Methadone on backorder for nearly a month!

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Had_it_50+years
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Location: Los Angeles

Methadone on backorder for nearly a month!

Post by Had_it_50+years »

Dr. Buchfurher, sent in my prescription for a 30-day supply of 10mg/day Methadone to my pharmacy 25 days ago, but it remains unfilled due to a backorder from the manufacturer, Mallinckrodt. The pharmacist has assured me that my order will be filled as soon as the medication is received. Typically, they refill it after 28 days, so I had an emergency supply. To extend this supply, I've reduced my dosage to 5mg/day, but I'm experiencing bothersome RLS symptoms. Concerned about depleting my supply, I reached out to Dr. B, who kindly prescribed Pramipexole (generic Mirapex), but only a 14-pill supply, to be taken temporarily. My Methadone will run out by the end of this week, and I have the Pramipexole as a backup. Having suffered from RLS for decades, I've been prescribed Mirapex and nearly all other dopamine agonists, which eventually required increased dosages and caused intolerable side effects. This led me to see Dr. B, who prescribed Methadone, which has been more effective than any other treatment. My regular pharmacy, a major chain, has filled my Methadone prescriptions consistently for over four years, accepting cash payments without hesitation. I am reluctant to disrupt the excellent service I've received from my current pharmacy and am hesitant to shop around for fear of being labeled a "drug seeker" by pharmacies. I wonder if others have faced such long waits for Methadone due to back-orders, and if pharmacies in California maintain a blacklist of "drug seekers."

ViewsAskew
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Re: Methadone on backorder for nearly a month!

Post by ViewsAskew »

I just moved to Sacramento from So Cal (Orange Country). They said there was a shortage when I was here in October. That seems suspect when I have had NO issues in So Cal. I feel for you and hope they resolve this quickly. My script is due today and Dr B just called it in. It will be interesting to see what happens. I will be non-functional without it and willing to drive at least an hour in any direction, if needed.

A Walgreens pharmacist told me that in CA the pharmacies can now forward scheduled prescriptions if they are out of it - that should help both of us, if that is needed.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
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Re: Methadone on backorder for nearly a month!

Post by Rustsmith »

I had Walgreens transfer an opioid prescription to another pharmacy several years ago. The only problem was that the second pharmacy was also short and could only partially fill my prescription. They said that once they start filling a prescription, they cannot transfer back for a partial fill.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Re: Methadone on backorder for nearly a month!

Post by ViewsAskew »

Well, I am in the same boat. The pharmacist at the closest Walgreens won't do it and the pharmacies I've called so far will not take on a new customer because of the shortage. I am not sure of next steps, but I'm almost out. I've asked Dr B's office about what next steps are if no one will fill the script, but no reply as of yet.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Methadone on backorder for nearly a month!

Post by ViewsAskew »

The saga continues for me. I've called the Walgreens corp office to complain and wanted a district pharmacy manager to call me. They said it would be in 3 days. I also sent a written complaint. Next, I am looking at local media to see if I can get anyone interested in this story. There must be many people in this situation. I'd love to find out if this "shortage" is real and find out why.

I did find out from one pharmacist why they are refusing to fill opioids for people. The FDA apparently held the pharmacies liable for filling scripts and not asking questions - CVS and Walgreens paid a huge fine a couple years ago. Walgreens policy is to let each pharmacist decide whether to take on the risk. They can simply say no. Doesn't matter what the doctor says. Talk about crazy.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Methadone on backorder for nearly a month!

Post by Rustsmith »

There is a portal on the FDA drug shortage website for the public to report a new shortage. The website is
Methadone is not on the FDA shortage list, but it was last updated at the end of March.

As for Walgreens and CVS, that is part of the reason why I no longer do business with them. There is a Safeway store across the street that has a pharmacy and over the last four years, I developed a first name relationship with the pharmacy manager/pharmacist.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Methadone on backorder for nearly a month!

Post by ViewsAskew »

I'd looked at that list, too, Steve - I was VERY annoyed that there is no shortage. The names I have called them in my midnight rants, lol.

I have called so many pharmacies - none are willing to take a new patient. I really am not sure what to do.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Had_it_50+years
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Joined: Fri Jan 26, 2024 3:00 pm
Location: Los Angeles

Re: Methadone on backorder for nearly a month!

Post by Had_it_50+years »

Thanks so much for all your replies! I eventually ran out of Methadone a week ago and began taking the 0.25mg daily dose of Mirapex Dr. B prescribed as a temporary band-aid solution. Since starting the Mirapex, I'm now experiencing the worst RLS of my life, only sleeping an average of 3 hours per 24-hour period, sometimes only in short segments of 1 or 2 hours each. I messaged Dr. B and he replied within an hour, saying he didn't want to prescribe any more Mirapex because if I were to take it too long, it could cause me to need a larger dose of Methadone thereafter. He said if I can't find any Methadone, we should consider switching to Suboxone, which is usually easier to obtain. He told me to make a video appointment with him asap, which I did. Gladly, I was able to make an appointment for Thursday morning next week.

I looked up Suboxone and found there could be an issue with it in my circumstance. I see that one of the primary warnings about Suboxone is that it often causes numerous problems with the skin inside one's mouth, including redness, numbness, lesions, and more. I have a serious rare autoimmune disease which, in the past, has viciously attacked the skin inside the mouth, with the possibility of also damaging the skin covering my eyes, but is now well controlled, so I'd rather not take an RLS drug with side effects that could mimic the symptoms of my skin disease. There is a possibility that it could be difficult for my specialist to determine if any skin problems in my mouth are caused by the disease or the Suboxone. I'd be better off finding myself a steady supply of Methadone. I will ask Suboxone users elsewhere on this board about any skin problems in the mouth.

Anyway, with copies of Dr. B's Mayo Clinic RLS research papers and some of my Dr. B medical records in hand, I began a Methadone search. Yesterday, very understanding and helpful pharmacist at an independent pharmacy took an interest in helping me. He said he can't get Methadone, but he didn't say why. Perhaps he's not licensed to dispense it. But he's working on making arrangements for another independent pharmacy nearby, people he knows well, to supply it. Perhaps they have some on hand or can get it. He said he'd call me by Monday.

So today, I'm back on here and see the replies (again, thanks so much!) that apparently there is Methadone shortage, at least in some areas. It looks like I may have to start taking Suboxone, or something else. I'll discuss it with Dr. B. on Thursday and will definitely let you all know the outcome.

Rustsmith
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Re: Methadone on backorder for nearly a month!

Post by Rustsmith »

Although Suboxone is the current second best opioid for RLS behind methadone, there are a number of other options. We have quite a few members who take oxycondone or oxycontin. The problem with the oxy meds is that they have a four to six hour half life, so you need to take another dose half way through the night.

Another option that doesn't get used very much is tramadol ER. Like methadone and suboxone, this is a 1/day med. There is a very small chance that it can cause augmentation (the only non-DA that does this). The two other issues with tramadol are cost (my co-pay was $150/month vs $5 for methadone) and the fact that it is also an anti-depressant. Most doctors are not familiar with the anti-depressant property. When I was taking it, my emotions become very flat after about two months (no joy or depression, just nothing). This also means that you must taper the dose when you stop in order to avoid getting Anti-Depressant Withdrawal Syndrome, which is very much like untreated PTSD except that it only lasts for about three months. Fortunately, tapering avoids this problem assuming that your doctor is aware of the issue.

Finally, another other opioid will treat RLS, including morphine. The problem is that most of them have a short half life.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Had_it_50+years
Posts: 4
Joined: Fri Jan 26, 2024 3:00 pm
Location: Los Angeles

Re: Methadone on backorder for nearly a month!

Post by Had_it_50+years »

Thanks for this valuable info, Moderator Rustsmith! It is so appreciated!

In the past couple of hours, I read many posts on Suboxone. Someone suggested googling "tooth decay lawsuit suboxone" which returned many results. Depressing. Will discuss with Dr. B on Thursday. Will ask him if I could use it temporarily and then go back to Methadone when the shortage has clearly subsided. Methadone works like a charm for me and it's cheap.

If there's a widespread Methadone shortage now, wondering how the Methadone clinics are handling it. Perhaps they are getting all the Methadone and pharmacies are not. Worse, if Methadone clinics can't even get Methadone, which I doubt, they'd probably be getting Suboxone instead, which could trigger a downline shortage for RLS sufferers. Let's just hope not.

Last week I went on the Mallinckrodt website and found their listings for Methadone products, looking for any mention of a shortage. Didn't see anything, but of course, didn't have the credentials to order, where it may have been mentioned during the order process. I had earlier checked the national drug shortage list and found that Methadone wasn't on it, but didn't know us commoners can report shortages, so I'm going to the link you provided right now and report it. Thanks for that.

I'm on original Medicare with a separate drug plan and don't use many drugs, so the plan I selected for 2024 is tailored for that. If, during the year, you suddenly need a very expensive drug, you're out of luck. Depending on dosage, the cost of Suboxone looks to be around 3 or 4 times higher than the $23.99 retail price I've been paying for 60 5mg Methadone pills. I could easily afford the co-pay on Suboxone but don't want to start needing a drug that costs way over $100/month, so that will factor into whatever I decide to do. Will make a list of questions and concerns for my upcoming discussion with Dr. B. Thanks again!

Rustsmith
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Joined: Sat Sep 28, 2013 9:31 pm
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Re: Methadone on backorder for nearly a month!

Post by Rustsmith »

I start my methadone refill process tomorrow. I live in Colorado. I will let you know how it goes. If I remember correctly, the pharmacy can fill my prescription starting on Tuesday.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6522
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Methadone on backorder for nearly a month!

Post by Rustsmith »

I had a chance to talk with my pharmacist this morning while shopping. She checked her computer and said that she had enough methadone to full my prescription later in the week. So the shortage must be regional to California.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Had_it_50+years
Posts: 4
Joined: Fri Jan 26, 2024 3:00 pm
Location: Los Angeles

Re: Methadone on backorder for nearly a month!

Post by Had_it_50+years »

Good to hear your methadone Rx will be filled, Rustsmith. I'm still waiting to hear back from the friendly pharmacist who took an interest in helping me get some. Also plan to search for some again this afternoon. I reported the shortage to the FDA. There was an optional comment section, so I took the opportunity to tell them I depend on it for treatment of refractory restless legs syndrome and my location and the name of my pharmacy. I also mentioned that users of the online discussion board provided by the RLS Foundation have recently commented on difficulty obtaining methadone.

Wouldn't it be great if someone created an app for opioid users to share info about pharmacies/pharmacists that are okay with filling reasonable opioid prescriptions that aren't red flags, and whether they are okay with not utilizing one's drug plan and will sell for retail when the insurance refuses a pre-authorization. People suffering from RLS and chronic pain would love it. However, the gov't would probably shut down the app.

ViewsAskew
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Re: Methadone on backorder for nearly a month!

Post by ViewsAskew »

I talked to multiple helpful people today (and some not so helpful) - my guess is that it is the wholesaler and the DEA who are the issue. There is no technical shortage, but three helpful pharmacists and a tech told me the following.
1. The wholesalers who supply it can blackball a pharmacy from getting opioids - one of the pharmacists I talked to had this happen. He was very forthcoming and very helpful - even suggesting other pharmacies (of course, no luck with them). Each pharmacy is only allowed x amount of scheduled items based on how much business they do, as I understand it. When they order more than their allotment, they get redflagged. Both the DEA and the wholesaler can then hassle them and the wholesaler can refuse to allow them to have more of it.
2. The pharmacies that will prescribe it have their quota. When a new person comes along, they just don't have more. 90% of the pharmacies told me they no longer allow ANY new patients who are on opioids.
3. Because I am a patient of Walgreens, they cannot refuse me as a new patient, but they can on other grounds.
4. If you move ALL your scripts to the pharmacy, they are much more likely to fill for you, but there is no guarantee.
5. Insurance paying for it matters (mine will not). Even though it is cheap, if the insurance pays, they feel it's safer to fill it.
6. I talked to a methadone maintenance clinic just to see if that was an option. Doesn't seem likely, but it would cost $300 a month!!!!! They are providing care to addicts, of course, but how crazy is it that what they sell to me for $25 at a retail pharmacy costs $300 if someone is an addict. Yikes.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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