I had the pleasure of seeing a NHS neurologist for the first time in over 20 years. My apprehension about is attitude toward RLS turned into a cry of joy as soon as he started speaking. I presented him with a documented simplified summary of my life with RLS, which helped the appointment immensely.
He had a trainee doctor with him and, when he spoke, he seemed to be directing his comments more to her than to me. He described Pramipexole as a medication that works until it eventually completely screws you up. He asked me to describe the symptoms, which I struggled with. After two or three minutes of me talking about coiled springs, ants and the impossibility of giving a good description, he looked at the trainee and told her how brilliantly my inability to describe the symptoms provided her with an excellent description.
For those of you that record the names of the ‘good guys’ and others that live in the UK that are looking for a good neurologist, his name is Dr Graham Lennox. You can Google his name to get more information.
Having weened myself of Pramipexole, I am now taking 350 mg pregabalin and 25 mg morphine sulphate at night and experiencing comparatively (to the last 20 years) mild symptoms. Dr Lennox has advised I swap the slow-release opioid tablets with a BuTrans buprenorphine patch in a dose of 10 mcg/h. He has advised increasing to 20 mcg/h if my symptoms are less controlled.
I would appreciate comments from anyone about their experiences with patches versus tablets and the dose I have been recommended to take.
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MrVimes
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Thank you! Yes celebration for sure. Unlike many people, I have had the very good fortune of having a neurologist back in 1999 that understood (though he did prescribe a dopamine agonist as that was the right treatment at the time), a GP recently very willing to help me 'experiment' based on the Mayo Clinic algorithm, and a neurologist in 2024 that is also very knowledgeable and understanding. I wish everyone could have such good fortune!
That is great news. There are so few neurologists here in the UK who understand the dangers of dopamine agonists.As for Buprenorphine- the patch is better suited for pain relief. Nearly everyone taking the patch reports that it stops working at day 4 or 5. Just search this forum for Buprenorphine.
HipHop73 is the latest person to report this.
So, do tell your neurologist that the anecdotal evidence from this forum is that the patch runs out at day 4/5 & a new patch has to be put on at that time.
I take 0.4mg sub lingual pills and have had complete relief from all symptoms. Zero RLS night or day.
So if the patch doesn't work- you could ask to switch.
I have been taking buprenorphine for a few years now, and find it to be the very best of all the RLS drugs prescribed, one of which sent me to the ER with cardiac symptoms. I am living almost normally, needing the drug only at nighttime. I do not use the skin patch; the buprenorphine I take is a small oral “patch” between cheek and gum (or on palate) which dissolves within minutes. Amazingly, I have not had to increase the dosage yet—several years since beginning it! The only caution I have is that the warning on the drug says that it can slow breathing, so I’m thinking it may be the cause of the apnea I developed. It’s mild, but it’s there, and I am alerting you to that risk.
Thanks TimeEnd. I'm aware of the buccal film form of Buprenorphine. Here in the UK, Buprenorphine sublingual pills come in much smaller doses than the USA.Dr Berkowski also states that Buprenorphine has the lowest risk of respiratory depression amongst opioids.
So far ( 3.5 years) I've had no breathing issues. I wear a fitbit and it monitors my breathing and oxygen saturation percentage.
Thank you Joolsg. I will take on this advice. Luckily my GP is very open to experimentation, so I am confident I will be able to adapt. My neurologist has also put me on a 'patient initiated follow up' - so I might be able to get back to him relatively quickly.
Did he also check for iron levels, including ferritin, and use of potentially aggravating medicines, like antidepressants and sedating antihistamines? Because those are two very important first steps in the treatment.
Just seen your excellent post and I thought you might be interested in my patch "journey".
After having my very patient and willing to learn GP prescribe buprenorphine tablets (0.4mg per day) I found difficulty in controlling the side effects and I was changed onto weekly (they only last 4/5 days) patches. After a lot of experimentation I concluded I needed between 10 & 15mcg/hr patches and so rather than trying to cut the patches (it is possible with some patches) I decided to use a 10mcg/hr 4/5 day patch and supplement that with small doses (sometimes as low as 50mcg) of cut up tablet usually taken last thing before sleep.
By adopting this strategy I am able to not only control the RLS but also significantly reduce the side effects (mainly nausea and cold sweats). I concluded that for me the nausea was not so much the buprenorphine itself but "withdrawal" problems ie if I kept the level of drug in my system above a certain level but always less than the level to block RLS then the nausea is very much less. For example if I do not use the supplemental tablet portions then I get RLS and nausea issues. Another problem, which several forum members have posted about, is the change over timing when one patch is on the way out! I work on applying a new patch after 4 days and removing the old patch after 5 days. this whole process is a problem to get exactly right because of the long half life of buprenorphine in the body and external factors such as temperatures, showering general activity etc.
I hope this information adds to your already significant experience on this topic
Dear MrVimes, Oh! The delight in seeing and speaking to a doctor who truly listens and is compassionate and uses knowledge and common sense.
I, as so many of us have, have had the horrendous augmentation problems in the past and intravenous iron infusions (ferric carboxymaltose) have helped me massively.
However I still need treatment snd I have the Butec patch which does only last about 4-5 days. I have solved this by having a low dose patch on my right side (changed on Tuesday) and another on my left side changed on Saturday. Therefore I always have two low dose patches on at all times but I get a little boost of a dose twice a week so it never wears off. It works really well for me…
I wish you all the best and so glad you have found such a gem of a human medic…! 🤗
I've used the patches and the sublingual strips (Suboxone). I would recommend getting the sublinguals because they are more flexible. They act within 30 minutes of taking, so if you need a little more, it is easy to take a little more until your symptoms are under control. With the patches, the first one will take over 24 hours to be fully effective, and you can't make minor adjustments. Plus there is the issue of whether they will be effective for 5 days, or 6? or 7?
Buprenorphine patches are far more convenient and stay in your system on a continuous basis until it is time to replace them. I have been one a Buprenorphine patch for pain management for years and it works well. The dose I take is low (5 mcg/h) so I don’t think it does much for RLS.
I hope so too. That dose is slightly stronger than your current morphine dose, but patch and pill doses are difficult to compare. Also, responses to / absorption of patches differ quite a bit among individuals.
Why didn’t dr Lennox suggest you try the buprenorphine sublingual pills first? I was swapped to patches after sublingual pills because I experienced miniwithdrawals in the morning. Pills allow for easier adjustment, thus seem the better starting point. If you can get in touch, do talk about it. If that is difficult, maybe just start the patches. I find the Teva and Mylan brands (they have exactly the same composition also in additional substances) work best for me; they mostly do last the full 7d.
Thanks for the advice LotteM. Unfortunately, although I did a lot of preperation on where I have come from, I did not think enough about where I wanted to go. Therefore, I had not researched other forms of opioid before the appointment so was not prepared to discuss the virtues of patches versus tablets versus sublingual pills. I am hopefull that my GP will entertain some discussion and be flexible on the way forward. But that is an appointment I have yet to make...
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