a new drug experiment

[Marlayna67]

hello all,

a quick catch up is that oxycodone used to work for me. I switched to Suboxone and then started having joint pain and more recently crazy insomnia. I would fall asleep for exactly 1 hour and then be awake for four hours. It has been wreaking havoc on my daytime life, naturally. No RLS but terrible sleep.

Dr. B has suggested I give methadone a try and see if it will stop the RLS and allow me to sleep. it seems our goal is next weigh whether oxy, Suboxone or methadone works best and then pick one.

so far, no doctors have been able to determine why I have such terrible joint pain. I just saw a new one today and still no answers. I’m just assuming it’s got to be the drugs.

I’m wondering about others who can share experiences with methadone good or bad.

[Joolsg]

As this is a UK website, there aren't many UK patients on methadone.We do have many US members though, and quite a few are taking methadone.

Put methadone in the search box, and , hopefully it will show those taking it.

[Marlayna67 in reply to Joolsg]

Thank you !

[LotteM in reply to Joolsg]

Or get in touch with John Winkelman from the opioid registry. He has been following RLS patients on opioids for 4? years now. And the questionnaires always include at least a page about side effects. He may know whether one of the 500 in the survey has ever experienced it. Definitely not a common side effect.

[Marlayna67 in reply to LotteM]

Thank you! Even Dr. B. said this is unusual.

[LotteM in reply to Marlayna67]

The joint pain can have emerged independently of the methadone. Have you / your doctor considered other causes? It can be over-exertion or age-related wear and tear (osteoarthritis)? Or an injury. I am not a medical doctor, but joint pain is not uncommon in the general population.

[Marlayna67 in reply to LotteM]

That's what we're checking out. I do have an elevated marker for inflammation, but only one. The insomnia came out of the blue after suboxone was so good and I can't function with insomnia of that nature. The oxy has a decreased effect now but Dr. B. said that couldn't be possible. One thing the new doc mentioned yesterday is that I could be super tensing during sleep (but knocked out with drugs) and that could be causing all the pain. It's so bad, I will not sit up in bed to take a drink of water. I lay there until I have to get up, and then I take my time rolling one joint at a time. This is insane. I'm just going to keep trying until I find the magic...

[LotteM in reply to Marlayna67]

It sounds dire. I hope you get some answers soon. And above all get better soon.

[Marlayna67 in reply to LotteM]

I am hopeful! Just kind of strange that after living a good, clean life I end up dealing with this and needing medication.

[Mongolia2020]

hi Marlayna, I am on methadone. Started in February this year so been on it 4 1/2 months. Side effects included severe constipation, hot & cold, nausea, sweating, loss of appetite annd daytime sleepiness are the main ones. My body has gradually got used to the methadone and I have titrated slowly up to 8.75 mg. I probably will stop at 10 mg. I found the symptoms manageable as long as i went up very slowly - it took me about 2 weeks to get used to each increase in dose, and with each increase of 2.5 mg or 1.25 mg ( 1/2 or 1:4 of a pill), I had a corresponding improvement in my sleep. The only symptoms bothering me now are constipation ( probably permanent but I am managing with diet and laxatives) and I am still sleepy during the day ( especially immediately after eating), but that is getting less bothersome also.

I hope that helps. Best wishes.

[Marlayna67 in reply to Mongolia2020]

Thank you, very helpful. I’m already used to the constipation and MiraLAX has been my best friend for a while. Side effects do not sound pleasant and I did not deal with those on Suboxone. UGG.

[LanaCSR]

Have you consulted a rheumatologist?

[Marlayna67 in reply to LanaCSR]

That will be one of the next steps. When I get the lab work back, we should know if that’s necessary. I definitely have some misshapen finger bone joints already so that was OK until the more serious joint pain set in.

[Jerry57]

Are you taking a statin? Statins can give you joint pain. This was several years ago, I took a statin for a year or so and developed terrible joint pain, and eventually discovered it was the statin causing it. Walked 2 miles a day for many years, but my knees got so bad that I had to quit. A few weeks after stopping the statin, my wife and I were back to walking every morning. Hope you find the problem.

[Marlayna67 in reply to Jerry57]

What! I do take statins for high cholesterol. I went off for six months because I thought I could manage it without them and my number is immediately shot up which scared me. I’m back on them. Thank you so much for giving me another angle to consider. And I’m glad you are feeling better. Unfortunately, I have to stay on them, but would be nice to know the reason.

[SueJohnson in reply to Marlayna67]

Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS. And then there are Triglide (Fenofibrate, Fibricor, Lipantil, Lipofen, Supralip) and Bezafibrate (Bezalip) which are not statins which seem safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.

[Marlayna67 in reply to SueJohnson]

This is super helpful. Thanks! I’ve tried vegan and it’s not for me but good for your husband, that’s excellent!

[David7 in reply to Marlayna67]

There are different Statins that lower cholesterol. Please ask your doctor to switch you to another one. I had terrible joint and muscle pains on one Statin- Astrovasten and when switched to Rsuvostatin the pains stopped and the Cholesterol is in check. It's a simple switch that can be very beneficial. ASK about switching to a different Statin.

All the Best,

David7

[Marlayna67 in reply to David7]

great idea. Unfortunately I am already taking rosuvastatin, but I’m on the lowest dose. I wish I didn’t have to take the darn thing at all. But as soon as I stop, my cholesterol shoots up over 300. I will do my research. Glad you are feeling better!

[JojoWalker]

you might also get tested for polymyalgia. Stress can trigger it, and severe joint pain is how it manifests itself

[Marlayna67 in reply to JojoWalker]

Did take all the tests for it and all were negative except for CRP. It’s just the most confounding thing.

[AccountingIsSexy]

You can have polymyalgia and have low indicators. It's an awful condition. One way to see if it is PMR is to take a few days of Prednisone - like at least 20 mg. If the pain does not reduce appreciably, it is probably not PMR. It's great to have the pain gone, but the side effects of Prednisone are awful as well. Best of luck.

[Marlayna67 in reply to AccountingIsSexy]

Thank you. I will keep this in mind. I am definitely feeling “poly” rather than here and there

[JunieBJones]

While withdrawing from ropinirole, I was on methadone. I did not get very much pain relief from it and it caused terrible insomnia. No sleep at night and then forced to sleep some during the day even though it jeopordized my night time sleep. My neurologist wouldn't change the medication, I would have prefered to use oxycodone as I had a good experience with it previously. Now I'm off the ropinirole and am weaning off the methadone (through a pain clinic) and will be on oxycodone for life for chronic pain and the pain of restless legs. Not everyone responds to medications in the same way. I'm unable to use meds like aspirin and ibuprofen due to some kidney failure. I would certainly supplement an opioid with these if I could as I also have joint aching. Having a provider willing to work with you is so important. I hope you find some answers.

[Marlayna67 in reply to JunieBJones]

Thank you for this information. I love your name! Reminds me of when my children were little. Crazy to hear that the methadone caused insomnia, which is why I would be moving away from the Suboxone. I am definitely having a lot of side effects from the oxy now, including breakthrough RLS during the day and nausea and more. I’m just freaking exhausted. After reading your post, I may not fill the methadone Prescription. I may just go back to Suboxone because I know it works. Figure out a way to deal with that insomnia. Big sigh.

[JunieBJones in reply to Marlayna67]

Hi Marlayna, Yes I read those stories of Junie B Jones to my granddaughters, it ready stuck in my head and I actually named my Jack Russell the same name! I've read through the replies you've received and you have really received some excellent information. I saw the ones regarding statins. I am on the same as you're on, I switched to that from another due to joint aches, I was on pravastatin. It's worth a consideration to change and I reiterate, everyone responds differently. I have received a work up for joint inflammation and have seen a rheumatologist. I had a slight elevation in one lab, but it normalized. I sometimes think that there are subclinical lab results for joint pain but drs aren't willing to pursue anything when they see normals. I agree so much with your statement about leading a good life and now this! So true. The ropinirole was like it was sent from heaven for several years, I discovered the augmentation myself. I'd seen many fine providers over the years, but none picked up on the high dose of ropinirole that over time others had increased. Thankfully, a PA I'm seeing now was open to pursuing this avenue of augmentation and I was referred to a neurologist who was well thought of, I guess. He started my weaning off of the ropinirole, but didn't care enough about the pain I was hardly enduring. He wanted me to go off over 10 weeks, but it took from August until January for me to get off of it, this is the normal. He was going to take me off the methadone without considering I was still going to have RLS pain. I connected with a pain clinic and that's how I'm coming off the methadone, nearly off and going on oxycodone. This has all been so hard, but the pain clinic, is what they are but also very stoic about their plan when weaning. So I ask, "Why all this when I've led a good life, a life of caring for others." I hope you find your answers and get relief. I'm going to try to follow your post. Have you checked out the RLS Foundation? Webinars on YouTube by Drs. Winkelmann and Berkowski?

[Marlayna67 in reply to JunieBJones]

Thank you so much for your story. I’m very happy to hear that you found the right providers to help you. You sound a lot like me with only having one high marker for example. I’m suffering at the moment from Oxy which has stopped working and it was a godsend for years. I’ll go back to Suboxone because I’d rather not sleep and deal with this creeping RLS coming back! So glad oxy works well for you as it comes in handy as a painkiller as well. The Suboxone does not work as well, even though it’s supposed to. For some reason, it just doesn’t work on me for pain.

[Bantamdyno]

Hi, I get shorten muscle which pulls on the joints causing pain, the shotend muscle is usually caused by pain points🤔🤔and my rls🤔

[Marlayna67 in reply to Bantamdyno]

My client has that condition too. He does special stretches. Does that help you?