Several persons on this site have already helped me but I want to ask the general following about the use of Buprenorphine for treatment of RLS. and its augmentation
After testing in vain, pregabalin, oxycodone several other less well advertised RLS treatments I got agreement from my GP to try Buprenorphine tablets and at 0.4mg per day I successfully "blocked|" RLS but I have to accept the following side effects:-
-anxiety and depressive feelings
-all day tiredness despite a fairly good sleep pattern (6/7hours)
-sweating especially after breakfast
-balance problems
Note I am still taking 75mg /day of Pregabalin but have decided to come down to 50mg this week.
I would appreciate any comments on above from fellow members
Kind regards
Davchar23
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davchar23
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Sorry to read this, Davchar. I recognise above all the tiredness. And the sweating.
In my case, the sweating settled with resuming HRT, but as a man that is no option for you. Also, I do know that opioids may reduce gonadal hormone levels, but I don’t know whether reduced testosterone causes or is associated with sweating.
Generally, side effects settle or lessen in a few weeks, and you may have to give it a bit more time.
Jools has experience with the anxiety and took a low dose pregabalin for several weeks. Check with her.
I think Jools also has experience with the sweating and takes an anthistamine to counteract it. Check with her too. Cetirizine and loratadine are safe.
I don’t have anything to offer re the balance.
As to the tiredness, I have been given methylphenidate, which helps a little for several (~3) hours. Taking it repeatedly over the day (not evening and night!) gave me a restless and uneasy feeling after a day or two. I now only use it occasionally when I need energy and focus for a few hours.
I often find it difficult to still be so tired despite good sleep. It has been several years like that for me now. I sometimes contemplate to come off the buprenorphine, but the RLS is still severe. In your case, however, the tiredness may still be the long time of bad sleep from which your body has to recover, but tiredness is a frequent side effect.
I sincerely hope someone comes along with a silver bullet that works for you.
Thank you for replying and nice to her from you again. i hope you RLS pathway is still clear?
Whilst I have this awful anxiety/depressive feeling I am of course very pleased to have, at least for the present, quelled my severe RLS. I don't expect, at least in the near future, a silver bullet but I would just like to get to a stable position and hence my recent post. The more information I get, and your reply is part of that for sure, the more confidence i have to keep tackling my doctor with my situation. Unfortunately he is simply going along with me to get me out of his surgery and so i am the one who proposes things he simply provides the drugs. If I had left things alone I would still be (a) on DAs or (b) on masses of pregabalin.
I have another appointment at which he promised to discuss all side effects but there is only so much you can get through in the 10 minutes before he shows me the door!
I am sorry you have a lot of tiredness. I find that if I force myself to do exercises and keep active (not easy when you feel lethargic) then I get through it. i have not heard of methylphenidate?
Davchar, methylphenidate is the substance name of Ritalin, better known for its use for ADHD. In The Netherlands it is mentioned in the NHS-like treatment guidance for cancer-associated tiredness. As is dextroamphetamine. RLS specialists in the US also mention modafinil. Various studies show that indeed there is some positive effect but generally modest. Which corresponds with my experience.
I try to live with it. Forcing helps a bit, but the lethargy makes that difficult. But having virtually no RLS is a big bonus!
I have tiredness that wears off about mid day. I had crazy hot flashes and sweating on Pramipexole and that stopped when I went on Buprenorphine. Maybe I haven’t been on it long enough( 4 month now). I am chronically depressed, got worse once I weaned off Pramipexole. No better or worse on Buprenorphine only. At least the RLS is controlled.
Sorry to hear about the depression, teakabeagle. I do hope it is a result of the endless sleeplessness due to the RLS and that you now slowly start to recover with better sleep.
With buprenorphine I find I wake after an hour and I am as bright as a button so save my emails etc for the middle of the night.Consequently I am tired during the day and have to have an afternoon rest which at our age we can do.
Interesting about sweating. I find I particularly sweat on my forehead so have to walk round with tissues.
I had not connected it to taking buprenorphine.
I have not mentioned these side effects to my GP as with taking gabapentin & buprenorphine I am reluctant to ask for yet another drug.
Thank you for your reply. I understand your reluctance about more and more drugs....they all confuse each other?
I take a small (75mg/day) dose of pregabalin as well as the buprenorphine tablets but i have read that the two don't "mix" all that well. i know from Joolsg that she has used both for some time but i am trying to get off the pregabalin as it affects my balance.
I do not suffer, as you do, for the buprenorphine making me wide awake (i take 2x 200mgc one at about 9pm and one at 11pm)
I will just add what I take, as I know not everyone experiences side effects.For sweating, I take a non sedating anti histamine, cetirizine, every night. It reduces the sudden head sweats in the daytime.
For anxiety, pregabalin works, but as it causes you dizziness, I know you're trying to reduce. Ask your GP for trazodone, or an occasional diazepam.
The tiredness is something I just accept. If I fall asleep in the daytime, I now embrace it after 10 years of severe sleep deprivation and severe RLS.
Also, many side effects DO settle after several months. It's still early days for you.
I don’t tolerate any ‘safe’ drugs such as the ones you mention, so they are not guaranteed to help everyone. Age will play a role in drug intolerance, so just mentioning this since davchar23 is 81.
I have had a suggestion from kakally on this site that i might reduce or eliminate my depression/anxiety by changing back to buprenorphine patches. I changed from 20mg (2x10Mg) patches (=0.48mg /day) to 2x200mcg tablets (0.4mg per day) and as I remember I had less problem from anxiety etc on patches but could not "control" the overlap and period of effectiveness.
Have you any experience of this ie patches preferable to tablets as far as side effects are concerned.
I have never used the patches, mainly because I did so well on pills and have heard so many stories of them 'running out' before the 5/7 days they are supposed to last.
Lotte switched to patches due to tiredness on the pills.
You could certainly go back on patches and see if the anxiety/ depression lift. But, bear in mind, the anxiety on buprenorphine didn't hit me until I'd been taking it for 5 or 6 weeks and it would seem it hit you around the same time.
Your GP seems very proactive and helpful, so ask if you can try the patch again to see if the anxiety lifts.
I have those problems as well and nothing much helps other than keeping a fan running through the night to keep me cooler. The depression and fatigue along with the sweating are so awful I’m trying my damnest to keep the dose below 350 mcg. You may have seen my reports on Bup.
I am taking Buprenorphine and am waking in the night with horrific feeling of overheating .. I am so hot I have to go and stand outside to cool down. I have put it down to a side effect of the drug - not sure if anyone else has this side effect ?
No I am sorry but i do not have that problem. i take 400mcg buprenorphine tablet under tongue at night and my side effects start next morning mainly ie nausea, shortness of breath, depression and anxiety.
I don’t know if you might be better on Butec patches (buprenorphine). They are meant to be changed once weekly but many find they only last about 5-6 days .
They do help a bit but I do get some anxiety which is not my usual nature and is unpleasant but I’m just wondering if it could suit you better than the tablets.
I have had most things and am helped massively by iron infusions which get topped up when my ferritin falls below 400ug/L and symptoms return badly… but……
I would so like to try low dose methadone, but in the U.K. it seems impossible to get hold of it from anyone but someone who gets them ‘underground’ .. but then of course you can’t be sure what substance you’re getting and it may well be a fatal chemical. I even went to a drug dependency clinic and they wouldn’t barely even talk to me about it, let alone give it to me. It was disappointing
Thank you for your reply. I did try buprenorphine patches before I asked the GP to change me to tablets. My problem with the patches is I couldn't seem to control how long they lasted and therefore when to change them. I cannot see why patches should act any differently to tablets as far as depression/anxiety is concerned. I think i will ask Joolsg and Sue J to see if they know. Thanks again for your suggestion
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