Jelbea in reply to dickJones and anyone on buprenorphine patches or tablets.

[Jelbea]

I have not posted for some time as I have changed from Butec patches to Temgesic sublingual tablets and have been having some issues. Firstly, as dickJones has found out the patches definitely do not last seven days for most people. When I started the patches (15 mcg) I was getting reasonably good coverage. After a short time the patch seemed to last only five days. When you change your patch again on day 7 it takes up to 72 hours to become full strength. If it had lasted seven days then the changeover would be covered by the drug which remained in your system at the change.

As time went on I was getting less and less coverage from the patch and my GP was very against allowing me to change it more often, although eventually she agreed. This did not help me very much and eventually I got only 2 - 3 days coverage.

Day 1 - New patch took the next two days to build up

Day 3 and 4 gave fair coverage and sometimes day 5 was not too bad

Days 6 and 7 - no cover.

Eventually I got a telephone consult with Professor Walker and he first of all changed me back to oxycodone which I had taken previously. This was a complete disaster and he then persuaded my GP to prescribe Temgesic. She has done this very grudgingly and I have to almost fight for a renewal of the prescription - at times the prescription was only for five days supply!.

The change to Temgesic has not been straightforward for me and I am now taking 500 or 600 mcg daily. Jools can take all her Temgesic in the evening and this covers her overnight and lets her sleep. When I did this I only slept to 3 or 4 am and always awakened in avery depressed state. Prof. Walker told me to take 200 mcg in the morning, 200 mcg early evening and 200 mcg at bedtime - even going up to 800 mcg daily. This did not work as the night-time dose is too small and wore off very quickly. I have been tinkering around with the dosage - trying to find the best solution - but I am coming to the conclusion Temgesic may not be for me. I seem to metabolise the drug very quickly and in between doses get withdrawal symptoms with depression. I do not want to take a very high dose as I have other medical problems as well. I have contacted Prof. Walker again but have not heard back as yet.

As regards dick.Jones getting more of the patches I think he must have a very understanding GP. These were given to me strictly as four patches for 28 days. GPs usually have to keep a strict record of opioids and I understand this.

I do not know what I will do if the buprenorphine fails for me. As everyone knows on this site RLS is a very cruel disease. I have a rare form of blood cancer and take oral chemotherapy daily and if I had the choice of getting rid of one of these ailments I would keep the blood cancer. I can get help for it and understanding and do not have to battle GPs for every pill I take. Without the RLS my quality of life would improve greatly as at least I would sleep through the night.

This is a long post but I felt I would like to let others know who are unsure. Jools has been a great help and support to me throughout and I thank her for all her assistance. I will update as and when there is any more detail.

😀👍

[dickJones]

Many thanks, Jelbea, for your response to my Buprenorphine query. It consolidates in personal detail the very helpful reflections made previously in this thread and my own accumulating experience of Buprenorphine patches. In particular, it identifies that dilemma of contradictory medical judgement from which so many of us suffer.

As to my having a very understanding GP, so shadowy is the operation of the doctors at my practice since Covid that you never know who you're going to get when you phone in. Such is the gamble that you might end up with a clock-watching case load jockey or an entirely responsive and sympathetic doc with a sense of responsibility towards his/her patient's specific needs! Yesterday I went into the surgery and buttonholed one of the receptionists. From the moment I used the word 'emergency' things went into top gear and within the hour I had a call from the duty doctor who, after a necessary interrogation of my stated needs, promised availability of 5 and 10 mg Butec patches at my chemist the following day. Pure chance when your nominated GP is so rarely on call.

Your account of your own situation, Jelbea, will be very useful to those struggling with short-life Butec patches within the context of other challenging health needs. This thread has been enormously helpful to me and I'm very grateful to the patient experts whose empirical knowledge provides the very database that should be on tap at our surgeries and medical centres.

[Biscuitface in reply to dickJones]

Beautifully said.

[Joolsg]

Oh Jelbea,I do so hope you find relief. I absolutely know what you mean when you say you would keep the blood cancer rather than the RLS. I wholeheartedly agree. I have MS and permanent disability from it but I would honestly choose it over RLS . I just wish the doctors who treat us realised what an all consuming, life changing disease it is.

I so want everyone to find something that stops their RLS.

Thanks for sharing your experiences on the patch and on Temgesic. It will help others to understand why it may not be working well for them.

[Jelbea in reply to Joolsg]

Hello Joolsg - Thanks for your good wishes. I had put all my hopes into temgesic and perhaps I need to go higher in dosage. However, if it is not going to work and I have eventually to get off it I do not want to take too high a dose. The problem really seems to be that my system is using it up too quickly and then withdrawal symptoms begin if I do not take a little in the morning and the afternoon as well. I have been trying to contact Professor Walker through his secretary for two weeks with no success. He had said to contact him if I was having problems - perhaps he is on holiday. I shall have to wait and see.

[Joolsg in reply to Jelbea]

Keep trying. I know the NHS is under enormous pressure & everything is being cancelled & postponed but hopefully emails will be answered in due course.

[dickJones in reply to Joolsg]

Crazy, isn't it? I have prostate cancer, which, thanks to an excellent oncologist is carefully managed. But the regime by which the cancer is controlled is more sustainable and balanced both in its intended and its side effects than is my PLMD. There's a wildness, a chaos in the nature of RLS/PLMD that for much of our experience of them defies treatment. And those treatments that are routinely prescribed can carry with them such a payload of medical ramifications that we're constantly searching for alternatives. And to compound our struggles we are routinely ignored both by general practice and neurology.

As Joolz says, may we all find some way out of this life-inhibiting wilderness.

[Jelbea in reply to dickJones]

It is crazy, as you say dickJones, that we would choose to keep cancers, MS, etc so that we could be rid of restless legs. Joolsg has been working so hard to try to bring the whole RLS business out in the open and get doctors taught about the dreadful disease it is and how it devastates one's quality of life. I agree fully with all you say and you have described it so well.

I send you good wishes as you plough on from day to day and I do hope that more frequent patches will help you.

[dickJones in reply to Jelbea]

Many thanks. Starting the new pairing of 5 and 10 today!

[Joolsg in reply to dickJones]

Dick, I am really hoping that in the next year we will get a campaign up and running to expose the poor treatment of RLS due to total lack of training or education of doctors and neurologists.Something has to change.

I'm just so appalled at the negligence out there. Neurologists prescribing Parkinson's doses of dopaminergic drugs, dismissing the link to low brain iron, refusing low dose opioids for refractory RLS citing 'addiction' issues.

There is sufficient evidence from the USA now and yet UK doctors refuse to accept it because trials have not been done in the UK. But then they won't do trials in the UK!

It's so frustrating and it will be an uphill battle but there are enough of us to make it happen IF we all get involved.

[Jelbea in reply to Joolsg]

I would love to know how to get involved. It is beyond frustrating at present. So many people suffering so much and nobody will listen. Also having to fight every step of the way to get help when we are already all exhausted from lack of sleep, etc.If I can do anything please let me know.

[Joolsg in reply to Jelbea]

I will do. I will put up a general post asking people to email their stories of poor treatment and lack of knowledge amongst doctors and neurologists.It is, as you say, frustrating to fight every step of the way for help.

[Heideinthewild in reply to Joolsg]

there is the rls foundation which on their site provides an area to describe how rls has impated your social, emotional and physical well-being, how long you have taken opiods to manage your rls and how opiods have improved your overalll qualith of life; they ask for your permission to use your story in letters to legislators requesting their support for policiies that allow access to opiods for rls.

On TikTok look up Claudia A Merandi she is a pain medication advocate for all chronic pain sufferers and deals with and fights against pain management struggles caused by the dea and cdc jailing or revocating the licenses of doctors who prescribe. she has podcasts on spotify and apple under "the doctor patient forum" She is a great source for how to advocate for pain relief to aid chronic pain sufferers