Handling Buprenorphine side effects

[davchar23]

Some of you will have read my earlier posts on this topic. For me having successfully blocked RLS with buprenorphine thanks to this forum's advice, I found that the side effects were not so easy to overcome.

I have done a lot of varying practical work varying patches, sublingual tablets and dosage programmes.

I experience severe nausea, hot/cold sweats, withdrawal problems and constipation.

My latest change was away from weekly patches topped up with small portions (50mcg) of tablets to an all tablet regime. The reasoning behind this was that the patches whilst supposed to give a constant flow of say 15mch/hr and last 7 days but I found that they varied significantly and were very subject to moisture, temperature and other factors. I have noted and worked with the resultant graphs showing patch performance and found it very problematical to reduce the side effects and to plan for withdrawal symptoms.

So have I achieved any positive results on an all tablet dose? Basically the answer so far is no!

I calculated that I needed between 0.5 and 0.55 mg/24hours of buprenorphine to block out RLS

Initially this was made up of a 15mcg/hr patches (ie 0.36mg/24hours) and topped up with 3or 4x 50mcg portions of tablet ie total of 0.51-0.56mg/24hours. Result no RLS but severe nausea and hot/cold sweats.

I have since tried to use 0.5- 0.55 mg /day of tablet, ie 500mcg-550mcg in varying amounts and times during the day mainly taking the majority at bedtime (say 300mcg)

I have had very little success in reducing the morning nausea and sweats.

In fact it seems that to prevent withdrawal symptoms I have had to increase the daily dose up to sometimes as high as 650mcg.

I would appreciate any comments on situation especially on the questions:-

a) Is there a logical reason why I need more drug using tablet rather than patch?

b) Can I be sure that the side effects are not withdrawal symptoms as it would appear. I have used extra amounts of say 50mcg and it does seem to give a reduction in the side effect severity but i am reluctant to keep upping the dose or to go down the cannabis route

Any comments would be appreciated

Davchar23

[Joolsg]

I'm so sorry to hear you are still experiencing nausea & severe sweats Davchar.I can only assume you are having to take a higher dose of pills because of the mechanism of action. Patches release a steady, even dose over 24 hours. The pills release most of the active ingredient in the first 11 hours. As you are sensitive to Buprenorphine 'dips' you will therefore experience Buprenorphine 'withdrawal' as the active ingredient in the pill starts to wear off.

It is annoying that it stops RLS but you are left with debilitating side effects.

[davchar23 in reply to Joolsg]

Dear Jools,

Thank you for your usual early reply much appreciated.

I think your are correct that I must be particularly sensitive to "bupre dips" and therefore I think i am probably better on patches wouldn't you think?

Davchar

[Joolsg in reply to davchar23]

Either that or take the pills twice or 3 times a day. It will be trial & error again.

[ucdailoi-no-1 in reply to Joolsg]

I found that taking different doses at various times of the day gave me whet I needed., so far. Its not the first time I had settled on a regime of the drug and then things changed.

I also wondered about the sweats being associated with drug dependence, but it is so effective at stopping RLS that I opted to continue with changing the doses.

There is nothing better than a good nights sleep, so persevere.

We humans all respond so differently to medication that general advice is good for moral support but little else. You just have to keep on adjusting the dosage and get sleep when you can.

Im sorry if my waffle has no advice of a medical value, but I only have my own recent, and new, experience to fall back on.

[Joolsg in reply to ucdailoi-no-1]

I think your reply was meant for Davchar. Hopefully he'll see it.

[davchar23 in reply to ucdailoi-no-1]

Thank you for your reply which was not "waffle" and much appreciated support. It is important that we all exchange our experiences as the medical profession knows nothing on RLS in the field.

I believe now that my nausea and sweats are caused but what Jools calls "bupre dips" and I am trying to find a regime to at least minimise these. Currently using 550/600mcg/day split 300 at bedtime, 100 at 5/6am, 50/100 when feeling that the "dip" is starting about midday and then 50/100 late afternoon early evening.

I will post when I get things steady but I realise that everyone is different.

Thanks again your support and keep posting

Kind regards

Davchar

[Cookiebum24]

I’ve had the same problems but with insomnia on Buprenorphine. I started on the patches but didn’t feel I got enough relief from them, so I moved to the tablets.

My insomnia was far worse on the tablets and I too suffered dips in the day. I tried adding a tablet in the day to prevent the dip, but it just made me increasingly tired 😴

I am now just on a 10mcg patch and have been for about 3 months now. I’ve found it to be the most effective in terms of reducing insomnia and fatigue. I think you have to let your body adjust and get use to the medication.

I still have small breakthrough episodes of RLS but I find these are generally hormone related. I also take Pregabalin and luckily my GP prescribes me a varying dose…..therefore when the patch is least effective (days 6&7), I increase the Pregabalin.

I really wanted the tablets and fought for a year to get on them but in the end they just didn’t suit me. For now I’m managing well and my sleep is not perfect, but it’s significantly better!

[davchar23 in reply to Cookiebum24]

Dear Cookiebum 24,

I am unlucky with the nausea but i do not really suffer from the insomnia that many persons mention.

I think my next move is to try incorporate some pregabalin into my "formula" but I am persisting with just tablets for the moment to see if the RLS and nausea are any milder,

Thank you for your reply and please keep me informed of any changes etc in your "formula"

Best regards

Davchar

[ucdailoi-no-1 in reply to Cookiebum24]

I had problems with being unable to sleep and tried 2MG of diazepam before going to bed. I get some great nights sleeping.

I am told that 2MG of the Diazepam is a low dose so it is safe to take it.

I sometimes have to resort to Diazepam for anxiety during the day, which is the reason that I have it.

I am a non drinker and have never smoked. My first concern about the drugs was getting hooked. It is in the back of my mind all the time, about relying on the drugs or suddenly finding myself in a drug clinic. I did mention that anxiety was my constant companion

I worked out that at nearly 78 I can afford to relax a little...

[RiversW]

Hey Davchar, As we have discussed previously, like you, I have tried many different ways of getting the Buprenorphine in my body. What I have discovered is that my dose on either the patch, the strip or the tablet is about the same. Just around 1 mg every 24 hours. I have decided not use the patch however because it was especially unreliable after day 4 or 5.

Like you I think I am especially sensitive to Buprenorphine dips as Jools calls it, so I have tried to vary my medication schedule. So far I have yet to discover a perfect solution. Almost every morning I wake up feeling horrible. No nausea, but generally just bleak body and mind. A 5am dose seems to help but I am not sure.

I keep experimenting with lowering my dose. I am trying to get it below 1 mg in hopes of decreasing some of the side effects. Cold sweats, the aforementioned very unpleasant wake up and worst of all, the anxiety/depression that sometimes causes me to have a complete meltdown accompanied with total despair and uncontrollable sobbing. I have gone from 1.5 to 1 mg but the cycle seems to be the same. I don't notice any reduction in side effects with the lower dose, but I will keep trying. Thanks for your post. For me, they are always helpful and informative. R

[davchar23 in reply to RiversW]

Good afternoon Rivers W and thanks your reply

We are both on a "research trial" to try find the best way to use buprenorphine to block RLS and to minimise the side effects.

I am still working on taking a 100mcg mid evening and a large dose |(300mcg) at bedtime and 100mcg may be 6/7am. This seems to give me somewhat of a relief from the nausea but not sweats so far. I then need another 2x50mcg during the rest of the next day to stop the Jools mentioned "dips"! This means a total of about 600mcg (o.6mg) per 24hours.

I will keep you posted on any progress etc

Kind regards

Dasvchar

[RiversW in reply to davchar23]

I don't know if because in the states the smallest dose in tablet form is 2mg I started at a higher level than I needed. I do know that when I get below 1mg or ever 1.25 mg I have RLS symptoms. I saw a sleep specialist here in Brasil yesterday and he identified something in I think my hemoglobin counts that indicated to him that I might benefit from a iron infusion. I had nothing to do with my iron numbers. The first time I have heard this. I will try to find specifically what he was talking about. In any case I will have an infusion on Friday. Here in Brasil it is a little over 100 dollars. I will let you know the results and if I experience any benefits. Perhaps the infusion will allow me to lower my dose. Also, I saw a psychiatrist today who doesn't believe Wellbutrin is right for me because be believes it's anxiety, not depression, I am experiencing from the Bup. We will see. WAY TOO MANY DOCTORS!

[davchar23 in reply to RiversW]

Good evening RiversW,

Just to say good luck with the iron infusion and i hope it works for you

Best regards

Davchar

[RiversW in reply to davchar23]

Thanks!

[SueJohnson in reply to RiversW]

If it is anxiety, buspar is safe for RLS.

[RiversW in reply to SueJohnson]

Thank you Sue!

[RiversW in reply to RiversW]

Talked again with my neurologist and thought I should clarify something I wrote on my reply. My neuro suggested the infusion because for someone who has severe RLS my ferritin levels were low, not because he noticed something about my hemoglobin. I just was afraid of sending people down a rabbit hole. Rabbits can be dangerous. Sorry about that. I misunderstood him. All the best.

[4Curiousosity]

I'm in the US and the smallest pill I can get is a 2mg. So I have to break it into very small amounts. I used to get sick feeling and took Flexiril for it, but now it's gone away. I take 1/4mg or less by 2pm (sometimes another 1/4mg during the day). It's very difficult to measure as the pills break into dust. but I do get sleep!

[davchar23 in reply to 4Curiousosity]

Dear 4Curiousity,

I think same applies in UK to tablet size ie 200mcg (0.2mg). I use a tablet cutter (Amazon) and that enables a 50mcg portion to be used without dust! I t seems as if you are blocking your RLS with no more than 500mcg per day and that is good.

Thanks your reply

Davchar

[ID158 in reply to 4Curiousosity]

I don't think I have anything to say to help OP unfortunately. But 4Curiousosity: you might look into the 2mg Suboxone film (or generic of it) if you haven't. I take that and it's pretty easy to cut--a lot easier than cutting the pills, it sounds like.

[4Curiousosity in reply to ID158]

Thanks. I took the film years ago, but my insurance stopped offering it. It was great