Since my neurologist retired and I found a new one, my pharmacy is not accepting his order for the buprenorphine because he's saying it's for RLS and the pharmacy is saying something about it is for pain but since this new neurologist isn't a pain doctor, he said he can't prescribe it that way even though he has already done it for the past year!! I don't know what to do and don't understand why there hasn't been a problem until now. Do you have any suggestions for me? I can't possibly go on without buprenorphine
Buprenorphine...help with prescriptio... - Restless Legs Syn...
Buprenorphine...help with prescription please!!
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LanaCSR
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Try another pharmacy. I don't understand that at all since neurologists do prescribe it for pain.
I know this makes no sense! Thank you for the advice. I've sent an email to the neurologist to see what he says. Fingers crossed.
🤞
Oh lordie,This is getting critical now.
We are all doing so well on Buprenorphine, yet doctors are determined to let us suffer.
It's outrageous.
Where are you Lana? UK, USA?
I am in the United States. My neurologist said he is not comfortable prescribing "opioids"...🙄 So he has referred me to a pain management doctor to prescribe the buprenorphine for me. This is ridiculous! I don't feel like buprenorphine should even be called an opioid. It doesn't act like opioids. The approximate five years I've been on it I've never needed to increase the dose. But I can't do without it. It is literally the only medicine that keeps my RLS at bay. I don't know what I will do if I am not able to get it anymore. 😭
It acts exactly like an opioid BUT RLS is different to pain, so we don't develop tolerance, where we have to increase the dose to achieve the same effect.Dr Winkelman's Opioid reigister at Massachussetts Hospital is proving thos point.
Show the Opioid register to your doctors.
Sadly, the Oxycontin scandal affects us sll.
some RLS folk do suffer pain so could you claim this. The disturbances we all suffer are on a par with suffering pain and the less sleep we get the more distressed we become. Could you try going along this line. I have back pain as well as RLS and when Gp was against prescribing BUP I pointed out I needed pain killer for back pain and sciatica. She could not argue against BUP prescribing any longer although she does not like it. Just a thought - good wishes 👍
This opioid scare in USA and Canada particularly does highlight some serious problems with fentanyl and all opioids…BUT it is also encouraging already present inappropriate opioid bias… It has now travelled across the Atlantic and is becoming increasingly ridiculously problematic for us RLS guys…😔😔😔
OPIOID BIAS…
‘Zacharoff’……There is massive ‘Stigma’ surrounding opioids……pain management harms patients and feeds biases
This is very relevant to RLS and is having a significant negative effect on RLS management today when opioids are a very useful and important tool of treatment for many sufferers. And this bias has been shown to be misplaced when considering the Opioid Registry which collects data from RLS sufferers and are taking a prescribed opioid for RLS demonstating that 94% remain ion the same dose after 5 years , and most are on relatively low dosage anyway. Thus far it indicates that there is no addictive behaviour, no tolerance, no augmentation .
There needs to be a serious rethinking of opioids in RLS with suitable attention and care.
Zacharoff suggested that considerable stigma has been placed around opioid use in any capacity, even if the patient is experiencing chronic pain and genuinely needs medication to manage it.
“There are people training young physicians to think ‘red flag,’” he said. “They are being taught to just assume the patient is drug seeking right off the bat.”
In addition, medical schools do not teach students about pain, and pain management, thoroughly…
“The majority of medical schools still do not have more than an elective in pain management,”
Of further concern is the issue of bias, and how patients who fall into some demographic groups are assumed to be engaging in drug-seeking behavior, whereas other patients are not, Zacharoff said.
“We play the blame game,” he said. “It is possible that we stigmatize, that we profile people.”
The fear of addictive behaviours has impacted the ability of physicians to empathize with patients. This, in turn, disrupts the trust that should be present in the doctor-patient relationship.
“We are worried about what they are going to do, and they are worried about what we are going to say,”
Regulatory issues surrounding opioid prescribing have complicated daily practice for many clinicians, he added. Meanwhile, many pain assessment scales — such as rating it from 0 to 10 — are “completely worthless” due to the personal nature of pain for each patient,
As regulators and researchers work out these issues, Zacharoff suggested that individual clinicians can improve their ability to manage pain simply by examining the biases they may be bringing to the clinic each day.
“We are all stocked with biases,” he said, noting that patients are often prejudged based on race, gender, age, socioeconomic status, educational level, substance use history or diagnosis.
“What can we do about it? We need to just be aware of it,” Zacharoff said. ‘‘Look in the mirror!’’
…Several types of biases for rheumatologists to consider.
(i)“anchoring” is to identify one piece of information about a patient and “hang everything on it,” he said.
(ii)“premature closure,” a bias where a clinician will accept the first diagnosis and look no further.
(iii) “zebra retreat”.”
(iv)“blindspotting” is when a clinician fails to see their own biases.
Zacharoff urged rheumatologists to identify who or what makes them feel uncomfortable and figure out why. This may prevent incorrect assumptions about patients in particular demographic groups.
“We need to look at these biases and stigmas and face them head on,” Zacharoff said. “Stigma is alive and well in health care today. Stigma can be a barrier to treatment of painful conditions.
REF: healio.com/news/rheumatolog...
Great background explanation. We can all show this to our doctors.Thanks Kakally.
We can show our docs but the serious bias is now so strong that I think things are going to get worse for some time before getting any better 😔
one of the problems with all restricted pain meds is that doctors and pharmacists are being sued for prescribing them, filling them rx's. And in some cases the DEA is raiding practices, charging dr's...and they are losing their licenses....and not every witness is telling the truth..so docs and pharmacists have their backs to the wall...i happen to know this because it happened to a pain doc that we know very well..
Thank you for that. It is a dire state of affairs for patients and many docs and pharmacists. That together with the wrong and poor knowledge of medical personnel due to bad education due to greedy large Pharma back in the early noughties ,(and the insurance companies refusing to allow an iron panel blood test for RLS patients) which has persisted until today in the majority of the U.K. and other countries too ….
i'm pretty much out of options. My RLS is expressed as both the agitation and severe pain. My doc does not prescribe methadone, which is about my only option. I am lucky though, that we are only a couple of hours from the cleveland clinic...i have an appt with a neurologist there in 2 weeks and we are bringing dr winkleman's papers with us, just in case the dr does not know of them..but surely he will..people who do not have this condition have no idea. They mean well, but their suggestions and wishes for us just really show me how they do not understand the level of suffering. I was put on a heart medication that made it all so much worse that i honestly was contemplating suicide. Luckily my cardiologist knows me well and was able to instantly switch me to another medication. This condition is utter hell, isn't it?
OMG this just kills me and I'm terrified that even switching to a pain doctor (because they are the only ones who can prescribe my buprenorphine) what if this pain doctor denies the prescription? And even if he agrees to prescribe it, it's going to be more costly because I will have urine drug screens and will probably have to see the doctor every month. I am just sick about this. And how do I convince him to write the prescription for pain (which is what the pharmacy requires) when he knows it's for RLS?
i wish i could offer you a suggestion. I well-remember how the whole pain scale was created and standard of care for pain patients. The sad thing is that often the wrong people have been blamed and sued and now we are right back where we were in 1992, with the people who really need the medication cannot get it. I sure remember as a nurse in the 70's, how some of my cancer patients were literally screaming with pain and there was nothing we could give them. It was a terrible time, and it seems like we are going back there.
That is horrible!! 😭😭😭
For all of us 😞
Hi collageartist52
I’m so sorry you are feeling that way.
It does start to get so desperate when we’ve already felt at the end of our tether numerous times in the past, but then another drug or thing to try comes along and we feel hopeful again .
I really hope you get the methadone that you so clearly need.
I had nearly 5 years of augmentation following low dose rotigotine and struggling with doctors who treated me so poorly and left me humiliated. (I am a medical doctor myself and was just shocked at the manner that I and so many of us have been treated).
I was very fortunate to find intravenous iron treatment after fighting and fighting to get it. It has helped me a lot, but I still require other medication as I’m sure my dopamine receptors have been at least partially destroyed by the DAs I took. I too have tried almost every drug and alternative drug, food, behaviour etc .
Tramadol really helps the best !! but I do get what I’m sure is early augmentation every ~9 months and I have to stop it for a horrible week or so to let my body reset itself. Low dose buprenorphine patches do add that bit more but also make me feel like a vegetable, so sleepy .
I really would like to try and only take a very low dose of methadone but it is very difficult to get in the U.K. . I’ve been refused it by 3 separate clinics and made to feel like a drug seeking crazy woman.
I think I am going to have to go begging again in the next few years if my situation worsens.
I really hope for all of us that suitable clever research comes up with one or some other magic bullets . Plus the use of I-v iron does need to be recognised, tested for and used firstline. It could significantly help a good percentage of us soooo easily and safely.
I wish you the very best
IV iron did not help me at all, even when it brought me over 400.
thank you for your kind reply kakally. I hear you. My husband is a retired physician and we are in a small community. So i have been lucky to be believed for the most part...however, when we went to a large medical center...we were nobodies and the care was terrible...that is the sad fact for all patients these days. I don't know why these uncaring people even go into medicine.
I’m in the USA too and that’s what I’ve been taking for about 3yrs. I’ve always had that fear of losing my meds because of some one else’s decision,because all of a sudden my pharmacist is having issues with it.why do these people get off on deciding to take control over others, especially when they don’t have a clue about what that does to us with this disease and it should be wrong , but not anymore it seems. I pray it works out for you.💜
they are losing their licenses and being treated like they are pill-mills...so then they just quit prescribing.. it's a terrible situation for both docs and patients.
It is not the place of the pharmacist to deny your prescription. As long as your insurance approved it, they have no legal standing to withhold it.
I wish that that were true. There's one pharmacist that refuses to fill my methadone script at my local Smith's. Thank goodness the head pharmacist there is willing. But she says that by law, no pharmacist has to dispense opioids if they're unwilling. Apparently, the DEA has doctors and dispensers walking on eggshells. There is no organization that relishes controlling others more than does the DEA.
My mistake, you are right. I had trouble getting gabapentin refilled recently, as it is also classified as a controlled substance. It took a couple phone calls and I was forced to listen to several lectures on morality before they admitted that one of their pharmacists took it upon himself to dictate my care. I'm taking it at less than the prescribed dose but he thought he knew best.
Yup. It is routine for us RLS patients to be stigmatized as if we were drug-seeking substance abusers. Who knows how long it will be before the medical profession understands that our low-dose opioid prescriptions do not fit their fear-filled stereotypes.
You can try printing out the Mayo Clinic's updated algorhythm on the use of low-dose opioids for treatment of RLS:
mayoclinicproceedings.org/a...
and see whether your doctors are suseptible to education on this condition. They no doubt have never seen the latest research. Just pray that they are willing to learn.
Or try the original study - it has the phrase "the appropriate use of opioids" in the title:
mayoclinicproceedings.org/a...
Best of luck!
Thank you so much!
I’m also in the U.S. and my GP knew NOTHING about getting off of Ropinarole yet alone the doses afterwards so I had to ask if she would refer me to a Neurologist but couldn’t get an appointment for 6 months, so still waiting! I figured nobody in the U.S. would even consider prescribing an opioid. I’m aiming towards Gabapentin at the moment and in the process of changing doctors, but no guarantees on how they will handle the RLS. It shouldn’t be this difficult for all of us to get the appropriate treatment.
Hi I'm so sorry to hear about what you are going through...and other's! I , like you, feel that I can't do without Buprenorphine but I have a skin allergy to the adhesive on the patch. I'm on 20 mcg. Soooo......I asked our Pain Clinic ( who , as I have already written here, misdiagnosed my lung cancer !) if I could change from the patch to tablet's. I sent a photo to them of the red rash and swelling, saw my Dr. last Thursday who said that he couldn't prescribe Buprenorphine tablet's but the Pain Clinic could. Later that afternoon I received an email from the Specialist Nurse at the Pain Clinic and have been refused the tablet's! Of course, they are all on holiday for Easter! I have never met the Nurse or the new Dr. at the Pain Clinic! My Dr. knows me well so knows that I wouldn't abuse the tablet's but I have told all of them that I cannot go back to being up all night with my lower leg's in agony and jerking. They won't read what I give them about RLS . I broke down at the Dr.s and I never do that but....! The medical profession here have left me a wreck with half a life! I live in Scotland. The reaction to the patch is , apparently, inflammation of the blood vessels but also because 3 of the sight's are swelling, showing signs of infection. I spoke to the Receptionist at our Surgery and asked whether my blood test's from 10 day's previously, were O.K. She said they were fine. I asked the Dr. and my Ferritin level has gone back down to 33 so I've been put on Ferrous sulphate pill's for however long I am on this planet! My Thyroid level is low , Folic Acid and there were about 6 thing's red flagged! My G.P. told me that funding is being cut to all Surgeries and more !
Jools and other's have been so wonderful giving me advice and support, more than any medic's here and I am so grateful. Regarding Buprenorphine, I am so scared that they are now going to stop this as they have suggested other pill's. I can't take Tramadol. I'm so tired with fighting them and truly believe that the British and Scottish Government's are trying to privatise the NHS. Stopping Opioid treatment is ludicrous if we are being monitored and it's the only thing that works.
Good luck. Please let us know how you get on and take care.
Oh, nooooo! That is HORRIBLE!! And now I am terrified that this pain doctor I have been referred to may not give me the buprenorphine pills I currently take and have taken for about five years now without any change in the amount I have been taking over the entire time. I have tried everything out there, and buprenorphine is literally the only thing that helps me.
Hi Lana. I'm so sorry! I didn't mean to upset you. You say you are in the States and hopefully your Pain Dr. will be sympathetic. All Dr.s have different attitudes and please bear in mind that they are allowing me to stay on the patches and that is because my G.P. is fighting for me. The rash is worrying but I will just have to cope till I get something sorted out! I asked him to contact a Neurologist at our hospital and he said that he would. I saw the Neurologist year's ago because I have an essential tremor in my right hand and the Neurologist was so thorough and kind. I hope that the year's haven't worn him down!!I know exactly how you feel but I'm not giving up the fight and I'm going to flood all the Surgeries here with RLS information. Please listen to the wonderful advice from people here and we are ALL with you. If you need back up then you can P.M. me and I will try to help. It's a really good idea to print information about RLS and give it to your Dr. Please don't think that you are on your own and accept the advice that people like Jools, Sue, and all the other's because without them I would never have heard of Buprenorphine and would still be up every night in agony and extremely depressed! Take care please and don't give up the fight! Scotland NHS here is very different to other places and the Mayo Clinic have wonderful information so have a Google! Don't forget that you have this Forum! xx
Hello, Lana! I do have a suggestion for you, if you are unable to get the buprenorphine you need. Do you live in a state where kratom is legal? Kratom is, like buprenorphine, a partial agonist at the mu opioid receptor. I don’t know if you know anything at all about it—it is a leaf from a tropical plant grown in southern Asia. It works very well for RLS. There is naturally a concern about buying and consuming an unregulated product. But there is a wonderful organization called the American Kratom Association, that works to keep kratom legal, and to promote the SAFE availability and distribution of this plant.
The AKA has set up a certification program for companies that sell kratom. They must prove that their product is lab tested for purity, and then they are listed on the AKA site as certified. Never buy kratom from a shop on the street! Purchase from one of the online purveyors certified by the AKA.
I have been taking kratom in a controlled, careful manner for about 6 or 7 years now. I found the right dose for me, and have not needed to change that dose for years. It is a life saver! And the critical piece is that I do not need to beg doctors to prescribe it for me.
I believe kratom is illegal in Europe, unfortunately, and also in 5 or 6 states in the US.
A few years ago, I attended a webinar where Dr Winkleman spoke about the use of opioids for RLS. I submitted a question about kratom, and he impatiently snapped, “ No! Why would you want to do that? Take a prescribed opioid such as methadone.” Well, this thread illustrates exactly why I would want to do that. Unfortunately, we all can’t see Dr Winkelman for our prescriptions.
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