Fighting opioid tolerance

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
QyX
Posts: 316
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Fighting opioid tolerance

Postby QyX » Sat Feb 18, 2017 1:19 am

At some point I finally came to a point where being tired and falling asleep was no longer a problem. Also my opioid dose was stable on a equivalent of 150 mg Morphine. This is not in the super low dose area but after being on opioids for over 4 years and having severe RLS with a strong pain component I was happy, my physician was happy and my psychotherapist who always had here issues with opioids was no longer complaining.

In the December and January Morphine slowly lost his efficiency. Generally it still worked but for the symptoms between 10 p.m. and 5 a.m. ... the core time were normal people should sleep, it only worked 70 - 80%. There were some mild symptoms who made it impossible me for sleep.

I do not take only opioids to treat RLS but the other drug I take, Carbamazepine, is already maxed out.

Raising Morphine didn't help and I do not like it because in the end I have to reduce the dose anyway.

In the end it turned out that I had to switch back to Oxycodone. Now I am scared that the same thing will happen to me with Oxycodone. Before I had this problems with Morphine I had them with Hydromorphone. Hydromorphone worked around 18 months for me and Morphine also 18 months. Before that I was switchting between Oxycodon and the other drugs much more frequently.

I have a strong fear that I have to take Methadone and one point. Personally I would love to stop opioids for a couple of months but my RLS has a severe pain component. It is really bad and I am just 32 years old. I would put a pause on medical school but I would need some kind of substitute for the opioids, even a bad one but there is no drug that I tolerate or even remotely works except opioids and Carbamazepine. And Carbamazepine is maxed out.

My university has a special new departement for pain management. My doctor will get me an appointment at some point in the future. She switched me to oxycodone without a word or protest. It is just that I consider it unlikely that I wont get tolerance issues on oxycodone. Oxycodone always was my reserve drug. Now I depend so much on it. I have lost my safety net and for those who don't know me: In the past years I tried over 50 different drugs. I really tried like every drug available on the market. This is why this feels so scary...

Stopping opioids for a couple of months most likely will improve my situation a lot. Reducing the dose is possible but I would need a full stop for 2-3 months. I don't know how to do this and my doctor has no clue either.

ViewsAskew
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Re: Fighting opioid tolerance

Postby ViewsAskew » Sat Feb 18, 2017 3:39 am

Tolerance is a huge issue - for us and people with chronic pain.

I did find that taking a month off was very helpful. But, I could use something else for that month, you cannot. Now that I've both reduced tolerance and had my third iron infusion, I'm using about 40% of what I was using. And, I am wondering how I prevent tolerance again so that I don't have to take another month off down the road. I don't envy any of us here.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

QyX
Posts: 316
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Fighting opioid tolerance

Postby QyX » Sat Feb 18, 2017 2:30 pm

There simply just must be something I can use.

Right now I get 60 mg Oxycodone, 20/10 mg Targin (a combination of 20 mg Oxycodone and 10 mg of Naloxone to avoid obstipation) and Jurnista 8 mg (this is a 8 mg 24 hour Hydromorphone tablet). I also have 60 and 30 mg Morphine pills left, around 80 each because I developed the Morphine problem right after I got a new prescription for Morphine.

I was so lucky that my physician believed me and prescribed Oxycodone without any discussion.

But the situation is still a mess.

Before I went to the doctor I tried reducing Morphine. So I took less, fell asleep, had a horrible nightmare (my hole family shot to death by terrorists) and then woke up with the feeling that my foots were burning, like somebody put petroleum over them and lighten them up. I had this two days in a row so reducing is really complicated.

Okay, I could go to a hospital, they put me on Methadone and reduce the dose but with these kind of symptoms it is impossible. Exactly these kind of symptoms were the reason why I got prescribed opioids in the first place. This is not something that will go away.

At the moment I feel a bit doomed.

And with my messed up brain I can't even take Benzodiazepines as long as I take Carbamazepine and Carbamazepine seems for me much harder to reduce then opioids.

When you are drowning in opioids, then you know you have a problem.

legsbestill
Posts: 348
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Fighting opioid tolerance

Postby legsbestill » Sat Feb 18, 2017 9:24 pm

That is extremely worrisome, QyX, it is hardly surprising you are feeling so low. I guess you are already well familiar with the contents of the webinar posted by Dr. Early about the various opiates. I cannot imagine Kratom would suffice for such severe symptoms as yours. I remember reading how pleased you were with Carbamazephine; it does not sound like reducing that is a viable option for you. It is like a nightmare come true.
Perhaps the pain management department at your university will have some suggestions. They must have encountered these sorts of problems. Is there any chance that switching to Oxycodone/Oxycontin will give your receptors to Morphine a break and allow them to re-set? I totally understand if you want to throw abuse at the reply button if this is a really stupid question. I do not have anything like your knowledge.
Try not to despair. You do also have the option of methadone even though I know you are very against it. It is at least another possibility ...

QyX
Posts: 316
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Fighting opioid tolerance

Postby QyX » Sat Feb 18, 2017 11:45 pm

Is there any chance that switching to Oxycodone/Oxycontin will give your receptors to Morphine a break and allow them to re-set?


This is what we are hoping for. It is possible, yes but given the fact Oxycodone, Morphine & Hydromorphone are chemically almost identically and back then switchting from Hydromorphone to Morphine didn't help in making the Hydromorphone work an I am pessimistic that it will work with Oxycodone and Morphine this time.

Your question was not stupid and this is what I actually did. The problem is that all these substances are as mention above are almost chemically identical.

Methadon however would be different and it may come to a point were I'm forced to take it, at least for a while and fight and scratch my dose down as hard as I can tolerate.

I am still pleased with the Carbamazepine. Without it sleeping and pain management would not be possible. I am so grateful to have it.

The outcome of my current situation is not set. Nobody knows if Morphine will work again after I took Oxycodone for 6 - 12 months. Hydromorphone didn't but the way I developed a tolerance against Hydromorphone was different then from Morphine. WIth Hydromorphone it almost came over night. With Morphine it was a slow progression and Morphine still worked good enough to get through the night. I only had relatively mild symptoms but still enough.

So this is the source of my hope but seeing all these opioids on my night desk scares me and makes me sad.

The Germany House ("Bundestag") passed a new law. From the 1st March on medical marijuana is much more easier to get and the insurance has to cover the cost 100%. Maybe I should give it a try. I have no clue what to ask for and which kind of marijuana will be available. And of course no Doctor will no anything how to use it for RLS but given the situation that I get a prescription for high potent opioids it should be possible to obtain a script for medical marijuana.

stjohnh
Posts: 317
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Location: Palo Alto, California

Re: Fighting opioid tolerance

Postby stjohnh » Sun Feb 19, 2017 12:33 am

QyX,
Might you be a candidate for intrathecal morphine with an implanted pump?

While kratom generally is not as potent as strong opiods, it is also chemically distinct and it might help your symptoms even though it would not replace strong opioids. The downside of trying it is low, so might be worth adding onto what you are taking. For most of us using kratom helps with the jumpy legs, less helpful for sleep. It also treats pain.

For marijuana, most of us using it find that the fancy combinations (high CBD, etc.) don't work for the sleeplessness of RLS. I just buy marijuana Brownies (no strain information on the package) and take 10-15mg THC 2 hours before bed and another 5 mg in the middle of the night. Inhaled works fast but wears off fast as well. I tried at least a dozen strains of so-called sleep inducing strains and none were as good as what I am using now.
Blessings,
Holland

QyX
Posts: 316
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Fighting opioid tolerance

Postby QyX » Mon Feb 20, 2017 4:15 am

stjohnh wrote:QyX,
Might you be a candidate for intrathecal morphine with an implanted pump?

While kratom generally is not as potent as strong opiods, it is also chemically distinct and it might help your symptoms even though it would not replace strong opioids. The downside of trying it is low, so might be worth adding onto what you are taking. For most of us using kratom helps with the jumpy legs, less helpful for sleep. It also treats pain.

For marijuana, most of us using it find that the fancy combinations (high CBD, etc.) don't work for the sleeplessness of RLS. I just buy marijuana Brownies (no strain information on the package) and take 10-15mg THC 2 hours before bed and another 5 mg in the middle of the night. Inhaled works fast but wears off fast as well. I tried at least a dozen strains of so-called sleep inducing strains and none were as good as what I am using now.


Please no intrathecal morphine and an implanted pump. I am just 32 years young. I consider myself way to young for this kind of therapy.

Kratom is something I might try. I just never saw any reason to do so because I have access to potent opioids.

At the moment and in the near future I won't be possible to buy cookies. The only thing I can get is a prescription for marijuana and of course there will be strains with high THC but no Brownies. So I would need to make them on my own.

Right now I am exploring options. Low dose Methylphenidat is still helping a lot but the stimulating effect contradicts sleeplessness and some symptoms I have may be methylphenidat withdraw symptoms, pretty much the same when you've taken DAs for a long time and then stop taking them. Right now I can't determine how big the influence of this is. I am trying to stop taking it at all and look at my baseline only with opioids and Carbamazepine. I have some hope that it will be better then at the moment.

Right at the moment I have messed up legs in the night and only low dose Methylphenidate is helping. That's why it's kinda hard to stop it.

At least I was able to reduce my opioid intake a bit.

Will see how it goes from there.

Always this switching and cycling between the drugs. This seems to be part of the disorder just like the RLS symptoms in general.

Noreserve
Posts: 41
Joined: Mon Nov 14, 2016 3:42 am

Re: Fighting opioid tolerance

Postby Noreserve » Mon Feb 20, 2017 7:55 am

Hi QyX we conversed before. I am the one who suggested giving up the melatonin and going over to the "dark" side...meaning "non-prescription" treatments like iron infusions or just plain iron supplements like ferrous bisglycinate, which is highly bioavailable. Even though people with RLS may have normal, even robust iron stores, our brains are "anemic" and our dopamine receptors pretty bad - possibly genetically so and due to that lack of brain iron. So maybe the medical community has it all wrong, rather than giving us dopamine agonists and the like at night they should give us dopamine antagonists by day :). Melatonin is a dopamine antagonist (just don't take at night) so is fasting. Supposedly so is forskolin, inositol, cysteine and possibly taurine. In other words, do you think it might be time to stop down-regulating our already down-regulated receptors and start to build them up? Because of faulty brain iron management (just google that term and Johns Hopkins for more info) we would probably have to make building up our receptors a way of life, the way bodybuilders do their biceps. So what? Could be fun? Instead of finding that perfect combo of prescription drugs what if we all try to find that perfect diet, exercise, supplements and iron (that crosses the BBB) that keeps our dopamine transport system humming along even in the dead of night. I buy the ferrous bisglycinate from Amazon for $6 in 25mg tablets. There is also something called "Patchmd Iron Plus" that is a patch with 45mg of ferrous bisglycinate. I highly recommend either. If you had a patient who was anemic would you give them iron or painkillers? Xx

Noreserve
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Joined: Mon Nov 14, 2016 3:42 am

Re: Fighting opioid tolerance

Postby Noreserve » Mon Feb 20, 2017 8:19 am


QyX
Posts: 316
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Fighting opioid tolerance

Postby QyX » Mon Feb 20, 2017 5:47 pm

So giving up Melatonin was good advice. I remembered that when RLS symptoms were coming back at night. Stopping Melatonin solved the problem.

I do have a lots of experience with taking Dopamine ANTAgonists and because I was unable to tolerate them at night at some point I basically ended up taking them in early morning to find some sleep. The problem with available prescription Dopamine Antagonists is that most of them also have a antihistaminergic effect and various serotonin ago-/antagonistic properities.

Only the high potent Dopamine Antagonists like Haloperidol only work as pure Dopamine Antagonists. This are old classic drugs like Haloperidol. I do have experience with this drug and what I can tell you is that they totally mess up your legs and over long term your mood, cognition & energy, even in very low doses.

BUT in general your idea sounds interesting but unfortunately the whole mechanism isn't as simple as you described. The big big problem is that you don't know what happens in the end. Intervening at one point causes a cascade of changes and you don't know what you will end up with.

Melatonin worked fine for me for over a year, Methylphenidat worked for many more years and right now I can't stop it because my legs feal totally messed up without it.

And with iron: aren't their studies who showed that not every patient improves when given iron infusions?

And yes, it is not unlikely that a specific diet or exercises might improve symptoms. For sure moving the legs and avoiding caffeine helps.

I just wish that their would be more research and less focus on expensive medication. Right now we know which drugs are possibly working.

Noreserve
Posts: 41
Joined: Mon Nov 14, 2016 3:42 am

Re: Fighting opioid tolerance

Postby Noreserve » Mon Feb 20, 2017 6:24 pm

Yes, you are so very right about the antagonists. The prescription antagonists like the anti-psychotics are out, no question there. And even the allegedly natural ones can be sedating and for substances like melatonin it goes against mother nature to introduce during the day. Well I've gone on certain website where people are looking for a "better high" from whatever drug of addiction (including *****) they are taking and they too are looking for natural ways to up-regulate their receptors. Calorie restriction, fasting, and something called the uridine stack which includes uridine 5 monophosphate, CDP choline and some type of fish oil come up often. Most on here need immediate relief or at the very least an emergency med. I truly believe that emergency med would be ferrous bisglycinate (either pill or patch) taken on an empty stomach (for better absorption) an hour before bed. I'm on another forum and everyone who has tried it has gotten complete or near complete relief, except, and there's always an except, people with diseases like MS or ME. They get some relief but not complete. These people might do better with the iron infusions. Also, people who are taking clinical doses of antidepressants do not seem to get complete relief. When I was unwittingly taking 1mg of melatonin (and that's when I first read about the iron on the internet) one 25mg tablet provided complete relief. When I upped the melatonin to 2mg I had to take two capsules of the ferrous bisglycinate. So people on clinical doses of antidepressants might need more and you really shouldn't take more than 2 tablets of the oral iron.

Iron infusions I believe are a work in progress. Researchers have admitted that certain iron formulas work better than others yet offer no explanation. Once the iron is in the bloodstream why should formula matter? I'm being facetious here kind of because I don't understand why they aren't using a form of iron that stands the best chance of crossing the blood brain barrier. I think the researchers are still too focused on getting patients' iron stores up to some magical number which I truly believe does not exist. What's the magic number - 177, 234, 300? Nah, that doesn't make sense. We're talking about a condition that for the most part rears its ugly head at night and that is relieved when we stand up and walk. It's the mouse that roared. And for a lot of us for a good portion of our lives that mouse is pretty quiet. As we age, or injure our spines, or gain weight, or get pregnant, or go on statins (among many other substances), or down-regulate our receptors with the DAs then the quiet mouse roars. And I guess we who are pre-disposed to RLS will always be on the edge and the slightest wrong move means we go off the edge into the abyss. I just want to stay on the edge or even pull myself back a little.

Rustsmith
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Re: Fighting opioid tolerance

Postby Rustsmith » Mon Feb 20, 2017 9:29 pm

Noreserve, there is some work being done on the edges of the idea of iron transport across the blood brain barrier, but it is not yet anywhere near the point of addressing development of a treatment. I should also explain that I am one of the group for whom IV iron treatments are out. My serum ferritin level is 365, yet my RLS is not always under control. I also have several of the genes that have been identified to have some sort of relationship with RLS. The current theories is that one of these genes (MEIS1) may play a role in the synthesis of a protein that is responsible for transport of metal ions, such as iron, across the blood brain barrier. It therefore stands to reason that if that protein doesn't function as it should, those of us that have it may not be able to efficiently transport iron into all of the portions of the brain where it is needed.

Of course, the amount of research that is necessary to get from where we are now to your wish of a way to SAFELY improve iron transport could require decades of work. More needs to be know about the function of MEIS1 and the metal transport protein it is thought to help produce. Then a way to either repair our copy of MEIS1 or develop a way to introduce the proper protein would be needed. And of course, all this would have to be done without introducing much more serious complications. The genetic research is currently underway, but I don't expect to live long enough to see any benefit.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Noreserve
Posts: 41
Joined: Mon Nov 14, 2016 3:42 am

Re: Fighting opioid tolerance

Postby Noreserve » Mon Feb 20, 2017 10:45 pm

Steve, that's high. Do you have a lot of inflammation or another chronic disease? You should google "high ferritin in the face of low iron" or something like that. I have heard of people who have just that, high ferritin but low iron. Not sure if that is you but thought I would throw that out there just in case.

I for one am not waiting for decades of research. No reason to. The ferrous bisglycinate in pill or patch form, taken at night, WORKS. Plus, why should the vast majority of RLS sufferers have no symptoms of RLS by day, just night? What, our iron transport system shuts off at night? Nah, I don't think so. Or could it be that iron availability (in the blood) drops at night? Picture this, by day there is just enough unbound iron in our blood to keep our lousy dopamine receptors humming along. Then comes night and our available iron drops. The non-RLS world has iron reserves right there in their brains, we do not. The non-RLS world can make a withdrawal, we can't. We get RLS...at night. Hopefully there is research going on to figure out a way for us to store iron in our brains like the rest of the world. I will look for the article that backs this up.

Noreserve
Posts: 41
Joined: Mon Nov 14, 2016 3:42 am

Re: Fighting opioid tolerance

Postby Noreserve » Mon Feb 20, 2017 10:47 pm

Here's one, I'll fetch the other one:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3977075/

Noreserve
Posts: 41
Joined: Mon Nov 14, 2016 3:42 am

Re: Fighting opioid tolerance

Postby Noreserve » Mon Feb 20, 2017 10:52 pm

Here's a case study of a woman with RLS, normal ferritin, yet iron deficiency:
http://www.aasmnet.org/jcsm/ViewAbstract.aspx?pid=28953


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