Meds Help. NEED info and insight. PLEASE

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.
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RickyS29061
Posts: 4
Joined: Tue Apr 28, 2020 4:03 am

Meds Help. NEED info and insight. PLEASE

Post by RickyS29061 »

Ok so I have very severe RLS it doesn't only happen at night for me it happens all hours of the day and night. I have such bad rls symptoms and severe pain from it to the point I think of cutting my legs off it brings me to tears and I have a pretty high pain tolerance. And I can take my meds for it at bed usually around 10pm and it stops the rls for a few hours usually around 2-3 am I am awaken from it and have to take another pill then I wake up at 6 am get my kids ready for school and then by 7 I have to take another pill because the rls is back full blown again. The symptoms usually go away for a few hours but around noon and 1 pm my rls is back again. Its almost as soon or shortly after the medication wares off the rls symptoms is just waiting to attack me. And lately I've noticed my meds have been less effective as in not lasting as long as they used to in keeping the symptoms at bay.. im trying to figure out if anyone has had this issue and what helped so me and my dr can talk ideas. I've tried all the non opioid meds for rls with some working for a lil bit but then getting argumentation from hell. I've tried methadone 10mg but it made me extremely constipated. Currently I have been on oxycodone 20mg 4 times daily for about 8 months now before that I was on it 3 times daily but they just stopped working as good so my dr changed it to 4 times a day. And now I'm back at the same problem where they just are not working as good for as long. I used to get around 4-5 hours of relief with one pill and now I'm getting around 3 hours of relief before my rls symptoms come back.. So I'm not sure if maybe seeing if my DR can go up to the 30mg oxycodone or if there is another medication that might be better and longer lasting. I've already tried Oxycontin and it seemed to only last as long as the oxycodone did at first the 4-5 hours.. The oxycodone doesn't cause me any drowsiness so thats a plus when having to take it during the day. So I guess my question is would it be better to change my dosage to a higher MG per pill or change it to me taking 5 pills a day instead of 4 to adjust for the amount of time it last? Or is there another medication that last longer I know my dr has talked about dilaudid but I'm not sure how long they usually last for. I haven't been on any morphine for it because I've had morphine in the past and it just made me.really tired all the time and I wasn't able to.function during the day.. currently taking the oxycodone I haven't had any negative side effects no breathing issues, no sleep issues, no discomfort in any kinda way, and I'm still able to.function normally daily and it does stop the symptoms completely for a few hours.. So please if anyone has suggestions on a medication I should try or if my dosage should go up amount or strength please any info would be amazing. And yes all my lvls are where they should be I've have blood test, an ekg and pretty much any kinda test done for rls I have even tried the electrical leg shocking things in a clinical trial. Again thanks for any info you can offer.

Rustsmith
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Re: Meds Help. NEED info and insight. PLEASE

Post by Rustsmith »

My guess is that what you are experiencing is the half life of oxy, which is 4-6 hrs. You meds are simply giving our at that point, so increasing the dose will only help a little bit. For example, instead of lasting 4-6 hrs, they might last 5-7.

There are two long lasting opioids, methadone and tramadol ER. You might ask you doctor to let you try tramadol ER (the ER is the long lasting from of plain tramadol). Tramadol is the only non-dopamine agonist that can cause augmentation, but this is a very rare situation. Tramadol is not as strong as most of the other opioids, which is part of the reason why it is Sch IV instead of Sch II. This makes prescriptions a bit easier to manage as the 30 day limit does not apply to Sch IV meds. The other word of warning about tramadol is that if you take it for a few months and then decide to stop, it is extremely important that you slowly taper. This is because it is also an anti-depressant and simply switching back to oxy doesn't help with the withdrawal from the anti-depressant side of tramadol.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.

ViewsAskew
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Location: Los Angeles

Re: Meds Help. NEED info and insight. PLEASE

Post by ViewsAskew »

I have also found that the constipation from opioids can be managed with multiple things. I take 17.5 mg methadone right now (goes up and down depending on my iron level*). How much can you increase your veggies, dried plums, beans and/or oatmeal? About few dried plums and other associated high fiber items helps a lot. I can definitely tell when I stop eating them.

I've also found that some types of magnesium help a LOT. There is one that I used to buy that was all I needed. This product worked excellently (I tried many types, none worked as well as this). https://www.swansonvitamins.com/swanson ... mg-30-caps

Exercise also very helpful, primarily walking.

* My serum ferritin MUST be over 200 to get ANY reduction in symptoms, and at least 300 to get a 50% reduction. It takes weeks for an infusion to reach the brain, if at all. I can get 1000 mg of iron as an infusion and my ferritin is below 100 in 6-8 months. Measured just 10-12 weeks after, it's usually only about 250 - and I've never had it help much unless it was at least 280. By 6 months after, it is usually only around 200 and under 100 within a year. So, knowing exactly what the levels are is very important and unless it's really high, it possibly COULD help to improve it.
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.

badnights
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Re: Meds Help. NEED info and insight. PLEASE

Post by badnights »

There are other long-lasting opioids. One is hydromorph contin (the long-acting version of Dilaudid/hydromorphone). I've been taking it for years with no extreme side effects.

Others, besides the Tramadol ER and methodone that Steve mentioned and the sustained-release oxycodone you're already aware of, are buprenorphine, controlled-release morphine, and extended-release oxymorphone. (Buprenorphine is one of the ingredients of Suboxone.)

" How much can you increase your veggies, dried plums, beans and/or oatmeal? About few dried plums and other associated high fiber items helps a lot. " This is very true. I became painfully constipated the first time I used an opioid. I now control that entirely with diet. Many cups a day of vegetables.
Beth - Wishing you a restful sleep tonight
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Dr.Placebo
Posts: 65
Joined: Thu Aug 25, 2022 7:03 pm
Location: Stow, Massachusetts

Re: Meds Help. NEED info and insight. PLEASE

Post by Dr.Placebo »

Ricky, that sounds awful. Just to clarify--have you had IV iron infusions and are your ferritin levels above 100?
Paul

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