After finding this site and all the advise three months ago. I saw my GP, told him about HealthUnlocked and gave him the 17 page print out of information from the Mayo Clinic. He agreed for me start weaning off Sifrol slowly and to help with withdrawal prescribed 50mg Palexia. I believed he was going to help me.
I also reached out to Shumbah, a lead from Joolsg, and discovered she is fairly local and gave me amazing information, a good GP to see and hope.
I started with 50mg Palexia, and that was only good for about the first month. Now on 100mg Palexia and down to 1 1/2 tablets Sifrol. I'm still suffering from midday to 11pm every day. So I saw my GP two weeks ago, told him I'm scared as suicidal thoughts are often as this is still unbearable and I'm getting desperate. I thought he was on the right track with what to do. But when he told me to go up to 2 1/4 tablets Sifrol and also saying 'we don't know enough about rls' I felt crushed and left sobbing. I did not increase the Sifrol.
I made an emergency appointment to see my phycologist the next day and helped with making an appointment to see the GP that Shumbah had mentioned. I saw that GP four days ago. He heard me, understood me, helped me. Prescribed 2mg buprenorphine sublingual (relieved I was able to get the medication from a local chemist, I did have to phone around) another appointment this week and to arrange a referral to the Drug and Alcohol Clinic so I can stay on this medication. I've had no jumpy legs and I'm sleeping.
Still a journey ahead of me and much more to learn. Such a relief to find this site, horrible to know of so many of us suffering. I am grateful for the support here and how it's helped me. Thank you.
Written by
Miss_E
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Hi Misls_E. Well it’s really good to hear a story with a happy ending and that Joolsg put you in touch with Shunbah’. So there you go, our arms reach around the World, so none of us are ever alone. So one more step along the road you go, my very best wishes
I am very happy for you that the contact with Shumbah, the other go and the (relatively high dose of) buprenorphine works for you. Do you plan to continue to reduce the Sifrol slowly? Even with the buprenorphine covering the RLS and the withdrawal, I would think it best not to rush things. But I am not a medical doctor or your doctor
May I add a few few words in favour of your original gp? He did well, listening to you, reading the Mayo Clinic paper and prescribing Palexia (tapendatol, an opioid) to help with tue withdrawal. Withdrawal is hardly ever easy, even if you go slow. So his suggestion to back up a little when you were experiencing too bad side effects from the withdrawal seems a sensible one to me. The amount seems strange, but you didn’t say what you were on before and in what steps you reduced. Also, I can very well understand the reluctance of gps or mds in general to prescribe opioids to fairly high doses. Withdrawal from dopamine agonists that have been used for RLS is often a prolonged process, and opioids are more generally used temporarily.
May I suggest that you try to keep the buprenorphine to the lowest dose needed? Maybe (far) lower than your current 2 mg? You may already know that Shumbah also mostly takes far smaller doses. And of course, she no longer takes Sifrol or another DA.
But maybe I worry needlessly, and you will do very well on the 2 mg, and will successfully wean off the Sifrol in due time. Good luck and quiet nights!
I started weaning down from 3 tablets. I'll still reduce 1/4 tablet every two weeks.
I am sorry, I do get stuck with words and then remember/realise more important information needed that I should share, after I've sent it. I'm not a social media person. I'm learning more than rls in this community. Feeling safe and comfortable as well as gaining strength.
The wonderful GP that Shumbah put me on 2mg Buprenorphine and Shumbah did also say that would be too much. I took 2mg the first day, the next day a tad less of 1/4 and there was a moment of tiny niggle of jumpy legs. The last two days 1/2 tablet. I take it at midday and it's evening here now. still feeling nauseous. I'm so scared as I don't want to feel anymore rls.
I don't think you are worrying needlessly. It's nice to know you care and are listening to me too.
Thanks for elucidating. Well done again. I hope the nausea will settle soon. I assume you know about the various safe-for-rls anti-nausea options? Going slow on the buprenorphine may also help. I found you can take 1/2 or even 1/4 tablet, wait 30-60min whether it works and if needed then add another 1/2 or 1/4. Often it works far faster than the 60min. Do play around with that. For inspiration, read a few more posts about buprenorphine on this forum, plenty around these days!
RSL can be caused by insufficient B vitamins, . . . esp in the brain/CNS, within cells.
RSL may be improved, & sleep quality too, generally by:
a) a course of vit B12 injections ( - over several months, ... where B12 supplements may be ineffective); plenty of info on this via HU's PA (pernicious anaemia) forum . . . &,
b) increasing thiamine - i.e. vit B1 - levels in a specific ways, as described by 'high dose thiamine' (HTD) protocols. Those with much experience & knowledge of this include (retired clinician) Dr Lonsdale, & co-author Chandler Marrs, PhD, ... who's views may be worth considering carefully ? This 'HDT' knowledge is essentially wholly MISSING from our healthcare systems in the 'developed world/global north' - as STRANGE as that may seem ! 😨❗
The above would seem to address true underlying causes of many symptoms & presentations, in specific cases where they apply - but are usually not even considered as the true ( - correctable!) cause(s).
One could have cellular deficiencies of one, or both vit B1 &/or B12. Our 'healthcare providers' seem more trained to prescribe medicines which suppress certain symptoms, . . . & not often without their side effects.
Hope the above will be of use to you, . . . & many other readers!
AtB,
Sid 😐
Sunday 12 May 2024,
. . . on a mild enuf ☀️nny a.m., . . . with infrequent rain forecast for later.
Withdrawal from dopamine agonists is HELL.Most of us experience severe, all over RLS and no sleep.
The GP was correct to caution slowness in reducing Sifrol.
We recommend half a 0.125 pill every 2 weeks.
As Lotte says, 2mg is higher than most people need, but you can reduce that dose now to 1mg as you reduce the Sifrol.
You WILL still experience RLS as you're withdrawing. It's very rare to get through withdrawal without experiencing the severe RLS. But it WILL settle about 3 to.4 weeks after your last dose of Sifrol.
So, try to accept the 3 or 4 weeks of difficulty you WILL experience because you will have relief very soon.
The nausea on Buprenorphine is common.
I used medical cannabis to settle it. 0.2 or 0.3ml of cannabis oil with 20% THC. If you can't get cannabis in Australia, ask for zofran. It is an anti nausea drug that will not worsen RLS.
The nausea reduces over the first few weeks, so stick with it. Reducing the dode to 1mg or 0.5 mg Buprenorphine may be better.
Stay strong. You are seeing the right people and you will get through this.
Great to hear you have found some help. I am also in Australua (West) and very little is known about Rls.I have successfully come off pramipexole earlier this year, although it took me 12 months. I was on it for about 15 years.
My Dr has me on slow release Targin 40mg daily. I still get Rls most nights but at a very low level.
Not too sure what the difference between Targin and buprenorphine is - perhaps someone can enlighten me.
Many of us have had the same feelings of desperation as you and it is so wonderful to be in conversations where people understand what we are going through.
Targin or Oxycodone/naloxone is just a different opioid. The advantage of buprenorphine is it is long lasting whereas for some they need to take targin every 6 hours or they will get mini withdrawals.
Hi Sue. I think I replied to you in the wrong place!!! I spoke with my specialist and he said he would look into potentially changing my 40mg of targin to Buprenorphine. He was not familiar with how to do this successfully. Do you have any words of wisdom for me.It has been interesting that I take 15mg at 3pm abd 25mg around 8pm of Targin. The restkess legs usually starts in the early hours of the morning.
Since coming off premapaxil and only being on Targin, the intensity of the rls has decreased significantly.
You wisdom is greatly appreciated. I have found this forum so amazingly helpful as very few people have even heared of rls in Australia. I find it depressing trying to explain to friends so needless to say, keep the issue primarily to myself, not healthy though.
Thanks so much, Sue. I spoke with my specialist (Western Australia) yesterday. He said he was happy to look into buprenorphine and would have to explore how to transition from Slow release targin to this drug. Given your wealth of knowledge, do you have any suggestions re how to swap from targin (40mg daily) to buprenorphine . Again, many, many thanks. Like others, I could not cope without the wonderful support of this group.
You can also ask your pharmacist this question. In the main I find them more helpful than doctors in relation to medication (obviously this is their field).
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