thanks for everyone who has been following mums story regarding sickness for 6 months on burps.
ive had to phoned a ambulance for mum, she is now vomiting continuously with diarrhoea i’m worried her weight is too low for the brups
last night she took 1 half of a tablet at 6 and 1 at 11
it did control her rls but i am worried they hospital will refuse to give it to her when i am not there
can anyone advise. can they do this?
I am so sorry to hear this. I really hope that she will receive adequate treatment.If she is at the same hospital where she has been previously- her notes will make clear that she was recently admitted for investigations into her severe nausea and weight loss.
They should also be aware that she has very severe RLS.
If they do stop her Buprenorphine ( to see if the nausea/vomiting) stops - they MUST give her adequate RLS treatment.
That will be another opioid - like Tramadol, Oxycontin, hydrocodone or codeine.
You can write a letter to her team and express your concerns to the specialist treating her. Ask for a movement disorder/ sleep specialist to be assigned to her case.
Did blood tests show any liver or kidney issues? They should be ruling out all possible causes of her nausea.
It may be coincidence that the nausea started with Buprenorphine. Maybe there is another cause.
still here waiting with mum, shes asleep most of the time. Its hard to think this could all be down to brups but shes been feeling nauseas since october ( started brups in july)
lost 2 stone in weight as the nausea is made worse by eating
has anyone had similar symptoms from brups ?
Most people have nausea. But it does usually settle. Or cannabis or Zofran stop it.Davchar had continuing nausea which is why he played around between the pills and the patch to find his solution.
It could be that your mum is extremely sensitive to Buprenorphine.
So definitely discuss Patch for every 4 days or subutex (naloxone) with the hospital. You can ask for the 'on call' neurologist and insist they research the options.
i’m just worried they are going to try to put her back on mirapexin 
i’ve got to go around midnight as my children are at home
its a nightmare
it is odd because she didn’t have the nausea until 3 months after starting it
That's why I suspect there may be another cause.Gallbladder? I had serious gallbladder issues last year. I had nausea for months. Off food. Luckily routine MS blood tests picked up deranged liver tests and showed gallstones.
So ask them to test for gallbladder and liver issues. Wild guess but something is going on other than Buprenorphine in my view.
Oh lord. How awful. Insist they read RLS-UK website and info on augmentation and Impulse Control Disorder.And insist they involve neurology/sleep specialists.
There are other opioids. Oxycontin can be given 5mg every 6 hours or every 4 hours to avoid rebound/mini opioid withdrawals- the main symptom of which is increased RLS.
But dopamine agonists are last resort.
I will be sending positive thoughts your way.
jools sorry can i ask you advice on the following
mum is halving her burpronorphine dose
but shes also spreading it across the day, so she’s having a half at 12
the dosage on packaging says take at 6pm, 11pm
she is taking it at these times too but taking half each time instead of a whole one
i see issues with this, as they we’re trying to take it off her last week so they could administer it
the duty dr has no understanding of rls its scary. i requested a movement sleep specialist but he said he never heard of it
do you know what her rights are in these situations? worst comes worst she will have to stop the midday dose. however we really don’t want her rls playing up whilst so poorly
i hope i am making sense, writing this on the go!
I am so sorry you are experiencing such ignorance. RLS isn't taught at ANY stage in medical training.This happens all the time.
Keep detailed notes and tell doctors you are doing so.
Tell them it is essential they provide her meds at the correct dose and ON time. Failure to do so will trigger worsening, severe RLS and lack of sleep.
Show them the RLS-UK website.
Hospitals insist on taking meds off patients and then they administer them late or incorrectly.
All you can do is speak to PALS and demand that your mum's RLS is adequately controlled.
You may have to speak to medical negligence solicitors to force the team to treat your mum properly.
When i took buprenorphine (just the once) i had a very strong nausea response to the point i haven't been game to try it again.
I was telling the pharmacist about it and she said "you must have had an allergic reaction to it".
I said it didn't think so (thinking of the more typical allergic responses like itching and hives, and also knowing that nausea was a fairly typical side effect of buprenorphine) but she explained that some people are just allergic to certain medications and are unable to build a tolerance to them.
This may be the case with your mum?
Hopefully she finds a good solution.
hey thanks for reply
she definitely struggles with opioids, she did with trazadone, but with bupre, she was on it 3, months before the sickness started so its so hard to know
In that case it's less likely that it's an allergic reaction. Although a general physician that I saw advised me that it's possible to develop side effects from medication even after being on them some time. Hopefully your mum's medical team helps her get it all sorted.
sadly they don’t seem interested in helping her with the medication
Dear kirks2092,
I am so sorry for your problems. As you have probably realised by now i have done a lot of experimenting with bupre after earlier medications such as oxycodone did not block my RLS well enough.
The main side effect of successful a bupre/RLS regime is nausea BUT this has never led to vomiting in my case! The side effect, in my case, initially appeared within days of starting bupre tablets. I suspect , but please remember I am not a medical professional, that your mum's problem is not as as result of the bupre.
The only other comment I can make at this point is that your Mum has somehow overdosed on the bupre. The extended half life (can be up to 40hours )of bupre in the system means that it is easy to get the base level building up without knowing. However this would mean that RLS would not break through and from what you report it has?
Kind regards
Davchar
hi davchar
they have found she has a infection in the bowel. will see what comes of this. the vomiting she has now is a new sympton.
she is currently just taking the brups in half so her normal dose was 2mg pill at 630, then again 1130. she has changed this to half a dose at 630 and 1130 and a half a pill at midday. so lower dose overall but over a longer period.
so far with this no rls
shes so thin now i think the original dose too high, not sure if we can get rid of the midday dose but mum cant cope with rls on top of this
what are your thoughts?
Dear kirks2092,
So let's summarise....we know that your Mum needed 2x200mcg tablets per day to block RLS ie 0.4mg/day. We do not know if half will still block RLS i doubt it! So I suggest that you still need to take the 0.4mg/day but if as no patches available at the moment, you need to spread the 0.4mcg over 24hours to keep RLS at bay and the bupre concentration level below the nausea level.
I would try to take another 100 mcg (ie half a tablet) at midday and then another 100mcg at 6pm and then a 100mcg at say 11pm. The problem is that your Mum probably has a high level of burpe already in the system. The tablet takes only 45 minutes to be effective but it half life (ie remains in system at lower level for 36-48 hours)
The target should be to take the tablet in the smallest possible portions (needs tablet cutter) throughout the day and to try get baseload patches in place.
Hope this helps
Davchar
thank you, the lesser dose does seem to be controlling her rls so far.
i do worry the nurses won’t like het cutting it.
last week they didn’t want her keeping it as its a controlled drug and it became a bit of an issue
hopefully i can try to get them to understand.
i’ve asked for a movement disorder sleep specialist to be assigned but the duty dr was confusing it with her having mobility problems ( which she doesn’t) he literally has no idea
I am sending the biggest prayers for light health healing on your mama and all the strength you need to be able to get through this time . I do know that the medication she’s taking is what I have taken for 3 1/2 years or so and I was 185 pounds at 5 foot I am now 107 nausea is a huge issue which I haven’t been able to fix yet either . ❤️🩹
I’ve also had nausea & weight loss, but it definitely went away with time. It’s odd that it was 3 months before the nausea. Did they increase the amount of?
Zofran helped a lot, but I had to take it before becoming nauseated. I’ve taken Bup on and off for 20 years. I hope you Mon gets better soon
Help with my elderly mother with RLS
RlS Help
Family not understanding! 
