buprenorphine -what next

[Happykaz]

I’ve been on buprenorphine for about 2 months now. I take 600 micrograms. I have also been slowly reducing from pregabalin by 25 mg every two weeks and am now on 100mg.

I had nausea when I started buprenorphine but that stopped after a couple of weeks only to return. I have totally lost my appetite and find it hard to eat anything. I have lost nearly a stone and am/was only a size 10 to start with. I am also quite depressed. I don’t know what to do next? I am due to see my doctor in two weeks but am hoping to get an earlier appointment tomorrow. Has anyone got any suggestions of where I can go from here?

The annoying thing is the buprenorphine has worked wonders for my RLS but I’m not sure I can cope with the side affects any more. Thanks.

[Drls]

hello Happykaz - my experience on buprenorphine is that I have been depressed and tearful on the tablets but I wasn’t on the patches - so I wondered if you had tried the patches. Sadly neither seem to work very well for me regarding restless legs…. However the patches did work quite well in the middle of the week and I’m considering asking the Dr if I can try again and overlap the patches on days 5 and 6 to get a better coverage.

Also the patches did not affect my stomach - the tablets do - I feel sick a lot of the time and seem to move between constipation and upset stomach. So I would say try the patches if you can.

Good luck.

[Happykaz in reply to Drls]

Thank you for your response. I will definitely discuss this with my doctor as I haven't tried the patch yet when I see her in two weeks

Unfortunately, I saw a different doctor this morning as mine wasn't available. She dismissed everything I said and gave me a lecture on taking opioids. I said that my consultant had agreed to buprenorphine and that when used for RLS you usually do not have to increase the dosage. She wasn't going to listen. I told her the side effects I was experiencing and she said it wouldn't be anything to do with the buprenorphine even though I pointed out these side effects were on the leaflet. Anyway she is now testing to see if I have any other sinister illness! And she gave me something for the nausea. Again I asked if these would make my RLS worse and she just said we'll have to wait and see!

My normal doctor is so lovely and I know she will listen to me when I next see her in a couple of weeks. So thank you for sharing your experience with me.

[Drls in reply to Happykaz]

Oh no that Dr sounds terrible! Thank goodness you have another nice, responsive Dr….good luck when you see them!

[Happykaz in reply to Drls]

Thanks

[SueJohnson in reply to Happykaz]

What did the doctor give you for the nausea? I can probably tell you if it will likely make RLS worse, although maybe you know by now.

[Happykaz in reply to SueJohnson]

Hi Sue. Yes I soon found out! The doctor gave me omepraxole which neither helped with the nausea and made my RLS much worse. I googled it after I started getting RLS symptoms and it immediately stated that most proton pump inhibitors worsen RLS.

I managed to make an another appointment yesterday morning with my doctor. She did some research to find some nausea medication that would not impact on RLS. After looking at several alternatives she came up with cyclizine hydrochloride. It actually says on the internet that "Cyclizine is used as a treatment for Restless Legs Syndrome (RLS). This medication works by blocking histamine receptors, which can reduce muscle spasms and cramps. In addition to this, Cyclizine can also help improve sleep quality in patients with RLS." So we thought this would be perfect. However, I soon found out this wasn't the case and subsequently found an old comment from 6 years ago where Joolsg said "According to the experts, antinausea meds ending in "-zine" typically worsen RLS, so your doctor is wrong. Recommended antinausea drugs are granisetron hydrochloride, ondansetron hydrochloride, dolasetron mesylate, and Domperidone. All listed in Table 8.2 of the book I have by Dr Buchfuhrer & others."

At least I know what medication to ask for now!

Its so difficult even for those doctors who are trying to do the right thing when there is incorrect information on the internet. However my doctor did say if I had any problems to go back to her straightaway. I am so grateful for her. She isn't in now until Friday though and there's little point in seeing another doctor as they might not be so understanding. So until then I am taking one tablet a day instead of three to try and balance the nausea and the additional RLS symptoms.

Thank you so much for your response. It is always much appreciated.

[SueJohnson in reply to Happykaz]

That's really interesting about the Cyclizine. Domperidone is a dopamine antagonist which usually makes RLS worse so I would avoid it. Granisetron hydrochloride (Zofran) is the one I and others including Joolsg usually recommended. Interestingly ondansetron hydrochloride is the active ingredient in Zofran. I also would have recommended dolasetron (Anzemet) but you found these on your own. What is the title of the book you have. I might want to buy it.

[Happykaz in reply to SueJohnson]

Thanks Sue, that's really useful to know for when I next see my doctor.

The book is not one I have, Joolsg has it. I would be interested in getting it too so I can read and pass on to my doctor if appropriate.

[SueJohnson in reply to Happykaz]

Actually I do have the book - It is the Clinical Management of Restless Legs Syndrome. To be sure it was the right book, I found the Table 8.2 you referred to. I haven't really found it that useful. You can get it on Amazon. It says that Domperidone is only available outside the US. And looking at it briefly it is not up to date because on iron deficiency to take iron 3 times a day which is not correct since hepcidin is released when iron is taken which prevents iron from being absorbed for up to 24 hours. It was printed in 2013. And a quick look I see other things that are out f date or not up to date like the criteria for determing augmentation.

[Happykaz in reply to SueJohnson]

Thanks Sue. As you didn’t find it very useful and it’s out of date I won’t be buying it. Thanks for looking into this for me.

[LotteM]

Ohhhh, what a bummer. My side effects on buprenorphine are fatigue and brain fog and I am very slowly learning to accept them. Do discuss with your doctor l, as yours are knowns and listed side effects to see what can be tweaked to reduce the most debilitating ones. A patch (I am on 5mcg/h, but that may be too low for you) may indeed touch the lack of appetite. But also suggest to your doctor alternative opiates, in general. Your doctor can then come up with ones s/he finds acceptable. For other diseases it is quite common to have to toggel between alternative meds to find the one that is most suitable for the person. Good luck and let us know how you get on.

[Happykaz in reply to LotteM]

Hi and thank you for your response. I have already tried some other opiates but will discuss this with my own doctor when I see her in a couple of weeks. I may consider a patch given your and also Drls's response as I still find taking the sublingual tablets difficult.

The discussion with a different doctor this morning was not at all helpful as you can see from my response to Drls. I am so pleased that my normal doctor is so understanding and willing to learn from me and to do research when she doesn't understand something. The doctor this morning is one I shall avoid in future!

Thanks again for your response.

[LotteM in reply to Happykaz]

Oh no. Terrible that you are so dependent on the right person. Hold on to your nice doctor! Ad maybe ask her carefully whether she can educate her fellow doctors in the practice.

Hopefully the nausea med will not aggravate ypur RLS. Also: tweaking your meds can be a tedious process and a helpful and persisting doctor i s then a much needed asset. You may not get it all right, though. Time will tell.

[Happykaz in reply to LotteM]

Thanks, I definitely will be keeping hold of my nice doctor for as long as I can and yes I will definitely ask her if she can talk to her colleagues.