Anyone who has read our recent posts over the last 10 days or so will know that I've been pressing my wife's consultant to prescribe Temgesic 200mcg or buprenorphine to combat her horrible symptoms of refactory RLS.
Well I'm delighted to say that she has agreed to prescribe them and we picked up the tablets from the hospital yesterday, and Mrs P took her first one last night. I'm not going to say it's a miracle but she slept through the night with no RLS symptoms for the first time in many many years. She had slight nausea and wooziness and woke with a headache but hopefully this will settle down in a few days.
We'll keep you all updated.
I hope you all know that this forum is absolutely brilliant!! Without it Mrs P would be in a chronic condition. And we must particularly thank Shumbah for her help and knowledge of buprenorphine and for all the other regular contributors, Manerva, Madleggs, Raffs, Jools, Lotte and all the others. Without you we would never have known about augmentation and just accepted the situation.
To all the chronic sufferers with refactory RLS please, please, please write to your doctors explaining your suffering, your history of suffering and include success stories of other sufferers who have escaped this ghastly, life ruining disease. Ask for Temgesic treatment and include the evidence I included in our letter to our consultant. It worked for Mrs P and I hope it works for you.
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A well-earned result. I hope the nausea, wooziness and headache soon get settled and disappear. If not, and if the 200mcg Temgesic controls the RLS well, it may be worth trying to halve the dose. I know dr Buchfuhrer uses a buccal (inside mouth) patch of only 75mcg. You never know until you try.
Anyway, I think Mrs P owes you a big 💋 and 👏🏻. I hope it lasts. Long. Very long. And without noticeable side effects 🤞🏼.
Fanbloodytastic! Yippee. I hope she continues to sleep well. Thanks to Shumbah for keeping us updated on Buprenorphine.
I have a telephone appointment in the morning with Prof. Chaudhuri’s team BUT I am not feeling positive that they will prescribe Buprenorphine or Temgesic. I’ll let you know tomorrow.
Have a wonderful evening and well done for achieving such a great result for your wife.
Wow! What fantastic news. How pleasing that all your hard work and powers of persuasion have paid off and your NHS consultant listened to you. I hope that it will work well for Mrs P. Fingers crossed that more consultants will take notice and act in the interests of their patients and not listen to the hullabaloo regarding use of opioids for treating this awful condition.
I had a positive discussion with King’s College London this morning.
As I’ve just been prescribed the first legal cannabis for MS and pain in England, we agreed to talk again in 3 months to review its effect on my RLS. If no improvement then Buprenorphine will be the next option.
They confirmed that under UK law, any opioid has to be monitored on a monthly basis by the GP prescribing it. It is therefore the decision of my GP. They will be sending me a letter confirming that they have no objection to buprenorphine in place of OxyContin, but it is a decision for my GP to take as the GP will be legally liable for any adverse consequences.
I suspect that if you are able to see a neurologist privately on a more regular basis, the neurologist can prescribe Buprenorphine directly.
It’s positive news and I will prepare a file of research based evidence to help persuade my GP if I gain no benefit from the medical marijuana.
The more of us who can present a case to our GPs, the better. There will then be evidence for them to consider. It will hopefully have a domino effect.
Unfortunately my GP will not prescribe anything that hasn't been agreed by my consultant so I would need to try and work on him. Sadly my experience with my consultant thus far led me to put in a complaint against him. That said it worked because he did ring me a few days later. I was thinking of emailing him but am waiting to see whether the iron infusion I've recently had has any impact on my RLS. I hope your RLS will be much improved with your new med regime. Let me know how things go, xx
I have had exactly the same problem. My GP has said they wouldn’t prescribe anything unless the neurologist approves it. Clearly they are all ‘passing the buck’ to an extent.
I have a wonderful MS neurologist- so I may also ask her for a letter as well. She helped in the past by telling my GP to prescribe OxyContin when I was going through withdrawal from Ropinirole.
As Buprenorphine is another opioid, I cannot see any objections to switching from a more expensive synthetic opioid to a cheaper version.
I think we just have to keep collecting all the evidence we can and keep chipping away. Eventually someone may carry out proper funded research in the UK.
I totally understand the reluctance to prescribe opioids but as we all know, dopamine agonists are more dangerous drugs.
That's amazing news! You must have presented a compelling case so very well done. And bringing round the team at Kings is a big move forward.
Hope the cannabis works for you but it's good to know they are considering the buprenorphine as well. Hopefully the Mayo Clinic will have published their latest findings by then which will add weight to any change you need.
Maybe our UK doctors are beginning to tune in to our way of thinking.
The Mayo Clinic findings will help I am sure. I am feeling more positive and hopeful and for those of us with refractory RLS ( most on this website), hope is essential.
Thanks for keeping us updated and for sharing your great news- it all helps to get suitable treatment and to make GPs aware of the dangers of dopamine agonists.
You can ask your GP for a referral letter to the neurologist of your choice. There aren't many who know much about RLS but if you put out a new post asking for recommendations in a particular area you will get more replies. Cost will depend on where the neurologist works ( London tends to be more expensive than other parts of the UK) but an initial consultation will probably be £250 on average.
In London I know that Dr Guy Leschziner at Guy's Hospital and Prof. Chaudhuri at King's College Hospital both do private work and both have knowledge of RLS.
I certainly hope it works, I was put on buprenorphine and hydrochloroquine for RA and Sjrogens disease pain early summer and that is when my RLS started. My buprenorphine was administered through a patch which initially took 3 days and did not help my pain at all, it took months to figure out that all these meds made my condition that I probably had all along was adding to my RLS (feet for me) and just this last couple weeks I have been taken off so many meds like buprenorhine (no idea if it exacerbated RLS), promethazine, benadryl and put on oxycodone with cont hydrochloroquine. Also, potassium. From what I am learning from this forum, what works for some may not work for others. I will forever look at all side affects of all meds and if they can cause or exacerbate RLS because the pain, loss of sleep and the mental madness that goes along with it is so frightening I will probably do anything to avoid that severity if I have any control through food and medications. I sure hope your wife gets relief.
Hi, I am not sure whether you are aware that both benadryl and promethazine are among the medicines to avoid, as they worsen RLS. See e.g rlshelp.org and the alert card from rls.org (for the latter you have to be a member). You suspect that buprenorpbine may have been worsening your rls, but in fact it is increasingly used as a relatively safe and very effective (opioid) medicine especially for people with refractory RLS. Oxycontin is also a very effective opioid for refractory RLS, and I hope it works for you, now that you have stopped the benadryl and promethazine.
Im very aware of the promethazine and benadryl. I was on promethazine for the 15 years up to 3 x day for esophageal spasms, esophageal cancer and Barratt esophagus. It was not until June that hydrochloroquine and buprenorphine where both added is when all the horrific RLS started. It has taken months of trying to figure out if hydrochloroquine was causing problems however I now know it is a miracle for my sjrogens and RA. The buprenorphine caused stomach problems which in return probably caused me to take more like 3 promethazine a day and the unknown and undiagnosed RLS (feet) started about 3 days after buprenorphine/hydrochloroquine was added. Needed to say, 2020 really sucks and the past 4 months with a sleep deprived brain, stomach pain, neuropathy that I thought was going to either drive me into a mental hosp or shoot myself has been the worst time of my life. I do know i get Involuntary leg tics with oxycotin and fentenyl in the past so I assumed the buprenorphine patch was part of the problem. Anyway. My few prescriptions, including hydrochloroquine, potassium citrate and Oxycodone, discontinuing promethazine and benadryl for sleep has lessened to RLS. I really hope the buprenorphine works for your wife! What I do observe is that one treatment may work for someone and not for another in many ways. This syndrome is awful for the person, their family and my dog is hesitant sleeping with us now 😢 I appreciate you all and will continue to investigate what will help me and report what has and hasn't.
Im also sorry if I mistaken you for the person talking about their wife. I had a hard time going back to that post. Thank you again and I did look on the website you provided. Levothyroxin also can effect RLS and my omeprazole as it can deplete my iron
I understand why my doc told me to take an iron and magnesium supplement now!
It all sounds terrible. I do hope that this change in meds is making things better for you. The RA is also mentioned as a potential causative factor for RLS symptoms. And together with the Sjogrens, you have a lot on your plate. Take care.
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