Buprenorphine annual review

[Shumbah]

Every year I am required to visit to drug and

Alcohol clinic this is a legal requirement in Queensland in doing so this allows my GP to prescribed my buprenorphine.

I was the first person on this new program.

Restless legs was not a

Disease that Dr Jeremy Hayllar was overly familiar with.

Both my GP and Dr hayllar have listened and been genuinely interested in this cruel disease.

As I receive new emails from Dr Glen Brooks and success stories from people from across

The globe both doctors get a copy. They are

Scanned into my medical file so NO doctor in the future can say to me this stuff does not work .

Sadly this week I received 4 emails

From people who’s doctors are on holidays and they have had to see another doctor in the same clinic and been refused there medication .

Or doctors retiring new doctors refusing to prescribe or in America someone who has been prescribed 8 mg Buprenorphine and working for some months and then a glitch with insurance Zero Buprenorphine whilst the insurance companies jump through hoops.

How Cruel to be on a medication that works and then all of a sudden

for some reason they have had their medication ceased or delayed.

BIG THANK YOU to all of you who have sent me

your success stories.

I told Dr Hayllar even once we are well sadly it’s not uncommon to suffer PTSD and fear of not being able to get our medication as regularly as blood pressure medication.

[Jules1953]

Hi Shumbah, thanks for this message, I am one of those people who let you know that this happened to me. So now I have to jump through more hoops to be able to use Temgesic. (Micro dosages of Buprenorphine)I have an appt booked with a sleep specialist via phone , on the 17 Jan. This sleep specialist is in Western Australia. Fortunately he is up to date with the latest research and treatment for RLS and has a keen interest in helping those of us who suffer with RLS.

Wishing everyone a Very Happy Christmas wherever you are in the world. Best wishes from Julie

[Aetje in reply to Jules1953]

Hi Jules1953 I live in west Australia am very interested in your sleep specialist,can you share that with me please

[Joolsg]

Thanks for sharing these stories with medical professionals Shumbah.Buprenorphine works in a slightly different way to other opioids and has been miraculous for many of us with refractory RLS who have tried and failed the Alpha2Delta ligands and other opioids after getting off Dopamine agonists.

Hopefully, all this evidence will help others get Buprenorphine.

I think stopping Buprenorphine because of unfounded fear of 'addiction' is cruel and not based on supporting evidence.

[Jelbea]

Hello Shumbah - Its good to hear from you and that you are continuing to help the cause so well for all RLS sufferers. I am still on the bup patches but would really require to go from the 15 mcg to 20 mcg. However, I brought this up with my new GP who wants me to lower the dosage down to 10 mcg. patch. I am getting withdrawals after day 5. I have persuaded her to put off the lower dose until the New Year but I am not hopeful. As you say it is so cruel when we actually get something that changes out lives only to have it queried again.

Anyhow I hope things have improved for you and yours and I send sincere Christmas greetings and hope 2022 will be much better for you.

[BeachGolfer]

I’m very interested in exploring the possibility of taking Buprenorphine and highly doubt that my neurologists would prescribe it since they have no experience with it. How do I contact Dr. Glen Brooks? I wish you and all our fellow sufferers a Happy and a Healthy ( and as RLS free as possible) in the New Year.

[ChickenTwisty]

I am also in Australia (SA).

I have had RLS with over 10 years of augmentation and am currently trialing a Buprenorphine patch. I have found it as effective as Sifrol was for me initially and more effective than Targin (oxycodone modified release). Even on what I think equates to a lower dose i.e. 5mg Targin twice daily vs 5mcg buprenorphine patch hourly (10mcg as of today as augmentation partially (significantly) reversed but still "very severe" on the RLS scale ).

I have been on it for a month today and dreading ceasing in another two months. I was prescribed it to get off the Sifrol with the intent that I then again trial previously failed 2nd/3rd line treatments. Seemed like a good idea going in, but now I really want to stick with what is working and empathize with those who have had it taken away from them.

I note that Buprenorphine is also an antidepressant. I don't know if that is an easier path than obtaining it for RLS but maybe an option for some, particularly given it is comorbid for so many! It likely differs from state to state, don't know for sure but don't think it's and option in SA.

[Shumbah in reply to ChickenTwisty]

If they insist on you trialing other failed drugs, I sugest getting the prescription , but not actually take it simply make an appointment and go back and say you have had to cease it due to and rattle off all the terrible side effects {easily found online } emphasise suicidal thoughts , then they cannot reprscibe . I used to go to the doctors twice a week .The dripping tap !!!

If you would like some sucess stories and my medical letters from my doctors send me your email address. Iam also happy to talk to you on the phone.

[ChickenTwisty in reply to Shumbah]

Hi,

Thanks for your reply and kind offer

I don't think it is a matter of them not wanting to help me, but more a matter of what they are allowed to do and a good part of that is down to bureaucracy. I am going through a pain clinic, as I understand it if isn't pain, as in triggered by pain receptors, then it isn't in their mandate. Yet they are the only ones who can provide the regulatory authorization to prescribe opioids on an ongoing basis. A bit of a catch 22. Though there must be some room, because they still prescribed me buprenorphine (their idea not mine, I hadn't herd of it), but it did seem this was a one shot thing.

I am hopeful that after 2 nights of hell, followed by 4 hours sleep early this morning that I am off the pramipexole now and I get coverage of the buprenorphine for two more months for the augmentation to wind back and at that point maybe something that had failed would work again.

[Shumbah in reply to ChickenTwisty]

Sorry I am confused,If something has failed prior how can it work second time around ? Are you saying that they are going to put you back on something you have already failed on ?

[ChickenTwisty in reply to Shumbah]

Yes, that is my understanding. I had been on prami for 10 years after augmenting in the first couple of months. They weren't going to allow opioid, I pleaded I needed help to get off prami and hence they are allowing buprenorphine for 3 months only.

[Shumbah in reply to ChickenTwisty]

My letters would probably let you stay on Buprenorphine

[ChickenTwisty]

Thanks for the offer, much appreciated, I will see what the Dr has to say.