was willing to prescribe these two generic drugs in dosages that approximated Contrave.

As it turned out, this didn’t help a whole lot with my weight, but what a difference it made to my energy and mood! I was ME again!

I had tried bupropion before, but only 150mg, and I had given up on it because I experienced mild side effects and no real therapeutic effects. Just add it to the long list of antidepressants I’ve tried. But at 300mg (and perhaps in combination with the naltrexone), it was life-saving. I just needed to take more of it.
So, I was pretty upset when I went for a refill at the end of October to find that this drug that I was stable on wasn’t available. That is, the extended release (XL) form wasn’t, so instead the pharmacist gave me the sustained release (SR) form with the instructions to take 150mg twice a day instead of a single dose of 300mg. Well, twice a day for me is in the morning when I get up and then just before bed.

It took me several weeks before I figured out that the onset of severe sleep problems coincided with this change in drug regimen. I called my pharmacist, who said it definitely was the drug and that he should have told me not to take it before bed.

Well, the doses are supposed to be at a minimum 8 hours apart, but even taking the second dose in the afternoon affected my sleep – it was still too late. So I am only able to take 150mg in the morning, half the dose I need. If I take the second dose, I don’t sleep.

I lost the entire month of November to lack of sleep because I was literally up all night most days of the month. So now I’m on half the dose of bupropion that I need, and while my sleep is better, I can feel my energy and mood slipping downward. I AM SO ANGRY! Finally, I was getting my life together, and now this? And no explanation? And will it EVER be available again?? I need a refill, and it looks like I’ll be getting the SR again.

So that’s my story. Do the pharmaceutical companies have no ethical standards???

—-

Update, Christmas Day:

In consultation with my pharmacist, I am now taking the second dose of bupropion 5 or 6 hours (i.e., less than 8 hours) after the first dose and have not experienced any adverse effects. I need to take the first dose as soon as I get up in the morning, and as long as I remember to take the second dose on time (cell phone reminders are very helpful!), I’m managing. I’ve now been on the full therapeutic dose for a couple of weeks and am beginning to feel decent again. But I feel like I’ve lost two months of my life, and I really resent having to be so vigilant about the timing of my meds when it shouldn’t be necessary.

Well, it has happened again. See Story 27 from 2012 and Story 48 below from June 2018.

My 3-month supply of beta blocker for blood pressure (Teva’s acebutolol)  can’t be filled. On 1 October, the pharmacist gave me a one-week supply — and now I am almost out.

Stopping suddenly is dangerous (heart attacks).

I just called. It’s still “on back order,” and no new orders can be placed. The pharmacist says he will call around to other pharmacies.

But get this! —

I just checked the government’s official website about drug shortages again. https://www.drugshortagescanada.ca

While my problem started 1 October, the company did not report this shortage until 11 October (it had another shortage last July, as per Story 48 below). Other companies that make it also have shortages–Sanis, Apotex, Pro Doc. But two other companies have discontinued it completely: Mylan and Sanofi-Aventis.

So much for advance reporting.

What is going on?

This is a very old drug. Beta-blockers (among other drugs) won the Nobel Prize in 1988.

If I die, blame drug shortage and tell someone.

Update 23 October…problem continues!

No Acebutolol is available till December.

My poor pharmacist has spent a LOT of time phoning around, and twice I have been back to pick up sufficient medication for 1 week each time.

My doctor has decided to switch me to a different beta blocker, which I will start today.

Will we ever see acebutolol again? Stay tuned.

Update 8 December

So the pharmacist phoned to say the rest of my prescription was “in,” bought and paid for more than two months ago, although the Health Canada website suggests that the problem was resolved a month ago (5 November for Apotex and 16 November for ProDoc. Teva is still in short supply.)

In other words, “resolved” does not mean available.

Now I have TWO beta blocker prescriptions. Which one should I take? Another visit to the doctor. More time and expense for me and the system.

Does the shortage of a beta-blocker come with a warning to patients or their doctors? Certainly none was given to me.

Does providing prescription for TWO beta blockers not generate a warning – or cause the pharmacist to question the medics about what should be done?  Nothing was said about that in the phone call.

I’m lucky that I have an MD — and although I don’t know what to do, I do know that I should not take two at the same time, nor should I just quit.

Worse it would be for someone who just “went without” for two months, letting their blood pressure get out of control…risking heart attack and stroke.

Same thing is happening everywhere — see this May 2019 story from USA

Ivan Oransky, when drug shortages hit home for a doctor journalist, Medscape blog, 1 May 2019.

A woman in Ontario writes….

I have been taking Sectral, a Beta Blocker, since the late 90s and it has worked very well for me. I recently had quite an experience getting my prescription filled. I started with the [local] Costco where I usually fill my prescriptions and the associate said that they are having a problem getting the medicine and suggested I try another pharmacy chain. I went to Rexall where I had the same problem – Sectral is not available. I ended up at a … Shoppers Drug Mart which happened to have a bottle in stock. I filled out paper work, Costco faxed over my prescription, and two hours later I was home with the bottle of pills in my hand.

I have googled the pharmaceutical company who makes Sectral (Aventis) and will call them next week to see if I can get more information about the
shortage.

I am upset that I may have to switch to a new Beta Blocker as this will create a host of issues for me. I have tried other versions of Sectral which do not work for me. I can’t understand why there is a shortage of this medicine after all these years – end of patent? or lack of clientele?

My story is just one in the overall drug shortage problems that you have encountered, but I would appreciate your letting me know if you reach any conclusion, or if you have any other person whom I should write to.

Webmaster comment: we’ve seen this problem before (See Story 27). She should write to her MP and her MPP!! and send them the link to our recent study.

https://www.cdhowe.org/public-policy-research/assessing-canada’s-drug-shortage-problem

I’d been on the full therapeutic dose of “luvox” for many years and was shocked to learn in December of 2017 it was discontinued.  I then learned after some minor internet research that this has occurred with other medications–including those for epilepsy.

Since the loss of this medication I have suffered many desperate bouts of suicidal thinking despite utilizing my tools for relief which include singing with a choir, artwork, and many walks.  I feel shame and guilt constantly and ruminate constantly and am not surprised to learn that the more a person tries to push away intrusive thoughts they return with a vengeance.

Two drugs were attempted as replacements, serataline and mirtazapine  bring with them intolerable side-effects.  I suspect there must be many other Canadians dealing with this sudden withdrawal and the shock of learning about the capricious behaviour of pharmaceutical companies.

I just wanted to advise you of my specific experience and hope to learn more about other citizens suffering the consequences of the above-mentioned experience.

A woman from Calgary writes:

I personally have been impacted by a prescription drug shortage. In 2010, I was diagnosed with vestibular migraines, characterized by 24/7 severe and chronic vertigo. When the vertigo was most acute I could not go into stores or areas that were visually complex, I had trouble walking, and I had to rely upon others to do many tasks. I was diagnosed by a neurologist, and we tried several medications to treat the disorder without any success.

Finally, in 2011, valproic acid (an anticonvulsant) produced by Mylan helped partially control the symptoms – at least I got some relief and I could finally stand up and walk without falling over. But in 2012, my pharmacist informed me that Mylan would not be producing valproic acid and this shortage could last a year.

I had difficulty switching between brands (I got ill) so I had to remain on the Mylan brand that I was initially started on. The supply of valproic acid made by other pharmaceutical companies at that time was also very low so I had to consult with my neurologist and find a replacement medication. As I had a partial response with an anticonvulsant, he selected topiramate.

Switching medications was extremely difficult but the response to topiramate was worth it. It truly has been a life saving medication for me. I have had a 100 percent response to the medication. Given the severity of my symptoms I will need to be on this medication for life.

I never thought about drug shortages again until recently. My brother had been taking fluvoxamine that was prescribed by a psychiatrist to treat social anxiety disorder and obsessive compulsive disorder. Presently there is no fluvoxamine available in our city (Calgary). So his doctor had to decide on a different medication. I learned that there is also a shortage of Lithium.

The other day I was discussing my brother’s situation with my pharmacist and asked him if I should be worried about topiramate availability in Canada. I was quite surprised and rather upset when he answered “yes” – that topiramate is expected to be in short supply in the future. Without that medication I will be not be able to function. I am extremely worried about this situation and angry that it is happening and we don’t know why.

A 70 year-old reader from Toronto area writes:

I have been disabled by spinal cord injury and Multiple Sclerosis pain since 2006 and have Multiple Chemical Sensitivity.  I retired early because of this pain from the national office of a large health charity where I worked for over 25 years in senior positions in education and research. I also participated in consultations and collaborations with the federal government and other health charities and health professional organizations.

For years, I’ve been a patient at St Michael’s Hospital’s Pain and MS Clinics in Toronto under whose direction I’ve tried all available other pain control options.  They either don’t work for me, I have allergic reactions, or the side effects outweigh the value. The only pain medication I can tolerate for my severe MS and spinal cord injury pain contains nabilone and I take a high dose.  Luckily for me, it is non-addictive and unlike many medications, appears to have no dangerous side effects. Frankly, if I don’t have this medication, the pain will be unbearable.

However, it’s been in short supply since June 2017.  I assumed at first this was a glitch in the system but then realized the system is the glitch.

In June, 2017, my local independent pharmacist told me he could not fill my prescription because his supplier was out-of-stock but he knew Shopper’s Drug Mart had a supply. So I take my new 3 month prescription from St Mike’s Pain Clinic to Shopper’s.  My drug plan only permits one month supply at a time but for two months, Shopper supplies.  Then, when I need the third month in August, consternation from Shopper’s – their distributor cannot supply either the brand name or generic form of the drug until January, 2018.  However, that same local independent drug store I normally use now can get a quantity of the drug from its supplier so I had to get a brand new prescription from St. Mike’s.  The local drug store was able to provide the medication for three months, but then their distributor ran out of stock.  Meanwhile, through family members (not health professionals), I’d learned of another drug store that had a supply and St Mike’s sent a prescription there – however, they were now out-of-stock so they could only give me less than 2 weeks of supply.  I didn’t have enough to last until January so I reduced my daily dose to make them last longer but reverted back to my usual dose when I realized my savings only last a few days and meanwhile the pain increase was significant and my stress was affecting my family.

A new just-opened pharmacy we found had some inventory and was able to get me more when the Ontario government released a limited inventory of a small dose previously delisted.

The message from all of the drugstore staff I spoke to from June to December 2017 was that their suppliers said that the shortage would last until January, 2018 and their only advice was to call every drug store in Toronto to see if they have any stock left.  Unfortunately, most of the stores I found who had any at all were holding back supplies for their regular patients.

All of these pharmacists had no idea why the specific drug was in short supply but eventually I learned that there was a worldwide shortage of the active ingredient. By the end of December, 2017, various manufacturers had received approval from Health Canada for a substitute source (email communications) but one respondent honestly commented that no one could guarantee future shortages would not occur.