Ihave been on Buprenorphine for two and a half month and doing well. I was able to stop the Pramipexol. All of a sudden, the pharmacy says it can’t refill it as it doesn’t carry an indication for RLS.. They are Dayi g their pharmacist made a mistake. My doctor has spoken to them and they are demanding copies of studies and supporting evidence of the use of Buprenorphine in RLS. I pointed out the Gabapentin ans Pregabalin don’t have official indications for RLS either, but are used routinely as are opiods which Buprenorphine is( although a partial opioid Agni its.
Has anyone else encountered this? I’m in a bad spot now. I have limited options as I have now failed first and second line medications, have withdrawn from Prami and am on a co tract to not use THC, Kratom ir other substances
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teakabeagle
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Sadly, there ar NO studies of Buprenorphine for RLS. Methadone and Buprenorphine are not licensed for RLS, but, as you say, neither are gabapentin or pregabalin.
The only thing I can think of is to contact Dr Buchfuhrer, Dr Berkowski and Dr Winkelman and ask for supporting evidence. Links to their websites or emails below.
In the UK, if a doctor writes a script, the pharmacy cannot refuse on grounds it's not licensed, so this is VERY worrying for all of us on this drug.
Also contact rls.org for emergency help.
All prescribe Buprenorphine for severe, refractory RLS and the Mayo ClinicAlgorithm for RLS lists it AND the doses.
Dr Winkelman is the doctor running the
Massachussetts Opioid Study, so email him as well as the other doctors.
Thank you! I have emailed these reference to my doctor who , as of yet, has not forwarded any documents. I am also going to download a few of these I wasn’t aware of. The pharmacy was pretty rude when I mentioned I could send them several references , but they said it has to come ftom the doctor ( I am a healthcare provider and I prescribe Buprenorphine for pist op pain management so this is especially frustrating)
It is terrifying. Like you, I'm on Buprenorphine and it has been miraculous.Here in the UK, it is only licensed for getting patients off heroin. Any doctor prescribing it 'off licence' risks being struck off.
There are no UK studies and they won't accept US studies.
I am trying desperately to get a trial funded and carried out here so that Buprenorphine can be licensed for RLS.
This is an awful situation. You are in the US? Have you considered recching out to RLS.org, the US patient organisation? They are very active, especially in the realm of educating people and lobbying. Don't know what else to suggest, other than offering my sympathy.
Oh. And Look at the website of dr John Winkelman, also through and in cooperation with rls.org. He and his team have published several updates about the opioid registry (for RLS); the more recent one also mention buprenorphine and show some data on its use.
I wasn’t familiar with the second one. Thank you! I forwarded these to my doctor as the pharmacy will not accept them from me( which is a bit irritating as I am a Physicisn Asdistant and prescribe Buprenorphine for post op pain management in select patients!
That option didn’t come up and I probably would not have allowed it. If we want acceptance of this use, we have to get it authorized under the RLS diagnosis. Fortunately, my doctor went to bat for me, especially as they had slready allowed it. I did have to take Pramipexole again for the few days I had no Buprenorphine. I did not have any withdrawal. We finally did get it authorized u der the RLS diagnosis. We were assured it would no longer be an issue as my doctor provided ample evidence of its use in RLS.
I have filed a complaint with the pharmacies corporate as well as the state pharmacy governing board.
Ask them if they are going to be responsible for the medical consequences you experience when they effectively force you into unsupervised opioid withdrawal.
You may also want to call your state's pharmacy board and ask them if pharmacies are allowed to do what this pharmacist is doing.
Hi, Inkosikazi. That is exactly what happened to me. I was cut off Methadone after using it to withdraw from the DA's. Possibly the worst time of my life. I was then treated like an addict as I tried to get help for the RLS and the abrupt withdrawal-brutal all around. I was forced to use kratom (thanks to this forum for the help!), which totally saved me while waiting to get an appt. with any of the top RLS researchers around the US.
Oh my God, that had to be excruciating. It must have been days on end of agony and lack of any quality sleep for any meaningful duration. And then being treated like an addict. That happened to me at Walgreens. The pharmacist wouldn't fill the buprenorphine prescription for some technical reason. When I nonchalantly said, "Well, I guess I won't be sleeping tonight. My legs will be jumping all over the place. Yeah, I have RLS," he suddenly realized that the technical reason he gave me a few seconds prior magically resolved itself and he filled my prescription.
What regimen of Kratom did you take and what kind of Kratom? Thanks.
Thank you! And how interesting and awful that your pharmacist played with a prescription like that-wow.
Yes, that withdrawal night was the worst night of my life. I considered jumping off my balcony but I knew I just had to hang on. My sleep definitely suffered during this entire period, though I did get a few more pills the next day and then I found out about kratom from some awesome people on here. I often recommend people have it on hand as a backup, just in case, so you don't go through what I did. Some people just use it as their main solution, too, and it is SO nice to not have to rely on anyone else to get the help. You can use any of the red strains. Mitragaia is the site recommended to me (probably by DoDahMan) and they were very good and high quality with great customer service. You just start with 1/2 a teaspoon in water or juice and then add to that, as needed. It works within minutes, just like opioids do. It is basically a natural opioid, i believe, and you can get hooked on it, which I did. The reason I didn't keep using it is because it is messy/icky and I couldn't get through a full night without taking more. They do offer capsules, which I used to have in my pocket every evening so that I didn't start jonesing for it (I know-so odd, since that doesn't happen with my current Suboxone).
Hope that helps but, if not, feel free to ask whatever!
I did file a complaint with the star pharmacy board. I made mention of the fact I had to resume a medication Ihad just weaned off of to avoid a major RLS response tothe lack of Bip,
No I haven’t, but I have had a pharmacist treat me poorly for refilling opiate pain meds “ 1 day too early” - switched pharmacies & no problems. Sounds like you have a pharmacist that’s a physician wanna be.
As Joolsg says, not much research obvious for buprenorphine but this is a great article from 2011 with hefty methadone which surely should allow you to get low dose buprenorphine….
Very best of luck and LOVE
Kakally
A 10-year, longitudinal assessment of dopamine agonists and methadone in the treatment of restless legs syndrome. (2011)
Conclusions: The DA agonists appear to have a limited period of clinical utility for many patients. Severe augmentation, while not common in any 1 year, can develop even after years on the medication. Methadone, in contrast, shows neither augmentation nor major problems with continued efficacy after the first year of treatment.
Walmart in NV wouldn't fill my low-dose (10 mg/day) methadone script from Dr. B. My local Smith's grocery pharmacy has done so, but requires Dr. B to include the ICD-10 Code for RLS when ordering refills.
I am glad they do require the diagnosis code. We need to make it an accepted code for that medication. It happened with Gabapentin and Lyrica and it can happen for methadone and buprenorphine
Oh no, I hope this is a blip - although I am by no means free of RLS , my iron infusion and the Buprenorphine have made it much more manageable , I have reduced my pramipexole down from 6 x .088mg to a single tablet a day which I hope to reduce to nil over the next 2-3 weeks. How did the pharmacist know the reason for the script ? How can a pharmacist can overturn an instruction for a drug made to a GP by a Consultant in Neurology ? Does the pharmacist have the final say ?
In the US we have to include a diagnosis code for each prescription. A pharmacist can refuse an Rx for moral or religious reasons in a handful of states, but that doesn’t fit in this case. There was just one pharmacist that took exception to the original pharmacist’s decision to o allow the prescription. It was ignorance on the pharmacist’s part that she did not know of all the uses of this medication.
I have filed a complaint with the state pharmacy board and the pharmacy company.
I’m in the US and invariably deal with a lot of BS when trying to get oxy. In my little town in New Mexico the local pharmacy won’t fill it at all so I must drive an hour and a half to a bigger town where they have a national pharmacy.
When I was in Las Vegas for five months, I had to have the drug called to the national pharmacy in Los Angeles, where my son would pick it up and mail it to me. I tried having the doctors office call the prescription to about 10 different pharmacies but because of Nevada rules, they just would not fill it or it was on back order or some other such BS. I was worried every month someone was going to take it from the mailbox before I got there because I wouldn’t have been able to get a second prescription for another 30 days. Cold Turkey off oxy? No thank you.
as I travel a lot, it helps to have access to a national pharmacy, but I always run into really crappy attitudes that I don’t get when filling some thing like my statin or estrogen cream.
while I am on a rant, I will also mention that my own children are bothered that I take an opioid, and have made some cruel remarks.
While I would not wish this condition on anybody, I’m sure there is not a one of us that would give up access to these drugs to be free of this maddening condition. The medical personnel and pharmacists and family members who argue with us should thank the heavens they are not in our shoes having to wrangle For drugs that can work, but don’t always.
I will step off my soapbox now and go get a cup of coffee. I sure hope you get this worked out. Grrr!!
I agree that the stigma kept me from opiods for a long time. I stayed on Pramipexole as long as I could to avoid that. But it is time to get off the Prami and my only option now is opioids. Even though my doctor is very pro Buprenorphine for those with refractory severe RLS he does require a contract and random drug testing. He went yo bay for me for the Bup under the RLS diagnosis which I felt strongly was how it needed to be done for the purpose of getting it recognized as a viable option for RLS, but also to keep the chronic pain diagnosis code off my health records . That was not only for my discomfort around that label, but also as it makes things like getting refills, life insurance, or long term care insurance so hard to get. It should not be that way, but that’s how it is.
I hear you. I tried all the other things for a bit and went straight to what worked. I remenber when Tylenol PM worked if I took it three times a week. Even Valium worked every three nights. Those were the good ole days. I actually do have chronic pain now with some neck stuff, so the oxy kills two birds with one stone. I will make a note to ask Dr. B which diagnosis he uses, as now I'm curious.
As dancer2 remarked, her doctor prescribed it for "chronic pain". My neurologist has to prescribe it this way, as well, in order for the pharmacy to fill it. It was actually the pharmacist who informed me of that one time. My neurologist had written the diagnosis as RLS, and the pharmacist told me they can only fill it if it has the words "for chronic pain" on the script. Once he corrected that, they were able to fill it for me. I would try that first and see if you can get it filled. I think they need it to be worded that way because "we" use buprenorphine off label for RLS when it is normally only prescribed for chronic pain. Good luck and hope this helps!! P.S. I want to say I remember SueJohnson saying this one time in here, too.
It's such a different system in the UK as our GP(PCP) doesn't need to put the condition the medication is treating just name of the med and dosage. A Pharmacist would never ask what the med is being used for .However what happens in the States usually finds its way over the pond to the UK over time so its good for us to know what is happening there.
Oh, wow, that is interesting! I live in the United States. So I wasn't aware how different this was for you guys in the UK. More important, as you said, that we keep informed with each other. 🤔
In the US ICD-10 codes are required as well as the usual details. In Califirnia, we can only send prescription electronically that also entails two factor authentication. We have to be licensed with the DEA and have to be part of a program the generates a code specific to the license for any controlled substance and that goes through a monitoring program that evaluates for inconsistencies. There is also continuing education requirement to maintain your prescribing privileges
Goodness that does sound complicated! I am on opiates I just tick the box online and collect from the Pharmacy. Annually I have a medication review, it used to be with a GP but since Covid the task seems to have gone to PA.Asks how I am going on on each med ,takes bloods and blood pressure. That's it .
Are you in US? Doesn’t sound like you are in California for sure!
I have to see my Dr. Every month. Quick visit to go over the RLS/ Sleep scale, side effects, they do random drug testing as they stipulate no ETOH, THC, Kratom as they can all add to respiratory depression. I gave all of those up a long time ago, so not an issue for me. I haven’t had to do a drug screen so far but probably will at some point
We finally got past the snafu and it was authorized under the RLS once we provided the reasearch. They reassured me it would no longer be a problem. We’ll see in 30 days when it renews
I would not allow it even if suggested. If we want to get it accepted for use in RLS, we have to prescribe it for that use. I was lucky in that I still had some Pramipexole to use, and a Dr. that went to bat for me. He has a whole file of data to se d them and I got the medication under the RLS diagnosis. I also don’t want “chronic pain” diagnosis in my medical records. I already had a devil of a time getting life insurance with the RLS and depression diagnosis, add chronic pain and it will be unaffordable for me.
This is very concerning. So sorry you are going through this, teakabeagle. Just now checked my tramadol label, and it too is prescribed for "chronic pain." Been taking it 2 decades, and never noticed it before. It was prescribed by a PA in Michigan who says he isn't allowed to prescribe buprenorphine. I hope you can get this resolved very soon.
Buprenorphinee is a schefule 3 drug( Oxy, methadone Norco, Tramadol are scefule 2 and more strictly controlled. Anyone with a DEA license and con Ed in narcotic pain management can prescribe it. Maybe Michigan has specific restrictions. I’m a PA in California ( orthopedics) and I do prescribe Buprenorphine or select patients for post op pain management
I can so relate, Teakabeagle. Probably the worst part of my story is dealing with doctors and prescriptions (I'm in the US, too). I just wrote a lengthy post about some of it on Mikatrap's post about his DAWS hospitalization. I was cut off from Methadone by various doctors and treated horribly by many.
One huge thing I learned is that many doctors are fine with prescribing Suboxone (a form of BUP) but not fine with the other opioids. (Do read my other post.)
So, one option is to see if that switch would make your life a LOT easier, for now. Suboxone is a piece of tape-the lowest dose is 2 mg's and then you cut a piece of that, less than 1/4 or less than 1/2. Doctors feel it doesn't pose the same risk, due to the added naloxone.
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