Hi All, as you know I have now been on buprenorphine tablets (low dose) for 10 months with HUGE success.I have recently flown 11 hours from Heathrow to Arizona with NO RLS. My legs did go crazy for my first few days in the US until I worked out the time difference.
My question is has anyone lost weight & appetite taking buprenorphine??
I have done both in the last 4 months.
I have flagged the weight loss up to my GP & he sent me up to have blood tests and I await the results.
The tests may well show other medical problems but a friend said to me "are you sure it is not the buprenorphine".
Before my GP rings me next week to discuss the results it would be useful to know if anyone on the forum has suffered from loss of appetite etc.
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Simkin
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Ha! I have been debating with myself whether to present this question to the RLS community. I have been on Buprenorphine myself for about 4 months and my RLS has to a large degree been eliminated. However, I have also experienced some weight loss. I am not sure it coincided with starting to take Buprenorphine but I have lost about 20 pounds and I was not really a heavy person. Perhaps there are other health issues that could explain my going from 185 to 165 but I just had my yearly physical which included blood test and my doctor found nothing out of the ordinary.
Let us know how your visit to your GP goes. I am very curious what he or she might have to say. Take care.
Gosh that is so interesting. Thank you for sending that link from one year ago (I think I joined the forum just after that).That may well explain my loss of weight & appetite.
I haven’t experienced it myself. However, it is a listed side effect. It may be difficult to handle if you already are a lean person. Don’t ignore it. Good that you brought it up here.
Just thinking ahead: maybe consider switching to methadone.
I'm on methadone last four months and have a similar concern. My appetite is noticeably reduced and my weight is hard to maintain. I'm very light and some say I'm too thin already. Others may not have this problem I suppose. All the best for your results.
I have read your post with so much interest. I have wanted to write about this problem for quite some time, always postponed it.
Yes I experienced quite a loss of weight and loss of appetite. When I started Buprenorphine (Temgesic 0,2 mg daily), I had some health problems at the same time (teeth - owing to Gabapentin/Pregabalin which I took before Bup.), removal of gall bladder) .These problems caused some loss of weight but not appetite.
But all this was nearly 3 years ago and since then I have been taking Temgesic (Bup.). I was not able to get back to my normal weight and have had a considerable loss of appetite. I was never a very great eater but nevertheless liked to eat. and enjoy it Nowadays I very seldom enjoy eating.
My doctor (a GP who knows about RLS quite a great deal) says it is known that opiates may cause weight and appetite loss and she has quite often heard about it - and I should force myself to eat.
As a summary when I started Buprenorphine the problems with losing weight and loss of appetite started and have been ever since.
I am quite sad about it because to enjoy ones food is a good thing. I have been thinking about adding some other medical substance to my medication which stimulates appetite, but so far I would not know what to take. Things like bitter vegetables, apple vinegar etc do not help. I have been thinking about a tiny dose of antidepressant (Wellbutrin) which should add to weight but on the other hand I heard that it makes more tired.
And being overly tired is another minus of Temgesic which I have to cope with.
But all these are lesser problems than sleepless nights. So I have to put up with it.
Hausbauer, I have been taking Buprenorphine for almost 4 months and I have also experienced a considerable weight drop. 185 to 165. You mentioned trying Wellbutrin as medication to counteract dropping pounds. I started taking Wellbutrin because of anxiety and depression, another side effect of the Buprenorphine, and I have not put any weight back on. I have been checked out by my doctor and don't seem to have any other health issues, though if I think about it enough I am sure I can convince myself that I am suffering from many other syndromes and diseases.
I should add, as you noted, these side effects are nothing when compared to the symptoms of RLS.
I have been on a low dose of buprenorphine for several months and have not noticed any significant weight loss except that probably due to due to a reduced appetite caused by severe nausea. Nausea of course is a well known side effect of buprenorphine.
Have you experienced any nausea or excess hot/cold sweating?
Hello Simkin, I am very happy for you that Buprenorphine is working so well for you but I believe one of the side effects is loss of appetite which could result in weight loss. I have no medical training it’s what I’ve read about the drug on side effects. Probably not a bad idea to have it checked out to make sure there aren’t any other underlying issues. Good luck and best wishes
Tried cannabis? That stimulates appetite for most. I take it to help sleep, but it always gives me the munchies for a couple hours. Edibles with opioids were bad for constipation, but vaping or tincture avoids that problem.
What type of cannibis. I thought you were not supposed to take it when you were on opiods. I tried the gummies and vaping (could not vape) but I was afraid to up the dose because I was taking oxycodone. So they did not work. My son vapes and his rls is completely gone. You have no problem using both?
I use a vape pen and an Indica THC strain (THC is what makes you high; CBD is the other type - various health benefits claimed, but no high. Indica is relaxing and makes you sleepy; Sativa is the other and makes you a bit more alert - would be fine if you want to use it at least several hours before bed if you just want to stimulate appetite). With the vape pen, I just take one short puff. Like with any new med, take it slow to see how it affects you. With a tiny bit of cannabis and a fairly low dose of opioid, I doubt there is any risk of impairing one's breathing - the concern about combining opioids with another sedative-like medication.
You may have tried a CBD-heavy strain of gummy. Very few people get any RLS relief or sleep aid with CBD (some do...); most need the THC. If you can't vape or smoke, you could try a THC gummy - just be aware that it might be constipating for some. A tincture that you just put a few drops under your tongue is another option.
I found your post from 7 months ago about trying gummies. You used a package that said 20mg CBD, 1mg THC (per your post). That is the total amount of CBD/THC in the whole package, so an individual gummy would only have 1/10 of that (assuming ten to the package). That is not nearly enough THC to have any effect. Try some that are 5mg THC per gummy if you can find that size, and then start off with 1/3 or 1/2 of a gummy to see what affect it has on you (giving it an hour or more to kick in before taking more). I don't think the cannabis provides more than slight RLS relief for me, but it does help with my sleep. I pay less than $20 for a package of 20 gummies containing 100mg of THC total here in CA.
I have also experienced this weight loss from Buprenorphine sublingual. I was overweight but have lost over 40 lbs in the last 2 years. My doctor is aware of this and overall my health has improved. The RLS is stll a problem but not what it had been. The last few months I have had to increase the Buprenorphine to get better results.
I hope you don't mind if I ask a couple of questions? Did you increase your dose because the Buprenorphine became less effective over time or were you just trying to get better results? And secondly, what dose are you taking? I have just started Buprenorphine sublingual. Initially, .5 mg was working well. However, after two weeks, I needed to increase my dose to between 2 mg and 4 mg. Needless to say I was alarmed to need an increase of 4 to 8 times my original dose. I have a note into my neurologist. Hopefully, he can enlighten me as to what is too little and too much.
I use the 2mg/0.5 sublingual film. I had taken 2 films in the beginning (a year or more ago) as my RLS was quite severe. I cut back to just 1/3 of one film for awhile was slept for about 6 - 7 hours a night. After awhile, I needed to increase to 1/2 film, then to 3/4 film in late winter. A few months ago, I started taking 1 film each night as the RLS was increasing. For the last week, I am now taking 1 and 1/2 film each night. My prescription is for 2 films each night. I seem to be more concerned about it as my doctor says it is still a low dosage and it is more important to get a good night's rest. I do keep a journal each evening and write down when I take my medications and how much I take. I also note each morning how long I slept and rate my night.
May I ask how long have you been at 8 mg and do you stagger you dose? After 3 weeks, I am still trying to figure out the right amount of Buprenorphine for me. Last night, I needed 4 mg to cover me until the morning. The 4 mg was staggered over 10 hours. I started with 2 mg at 8pm. At 1am my feet started burning slightly so I took another 1 mg. Then another 1 mg at 5am when my feet started to burn slightly again. Then I slept pain free until 9am.
Like everyone on this site I would like to take as little Buprenorphine as possible, but it's not easy figuring out what that amount is. I have only been using Buprenorphine in tablet form for a short time. I switched from a 20 mg patch 3 weeks ago. My initial dose with the tablet was 1 mg and it covered me through the night. This amount worked for 10 days. Then one afternoon I woke up from a nap feeling terrible. Burning legs and feet, flu like symptoms throughout my body. The following day, I upped my dose to 2 mg and still had some mild burning. I have been upping my dose since then to cover my symptoms, trying to determine the right regime and dose.
It has been speculated by my doctors and members of this community that the burning might not be RLS, but that is another story longer than War and Peace. Let's just say that I am relatively sure it's RLS. I never have the burning and the classic RLS symptoms at the same time. I am pretty sure the creepy crawly, jerking, can't sit still for a minute symptoms don't just disappear when the burning starts. But that's the way it has worked for the last 2 years. Burning then jerky, then burning again, but never at the same time.
I don't seem to be able to write a short post. Sorry.
I'm really surprised that 1mg worked for 10 days then seemingly changed so quickly. If you are taking it all at once, maybe you should split into 2 doses, 12 hours apart? Buprenorphine's long half-life supposedly means that mini-withdrawal from it is unlikely, but I've noticed several people here who do appear to have withdrawal symptoms the next day, and splitting doses solves that. I also suspect that mini-withdrawal is more likely since you were on the patch for a while. The body gets used to 24/7 medication.
Mini-withdrawals as a result of the change from the patch to the tablet is an interesting hypotheses and makes perfect sense. I am going to try your suggestion and see if I can get by using less Buprenorphine. Thank you so much.
Give it a few days to settle down after you start with a daytime pill. You might have some reaction to cutting the dose back if you’re going from 4mg down to 1 mg at night. You might need to taper a bit.
One of the problems with adjusting doses is that the pills are so small. When cutting one in half, it is almost impossible to keep one half from crumbling away. I am really trying to make my tablet prescription last because in Brasil, where I live, only the patch is available. If I can, I would like to avoid losing half of a pill. Any suggestions on addressing this issue? Perhaps the jewelry scale SueJohnson often mentions is a possibility. Thanks
Sorry - I can only get the strip, not the pill. So I don't have experience cutting these pills. (It's easy to cut the strips without any waste.) I don't know if you can gather and use the crumbled pieces (or the shavings that Sue mentions)? I would think so. I assume that using a jewelry scale doesn't help with the actual cutting, just with weighing the end result so that you have more accuracy.
Our stories are really very quite similar and I’m sorry, but my memory is so lousy that even thinking back three years or so ago I am not doing so well correct information so forgive me for that but I know it was up to about two months before I settled at 8 mg And Dr told me that was the highest dose and now I’m having breakthrough sensations to the body so I’m getting extremely worried. I understand the burning sensation. I have it coming and going but not very often. The doctor has added SINENET to take no more than three days a week for breakthrough, restless legs, it hasn’t helped yet but it was only the first week. This is so complicated. I’m not even sure I’m making sense for you hon. .
You are making sense, especially with your observation that this is all so complicated. I feel the same.
It is difficult to manage and understand the ever changing moods and symptoms of RLS. The mood swings along with depression and anxiety are making my home life difficult to manage, especially for my family. They never know which person they will meet when I wake up every morning. I don't even know.
Sounds as if you are really going through the ringer. I hope you can get it sorted out soon. Most here understand how extremely difficult it can be. I wish I could offer you help. However, there are many knowledgable people here, perhaps there is someone who could offer you guidance. I hope so.
No one has referred to me as hon since I left North Carolina 40 years ago. I quite like it. One thing I can tell you that is absolutely true. When you move to another state or even country, RLS follows. It's too bad because I have move a lot.
my grandma and mama brought us girls up to say things like sweetie and honey pie. I do get some strange looks sometimes, but I want to say thank you for your concern. I am plugging ahead head as we all and shuffling shuffling other conditions. This is a great place to be. It really is comforting when you can relate to others so thank you and I want your road in life to go better too.💜
Yes, I've gone from a muscular 176 pounds to a much weaker 154 pounds in about 6 months on small doses of buprenorphine. Now I take 3 table spoons of olive oil per day as a calorie supplement in addition to forcing myself to eat even when I have no appetite. Now I'm slowly gaining back the weight. I'm also lifting weights and walking more.
Hello, yes I have lost weight since going off dopamine agonist medication and starting on low dosage of Buprenorphine. I only eat when I am hungry now. I had an eating addiction while on the dopamine agonist medication and put on 30klgs over a 10 yr period. Most of that has come off in the 3 yr period I have been on the low dose Buprenorphine. Kind regards Julie from Western Australia.
I am on methadone vs and have similar symptoms as you do on buprenorphine. I have been on it for 4 1/2 months and lost 23 pounds in that time, although the weight loss is now slowing and my interest in food gradually improving. I am also having a hard time managing my severe constipation. Other symptoms I still have is hot/cold and sweats, and I still have breakthrough RLS symptoms at night. I am currently on 8.75 mg. You might find same on methadone as you do on buprenorphine?
Hi yes definately to both . Only been on it 7 weeks but have lost quite a lot because my appetite is poor and a bit of nausea at times . Im not complaining tho because I needed to lose some weight as I piled it on with the Gabapentin which Im slowly weaning off .Hope that helps
Im finding that I have to eat what I fancy as well at the time . Always had a big appetite but thats gone . When I was withdrawing off the Da's I ate loads in the night and nothing healthy !
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UK RLS sufferers this is for you.
