Hello everyone & especially Sue & Jules. I have now had 4 blissful months sleep on 10mg of Oxycodone.I have now successfully reduced my gabapentin from 2,100 to 1,500mg. But am now starting to get one breakthrough session of rls a night & am worried it will get worse.
Should I stop reducing the gabapentin & stick to 1,500mg?
I know my GP would like me to reduce further
What do you think?
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Simkin
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There are 3 possibilities that I can think of. As I remember you were reducing the gabapentin because it didn't work so one possibility is it did work. The second possibility is you need more oxycodone although normally once one finds a dose that works one doesn't need to increase it. . The 3rd possibility is you changed something, possibly a change of diet or exercise or who knows what. I will be interested in what Joolsg has to say.
You are getting the nighttime breakthrough because you take 10mg oxycodone just before bed. Oxycodone has a short half life. It will only cover symptoms for around 4 hours.Dr Buchfuhrer and other US experts, often say that 2 medications at lower dose often work better than 2 medications at higher dose.
You are on a low dose of both oxycodone and gabapentin. Until now, it's worked well. The saying 'if it ain't broke, why fix it' springs to mind.
I would therefore stay on 1500mg gabapentin and 10mg oxycodone. I would even suggest adding 100mg of gabapentin a night to cover the breakthrough. How are you taking the gabapentin? At night in 600mg doses 2 hours apart?
As Sue says, the gabapentin was clearly helping.
Why does your GP want you off gabapentin? It is first line treatment after iron pills/infusions.
I’m going to throw my 2 sense in on this conversation even though it’s been a month!! I’ve been on an extended release oxymorphone 10mg 2x daily and immediate release oxycodone 10mg for at least 7 years. Previous to the 7yrs I was on a higher dosage of both. I was living a normal life for years on the higher dosages. Then here in USA CDC, DEA and other government agencies decided they knew better then people’s Doctors! To add insult to injury every person was basically lumped into one category! Your on painkillers?? Omg!! So a formula was put out to doctors with a notice written by one of these agencies can’t remember who saying it must be followed can’t go higher then I believe it is 90mg total! No matter what! Then it was discredited. They took it back. But by that time every doctor was scared to lose their practice etc. That they took their patients off their meds. Or lowered them a lot hence my situation. So I went from quality of life to now barely making the month with the meds I have. Because it’s not enough for my situation. Which is chronic pain from severe osteoarthritis, ankylosing spondylitis & psoriatic. With the added bonus of mine & yours little demon that lives inside us!! Our RLS worst nightmare enemy!! I always wind up taking extra of oxycodone, bc most times I’m having an episode it will help alleviate it so that I can sit down lay down and sleep!!!
I go to a pain management doctor she will not budge on even adding another dose. So my life has turned into living like a damn addict because I’m constantly counting them etc so afraid I’m going to run out and not only have withdrawal symptoms for a day or two even, on top of that you get RLS it’s horrible. But here in USA a pain management doctor that will prescribe the RXs are very very few!! Most just want to give you injections! That’s all well and good but it’s expensive! With insurance you have to pay deductibles mine are close to $3000.00!!
I’m sorry I went off on a self tangent!! So after giving you all a sort of short synopsis of my issues my point for adding my 2 sense is this:
In my opinion because I’ve been on pain medication for many years at different dosages and for at least 10 years I was great! I never had an episode of RLS . With the higher doses of each and .5 pramipexole about an hour bf bedtime, and Gabapentin and my other meds for the arthritic conditions.
I wholeheartedly believe that pain meds are a Godsend to RLS patients!! I could elaborate on why but I’ll digress. Just an aside the doctor I had back in 2000’s was a founder of the RLS foundation here in USA Dr Arthur Walters who is now at the prestigious Vanderbilt Institute in Tennessee.
Sorry for this long rant!! Btw
Sue & Joolsg are you two sure you’re not doctors in another life?? Bc you both are invaluable on this site!! I can’t believe the information you both provide to people on here. You know everything!! I thought I knew a lot about this crazy dis ease but no…,
That sounds like a really low dose of oxycodone. I was told by Johns Hopkins that 15 mg is the minimum with 20 being optimum. I’ve been doing 15 mg for the past five months and it’s been fairly blissful. I take no other drugs for RLS. My doctor says that oxycodone doesn’t need an additive drug. Just passing this along. Oxycodone doesn’t last long in the bloodstream only about four hours so upping the dose may really help your situation and let you get completely off gabap.
What is amazing about this site is the widely conflicting advice on all the many many many remedies. When it comes to opioids, it’s very simple to pull clinical trial white papers off the web that go back eight years and give you good data on efficacy, dosage, the potential for addiction etc. On that last point, in all the white papers I’ve read addiction outcomes Is almost 0% in those trials.
I suspect one reason for differing and conflicting advice is that people react in different ways to drugs, a simple example being that some get side-effects and others don’t. In the same way, the efficacy of drugs and the required dosage may vary from person to person. People tend to nase their advice on their own experience and that of others which may be different to the expectations of the drug company.
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