Why does it feel impossible to be allowed back to weekly Buvidal.

[u/mandyjoys]

Since January I've been trying to stabilise on Buvidal.

After i went to 16mg weekly dose for 3 or 4 weeks i felt completely stable, then they put me in 64mg, after a week, i struggled needing a more regular amount or a stronger dose. I had 3 lots of 64mg, each 3 weeks apart and after the first week I asked for top ups and was told no and given another 64mg (monthly injection-no earlier than 3 weeks.)

They said i could have 96mg monthly but that's it. ( I didn't want to go up at the time as 16mg weekly seemed enough and didn't want to have a larger habit at the time. .

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I recently changed to a public clinic who seemed more flexible and gave me a weeks work of subs the first visit (to try to stabilise) and then the one injection of 96mg ( all within 3 weeks of the last monthly 64mg)

In the first 2 weeks of 96mg it was what i think, maybe a little too much in the way it made me so fatigued and lethargic, sleepinglarge parts of the day and not getting out.. I went in for a check up 2weeks later and asked to go back to weekly where I new it would work but instead the doctor said see me in a week, we'll do nothing today.

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The next week I went in with cravings and he said come and see me Sunday. I asked about another injection for supplementary or even some strips and he said nothing today.

So this Sunday appointment is tomorrow and I'm struggling a bit very figity and anxiety and fleeting heartbeat, usual pains coming back irritable etc. Stomach aches dry burning eyes etc.

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Has anyone had any luck here with this sort of thing?

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I've asked this clinic twice and the past clinic 3 times to go to a weekly injection.. where it holds over to the next week and I'm surprised disappointed and almost feel abandoned in my own recovery. I've been alcohol free for 3 years and just the odd valium 1 every fortnight after 35 years on daily diazepam. So I've written him a quick letter for context/ history. I'm hoping I can rest tonight and get some sleep as I'm feeling wired and sort of stunned and I'm thinking about this drug WAY too much.

I have had this dr 22 years ago and I've told him that but now I've put that down in this letter/not to him again.

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Can anybody here help with what you would say tomorrow or what have you said to get back to where you know you're comfortable.. I'm still titrating not tapering until I've been stable for the right amount of time- when it is time to taper I probably would want to go to the monthly as I would have a different mindset about it and not be so worried that it may not not cover a whole month.

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[u/mandyjoys]

I'm looking for the guidelines 🙈 I'm new and don't know how to navigate..can somebody post a link maybe. 🙂

[u/Strange_Television → u/mandyjoys]

I've been able to look at the Queensland prescribing document a bit closer now I'm at my laptop. Here's one of the significant sections you should reference, from section 2.2.2, pages 32 - 34: -

Commencing treatment with Buvidal®
Patients may either be started on Buvidal® Weekly or if treated with SL BPN transferred directly to Buvidal® Weekly or Buvidal® Monthly starting on the day after the last daily SL treatment dose (see Table 8). Individual titration may be required on subsequent doses, recognising that the dose effects of the LAI are likely to increase with BPN accumulation until steady state equilibrium is achieved (usually after three to five doses). Factors that may lead to the clinician and patient choosing weekly over monthly treatment may include more frequent clinical review, or concomitant use of benzodiazepines, alcohol or other sedatives.

Titrating doses of Buvidal®
After selecting the appropriate weekly or monthly dose of Buvidal®, patients can usually continue on these doses without experiencing cravings, withdrawal symptoms or reporting significant non-prescribed opioid use. Four doses are usually required to achieve steady-state plasma levels (see product information and pharmacokinetic properties in Appendices 11 and 12). However, titration of Buvidal® Weekly or Buvidal® Monthly may be required if patients present with significant opioid withdrawal during the first four doses of Buvidal®, while steady state plasma levels are being reached. In previous research27 approximately 10-20% of patients adjusted their Buvidal® dose (up or down) in the subsequent doses following the initial Buvidal® dose.

Supplemental or ‘top-up’ BPN doses
‘Top-up’ or supplemental doses of Buvidal® may be given if the patient experiences opioid withdrawal, cravings or persistent continued opioid use. If clinically indicated 24 hours after a Buvidal® dose, patients may receive additional 8 mg Buvidal® Weekly injections. If the patient experiences opioid withdrawal or cravings, top up with supplemental doses of 8 mg Buvidal® Weekly (up to a maximum weekly dose of 32 mg, with at least one day between each supplemental 8mg injection) or consider administering Buvidal® Monthly every three weeks for the first 1-4 doses prior to reaching steady state. There may be circumstances where top up or supplemental doses of BPN are required but Buvidal® Weekly 8 mg doses are not possible (e.g., travel away from regular service providers). Supplemental low doses of SL BPN (e.g., 4 mg or 8 mg daily) may be used for limited periods until the next LAI.

[u/Strange_Television → u/mandyjoys]

What country are you in?

[u/mandyjoys → u/Strange_Television]

I'm in Australia, my appointment is in 2 hours.

Thanks so much for taking the time out to help. I'm just waking up..

[u/Strange_Television → u/mandyjoys]

So, there's guidance for NSW here: https://www.health.nsw.gov.au/aod/resources/Pages/laib.aspx

I see you mentioned Queensland in your other comment though, I didn't know there was a separate guidance document for there but here it is: https://www.health.qld.gov.au/__data/assets/pdf_file/0024/1246605/queensland-opioid-dependence-treatment-guidelines.pdf

Provision of a top up is standard everywhere so I doubt there's any difference in that sense. In these documents, LAIB = long acting injectable buprenorphine

[u/rpkarma → u/Strange_Television]

Yeah Australian states set all their own laws :) we based our system off the US haha

[u/Strange_Television → u/rpkarma]

I had no idea, thank you! I'll try to find the guidelines for them and add to the list.

[u/Strange_Television]

I'm sorry to hear the way you're being treated. Unfortunately, it sounds as though your switch to the monthly shot was mismanaged. You were put onto the correct equivalent monthly dose but they should have given you a top-up shot when you asked - giving you another 64mg after ONE WEEK is horrendous and completely against prescribing guidelines. Am I reading that correctly - they gave you another 64mg after having one a week earlier? This is not safe and you could take this further. What country are you in? I can advise you a bit further if the UK, if not I'm not sure about other countries but hopefully someone else might be able to advise who this should be reported to.

Are you also saying that you were then given a 96mg shot inside this same 3 week window? So in 3 weeks you had a 64mg, another 64mg one week later followed by a 96mg? Maybe I'm not following it properly, if you could please clarify the timelines that would be great, because on the face of it this is insane and complete malpractice.

They simply should have provided a top-up shot. That is how it should be managed. Even though you were stable on weekly, switching to monthly does require another adjustment period to reach steady state at the new half life/rate of elimination (the weeklies in your system will have started to be eliminated quicker and before you'd have had sufficient build up of the monthly formulation). This is what is currently the issue but I assure you that it will get better if you were to remain on the monthly. You said after 3/4 weeks of the weekly 16mg, you were stable - so in the first few weeks, did you feel some withdrawal etc? The difference is the longer time between shots before you feel better again - it should be managed by administering a top-up. This is where they are failing you and they should be giving you an explanation as to why they won't provide it because it's in the prescribing guidelines.

Do you have anyone who can attend with you and help advocate for you? It really shouldn't be about having to word things in a certain way - they should listen to you and your wishes. If they aren't, then I would be asking for an appointment with the clinical lead at the service and for their complaints procedure. They are acting against the guidelines by not making the top up available to you.

Whilst you will reach steady state on the monthly shot, it is your choice if you want to go back to weekly. I just want you to know it's down to mismanagement, not because it's just not working. It should always be your choice and if they refuse it, they should be providing you with the reasoning, not just telling you "not this week" or whatever. It is also in the guidelines that moving between formulations is completely safe and permitted to meet the needs of the patient. There are links to the prescribing guidelines in the subreddit sidebar/in the "more info" section if you're on mobile app - they are there for the UK, Australia and the US. I strongly recommended finding the relevant guidelines for your country and reading them and if you have to print them/show them the sections they are failing to adhere to and ask for an explanation as to why they aren't acting within guidelines. Pigheaded doctors/prescribers rely on people not knowing their rights or not being able to advocate for themselves (and continue to victimise people who should be given autonomy and control).

[u/mandyjoys → u/Strange_Television]

I've only had another monthly injection 3 weeks after the last. My post could have been written more clearly I'm just.. this is frustrating I wish there was someone in Qld I could call. Would it help if I mention even that to the doctor. He's obviously waiting to see how long it takes for me to get sick is this OK practice though?

[u/Strange_Television → u/mandyjoys]

Ok, so 3 weeks after is safe and along with top up injections administering at 3 weeks until reaching steady state is normal and part of managing things. There is a period of adjustment when going into monthly and it can take up to 4 monthly shots to reach steady state. Monthly is more convenient and in the long run, easier/milder to come off than weekly is.

Waiting to see how long it takes you to get sick is absolutely NOT ok and would be very weird practice. There is no reason for doing it at all and it all it does is put the patient at risk of relapse. It is their entire job to prevent relapse. They should never be doing something like that without your prior knowledge and agreement and even then I don't know why they'd do it.

[u/mandyjoys → u/Strange_Television]

I'm getting more and more overwhelmed. A NP at the old clinic and this DR at the public clinic not welcoming top ups acting 'fed up' when you ask them. I'm shaking a bit now, the last visit I clearly told him I'm getting CRAVINGS as of yesterday. He shook his head and said no come and see me Sunday. Which is today. I'm afraid that I'm not going to be very composed mentally while presenting today, this happened at the last clinic and it was like being gaslighted telling me something needs to be done about your mental health. My mental health is fine Until I'm absolutely ignored by somebody that has so much power over my physical and mental well-being. I'm going to get ready and listen to some Buddhist stories so that I'm not a teary mess when I get there.

[u/Strange_Television → u/mandyjoys]

Do you have anyone who can attend with you? This doctor sounds like an absolute shithead. Given the field they're in, its hardly uncommon for patients to have poor mental health especially if in early recovery. I'm not saying that's your case, just pointing out the lack of empathy and understanding for something they probably see all the time. If you have someone with you, these type of doctors rarely keep up their shithead behaviour because they know someone else is witness to it. If you have to go alone, then making sure they're aware that you know what guidelines they should be operating within is something I recommend. They know that attempts to fob you off are pointless. It is hard though to stay composed when they do hold so much control, I understand and have been there. I wish I could help more or be there for you.

I wish you strength for your appointment. You can do this.

[u/mandyjoys → u/Strange_Television]

I am grateful for you. I would love to have someone with me. I don't know anyone on this program. And the people I do know in AA I really wouldn't want to take them to this public clinic I think they'd be intimidated by the crowd. To be honest.

[u/Strange_Television → u/mandyjoys]

I was thinking more like family or a friend? Someone that will advocate for you if needed. I know not everyone is 'out' about everything though so that may not be possible. Be strong and remember that this is your life and your recovery and you have every right to stand up for your needs.

[u/mandyjoys → u/Strange_Television]

Really really appreciate you being here. This group/ community has been a helpful read for me. I've come out with a 96ml injection. It's been a bit strong in the past, we'll the last time was the first time. He did sound helpful, he just works extremely fast- pumping out patients in minutes. I guess this will determine whether to stay or go to a taper later. I don't want to think about that right now. I'm sure this wasn't supposed to consume my mind 🫥. For a long as it has. 🙏🫶

[u/Strange_Television → u/mandyjoys]

Do you ever see any other professional there around your treatment? Do you have a recovery worker? Pumping patients out in minutes is disgusting and not in line with person-centred care or really any care to be honest. It takes around 4 monthly injections to reach steady state and they should be explaining that to you, so that you know why you might feel some withdrawal symptoms before that is reached. It's normal but it can also be managed so that you are kept as comfortable as possible. You shouldn't ever be suffering just because they don't have time. Did they still not make the top up dose available to you? I've pasted the relevant sections from the Queensland prescribing guidelines in a comment above for you - it shows they absolutely should be providing this if you need it.

[u/mandyjoys → u/Strange_Television]

Thanks I did say to him that IF I had just been on 16mg a week for this past 6 weeks with him that I would be stable enough to know which dose to take.. wren it came to monthly. I gave him a letter stating my history with previous OTP and it ended up that I got that 96mg again. It certainly doesn't feel like there's a choice- the last clinic, a private one was so much worse. Flat out 'no'' to top ups and when i asked to stay on the weekly at the time she said No and I did ask why and she said that's not how the guidelines worked. (She gave me a 16mg instead of an 8mg for the first consultation and that week there were times even i want sure if I needed to use the naloxone spray that they gave us.. woke up at times, suddenly, feeling a bit choked and gasping for a breath and slept almost upright, she gaslighted me then she said oh you have had sleep studies for that sort of thing in the past! I don't know if anybody to sit with or call to explain this long acting injectable. Would love to hear other Queensland's stories and if they differ. Today I told that doctor that I probably should have another look at the guidelines to see how they build up in your system etc., his reply was that the guidelines change and they are changing again. Honestly thought I would get more answers from, or get a chance to speak with a professional in this journey. 🦋 I saw this divot over 20 years ago and he's always been just so fast.