Side effects from all opioids

[tessnelson]

As gabapentin and dopamine agonists quit working for me, my doctor prescribed low dose opioids. For the past 7 months I have been on Methadone, Oxycodone, Delaudid and Belbuca. They all helped with my RLS and life was wonderful for a couple of weeks to a month, but then came the major side effects of deep depression or high anxiety that kept me from functioning well. I have been on a combination of Belbuca and Neupro which worked wonderfully for a month but now RLS has come crashing in and I am up at night and feeling it in the day. My choice seems to be RLS or psychosis.

I am wondering if anyone else has had this experience and what has helped them? I would also be interested if anyone is taking drugs on a rotating basis so that when one quits working they move on to another?

Any shared experiences, suggestions or insight would be so appreciated.
Thank you!

[Rustsmith]

I have only tried methadone and tramadol ER. Both work on my RLS but I am like you in that methadone caused behavioral health issues. I had deep depression at one point and later had issues with extreme apathy. To complicate matters, I also found out that I cannot take anti-depressants, including Wellbutrin.

At first Tramadol ER seemed like the perfect answer for me. Tramadol is a weak opioid and is on a different schedule from the other opioids, so that it is easier for a doctor to prescribe. It also has the chemical characteristics of an SNRI anti-depressant, so I didn't have the mood problems that I experienced with methadone. Unfortunately, Tramadol is the only non-DA that can cause augmentation and it wasn't until I had been on it for quite a while before I discovered that urologists prescribe Tramadol as a treatment for premature ejaculation in men. That discovery explained why I had been so sexually frustrated for the previous six months, which was causing a different form of mental health problem.

So, at my last appointment with my neurologist, she agreed that since I have side effect issues with both medications that begin to appear after about six months, that my treatment for the near future will involve switching between methadone and tramadol every six months. That should provide reasonable control over my RLS while avoiding the side effect problems. The only complication with this approach may be the prescriptions when I switch. Technically, my doctor can only write for seven days for the first methadone script from Tramadol to methadone. She can then follow that with a 30 day script. That complicates the paperwork, but it is better than any of the other alternatives that we have thought up.

[tessnelson]

Rustsmith,
I responded to your response to my query about the struggles I am having with opioids. I'm not sure it went through so just want to make sure that I appreciated the time you took to respond. I am talking to my doctor tomorrow and will use the information you shared to see if alternating drugs might work for me. Also, I haven't tried Tramadol, so that might be an option as well. I was reading about Suboxone, and maybe that could be an option as well. Thank you again,
Tess

[badnights]

hi tessnelson
I think you definitely should give rotation a try. The best alternation for you will probably be Neupro combined with an anti-convulsant, alternating with an opioid that you already found to be effective.

You will need a decently long washout period after stopping Neupro, before beginning again, since right now you seem to be augmented - is that your assessment too?

Supplementing the Neupro with an anti-convulsant should help keep the DA dose low and prevent augmentation. What was your previous issue with gabapentin?

Suboxone is not likely to be any different for you than Belbuca, since the opioid they both contain is buprenorphine. The difference between them is that Suboxone also contains the opioid antagonist naloxone. (It's supposed to prevent abuse. )

[tessnelson]

Thank you for your response, badnights. I spoke to my doctor and he suggested I continue with the Neupro and drop the Belbuca replacing it with Tramadol for a few days before returning to the Belbuca. Sort of a "reboot". That seems to be working so far.
He agreed with your suggestion to come up with medications on a rotating basis so we need to come up with a game plan. Neupro doesn't seem to be doing anything and I don't want to increase it because of augmentation. I already augmented on Pramipexole and that's how I arrived to taking opioids. The opioids work for my RLS but mess with my psyche.
Gabapentin never worked for me, even in my earlier days when RLS wasn't significant. My sense is that alternating medications is not that unusual?
I so appreciate your response and will watch for any responses from you or anyone else. Thank you!

[EeFall]

I have taken Suboxone for many years and before that methadone and combinations of other drugs including gabapentin for RLS. Once in awhile I become depressed and take Kratom which works incredibly fast to snap me out of it. Years ago I took Remeron (mirtazapine) which worked too but I had to take it every day and it would change my personality. With Kratom I just take it when I feel down and I might not take it for weeks or months until the depression comes back. Like everything you should research it before trying it but it works for me.

Kratom is also my backup drug for RLS in case for whatever reason I run out of buprenorphine (Suboxone). I now take the generic of Suboxone as it is about half the price. The problem with Kratom is that it doesn't always work for RLS and I would have to continue to increase the dose to keep it working.

[ViewsAskew]

Thank you for your response, badnights. I spoke to my doctor and he suggested I continue with the Neupro and drop the Belbuca replacing it with Tramadol for a few days before returning to the Belbuca. Sort of a "reboot". That seems to be working so far.
He agreed with your suggestion to come up with medications on a rotating basis so we need to come up with a game plan. Neupro doesn't seem to be doing anything and I don't want to increase it because of augmentation. I already augmented on Pramipexole and that's how I arrived to taking opioids. The opioids work for my RLS but mess with my psyche.
Gabapentin never worked for me, even in my earlier days when RLS wasn't significant. My sense is that alternating medications is not that unusual?
I so appreciate your response and will watch for any responses from you or anyone else. Thank you!

I alternate - and after severe augmentation, I include pramipexole in that rotation. Only after iron infusions, though. That has made a HUGE difference in how long I can take a DA. But, I still rotate.

[badnights]

Rotation is not as common as combination therapy. Many (if not most) of us on this board take more than one medication, but only a few that I know of rotate meds. It's not unheard of and is definitely a valid approach, but is not as common.

The tramadol-Belbuca alternation, if it works, is better than anti-convulsant with Belbuca. Lots of us have not noticed much benefit from anti-convulsants like gabapentin, except some improvement in the restfulness of our sleep.

I wonder if you are augmented from the Neupro already? You said the RLS came crashing in after a while during which everything was good. Did anything else in your life change at the same time? A new medication unrelated to WED/RLS? New supplement? Stopped a supplement? Change in diet? In activity level? Did you start an anti-histamine?

If nothing else changed, then the most obvious reason for worsening would be augmentation. Although augmentation usually happens on higher doses and after longer times, it can happen on low doses or after a short time for some people, so please consider if you might be augmented.

[Frunobulax]

As gabapentin and dopamine agonists quit working for me, my doctor prescribed low dose opioids. For the past 7 months I have been on Methadone, Oxycodone, Delaudid and Belbuca. They all helped with my RLS and life was wonderful for a couple of weeks to a month, but then came the major side effects of deep depression or high anxiety that kept me from functioning well. I have been on a combination of Belbuca and Neupro which worked wonderfully for a month [...]

I got serious depressions after coming off dopamine agonists. Took me maybe 2-3 years to get over them. Just a thought: Maybe it's not the opioids, but a withdrawal from dopamine agonists that's causing the depressions? In this case, the depressions would be gone because you're back on Neupro.

[tessnelson]

Thank you everyone for sharing your experience and things to think about. My history is that the longest anything has worked, psychologically & for RLS is a month, so my doctor agrees that rotation is required. The RLS has been the worst in the past 3 weeks and quarantining could be a factor, but not for the trouble I have had in the past 9 months. I have changed my diet a bit and a new supplement so I will look at that. After 3 weeks, I have been on a high dose of Pramipexole that finally broke the strong RLS for 2 nights. Doc said I can't stay on this for very long but maybe that will be in my rotation? Also, I am getting a blood test to recheck my iron. So many variables and a continual journey. Nice not to be alone with it. Thank you!

[ViewsAskew]

So many variables and a continual journey. Nice not to be alone with it. Thank you!

Definitely true on both counts!

[CLB]

I have read all of your posts. I have refractory RLS. I take Oxycodone 5mg. and try to stay at only 1 1/2 tablet a night. I have been doing this the past year or so and it's not working all that well. I can get 7 hours of sleep but it is all in small segments of one hour here, one hour there, maybe 2 hours in a row if I'm lucky, then another 1/2 hour, etc...so by morning (if I have long enough in bed) I can add it all up and sometimes have 6- 7 hours sleep, which of course is not good quality sleep. When you all talk about rotating drugs, does this then allow for a good night's sleep?

[QyX]

7,5 mg of Oxycodone is still such a low dose for RLS.

Is it possible to try a higher dose like 10 - 15 to see if your sleep improves?

At your current dose, your tolerance is still so low (relatively speaking) that it is not worth creating some complicated rotation system. When you have one drug that works, then you want it to get working as best you can, if possible.

If increasing Oxycodone is not an option then see if you can get add an antiepileptic added. These often have the potential to improve insomnia. You could then explore with Kratom if you would benefit from higher opioids doses. In theory you also could rotate between Kratom and Oxycodone but again, your dose is so slow, that it barely makes any sense.

Why exactly do you think you can't stay asleep at night? Do you develop RLS symptoms, is the Oxycodone alerting or are you simply not really tired?

In that context: I do opioid rotation between Morphine, Oxycodone and Hydromorphone. I had to start doing it because I was already taking 180 mg of Morphine daily (=90 mg Oxycodone) and dose increases didn't have an effect anymore. Basically I simply split the average dose between these three opioids so that I don't take too much of any1 single one opioid. Hydromorphone is the weakest opioid for me, so I take it during the day. Morphine & Oxycodone have both their unique strengths so I always take them together and I couldn't remove the Hydromorphone but that would increase my average daily dose. As long as I am stable at maximum 200 mg / morphine per day, my doctor is just fine with the situation.

Limiting the dose to 7,5 mg of Oxycodone for RLS is just not practical when those of us who need potent opioids often need at least 8 mg Hydromorphone or 10 - 20 mg Methadone per day which would equal 20 - 40 mg Oxycodone. But I can understand and see that your doctor has a different opinion. So the solution would be to see if either Gabapentin or Pregabalin can help you. But I have to say, keeping your Oxycodone dose so low long-term might not be possible at all but with Kratom you would have an option if that scenario should happen.

Also: if available and an option, medical Marijuana can really boost the effects of opioids significantly, especially its RLS analgesic properties are extremely powerful and even horrible symptoms can be controlled within minutes when vaping it. Additionally it helps with the insomnia. I guess that's what I would look into and then see if I can survive on just 7,5 mg Oxycodone a bit longer.

[srgraves01]

I rotate from methadone to mirapex .25 mg, 300 mg gabapentin and alprazolam .5mg to 1.5mg, depending on how well it is working. After augmentation I developed jerking and the alprazolam does a reasonable job of stopping the jerking. The problem with alprazolam is you develop a tolerance for it and it also causes mental confusion -- so I try to minimize the amount I take of it. I don't have the depression but opioids stop working for me after a period of time.

Steve

[ViewsAskew]

I have read all of your posts. I have refractory RLS. I take Oxycodone 5mg. and try to stay at only 1 1/2 tablet a night. I have been doing this the past year or so and it's not working all that well. I can get 7 hours of sleep but it is all in small segments of one hour here, one hour there, maybe 2 hours in a row if I'm lucky, then another 1/2 hour, etc...so by morning (if I have long enough in bed) I can add it all up and sometimes have 6- 7 hours sleep, which of course is not good quality sleep. When you all talk about rotating drugs, does this then allow for a good night's sleep?

I imagine we rotate differently.

My primary pharmaceuticals to control the movements are methadone and pramipexole. I sometimes use gabapentin (but, rarely, as it can cause depression for me) for sleep quality, but usually use something used for bladder control - I found out that - for me - it helps counteract the constant waking that occurs from the pramipexole. I also sometimes use edible marijuana. I haven't found the "right" one, yet, as what I've been taking actually makes me sleep TOO long, so that I don't want to get up AT ALL. If I take less, I still wake up, so working on that.

I rotate the methadone and pramipexole to control for augmentation (pramipexole) and tolerance (methadone). I take higher and lower doses over time, also taking breaks. It's sort of a dance I've figured out for me, based on my issues. That is why I'd guess we each do something different - we might be controlling for different things.