Oxy dosage not working

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Brynmr
Posts: 179
Joined: Sat Jul 21, 2018 3:15 pm

Oxy dosage not working

Post by Brynmr »

I take 20 mg of oxycodone daily (along with 3,000mg Gabapentin) but lately I'm experiencing mild symptoms several hours before my 8:00pm dose and my 1:00 dose - what I call pre-symptoms, the ones you get when you know the bad ones are coming. I contacted my GP and requested an increase in dosage so I'm going to see him this afternoon. Is it possible I'm experiencing a craving for oxy and not an increase in RLS symptoms? It feels like RLS symptoms - unease, leg movement - but I don't know for sure. I've been taking oxy for RLS for about 20 months in only the last 6 weeks or so have I had this problem.
Rustsmith
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Re: Oxy dosage not working

Post by Rustsmith »

The half life of oxy is about 3 hrs, so by taking it at 1P and then at 8P, you only have 25% of the 1P dose still in your system shortly before 8P (50% of 50% is 25%). Therefore, it seems to me that it is more likely that you are seeing a slight increase in the dose that you need to control your RLS. If it was a craving for the drug, your symptoms would be different and probably be more like those of withdrawal, which feel more like the flu than a mild case of RLS.
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.
Brynmr
Posts: 179
Joined: Sat Jul 21, 2018 3:15 pm

Re: Oxy dosage not working

Post by Brynmr »

Rustsmith wrote: Tue Sep 24, 2024 6:02 pm The half life of oxy is about 3 hrs, so by taking it at 1P and then at 8P, you only have 25% of the 1P dose still in your system shortly before 8P (50% of 50% is 25%). Therefore, it seems to me that it is more likely that you are seeing a slight increase in the dose that you need to control your RLS. If it was a craving for the drug, your symptoms would be different and probably be more like those of withdrawal, which feel more like the flu than a mild case of RLS.

Thanks Steve and sorry, I kinda messed up my explanation. I take 5mg @ 11:00 am, 5mg @ 3:30 pm, 5mg @ 8:30 pm and 5mg @ 1:00am (all times approx). My symptoms are definitely not flu like. I get the leg movements and the definition of unease best describes it - a feeling of discomfort and restlessness in my body and mind.
Rustsmith
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Re: Oxy dosage not working

Post by Rustsmith »

I take 5mg @ 11:00 am, 5mg @ 3:30 pm, 5mg @ 8:30 pm and 5mg @ 1:00am (all times approx). My symptoms are definitely not flu like.
The recommended dose range for oxy in the Management of RLS document is 10-30mg/day, so that puts you right in the middle.

Assuming that you are taking oxycodone, that you could do is ask to switch to oxycontin, which is the extended release form of oxy. Oxycontin's half life is about twice as long, so if your problem is that you are running out of effective oxy in between doses, that would extend the time that it is effective.
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.
Brynmr
Posts: 179
Joined: Sat Jul 21, 2018 3:15 pm

Re: Oxy dosage not working

Post by Brynmr »

Rustsmith wrote: Tue Sep 24, 2024 7:05 pm
I take 5mg @ 11:00 am, 5mg @ 3:30 pm, 5mg @ 8:30 pm and 5mg @ 1:00am (all times approx). My symptoms are definitely not flu like.
The recommended dose range for oxy in the Management of RLS document is 10-30mg/day, so that puts you right in the middle.

Assuming that you are taking oxycodone, that you could do is ask to switch to oxycontin, which is the extended release form of oxy. Oxycontin's half life is about twice as long, so if your problem is that you are running out of effective oxy in between doses, that would extend the time that it is effective.

I'll put that to my GP who I just saw this afternoon. He wants me to try 10mg of oxycodone 4 times a day. At first he was going to prescribe 7.5mg 4 times a day (30mg a day) but then realized oxycodone doesn't come in 7.5 so the bumped it up to 10mg (40mg a day). He asked me to keep him informed as to how that works for one month. I may try to reduce that to 30mg a day for the first week and see how that works.
Trophyman
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Joined: Sun Jun 25, 2023 4:59 pm
Location: Southern California

Re: Oxy dosage not working

Post by Trophyman »

Hi Brynmr - Your current situation is nearly identical to mine except that I only need to take the Oxycodone at night. I start with 5mg around 10:30 - 11pm then I find that I start sensing symptoms around 1:30am. I've been cutting my 5mg tablet in half then taking 2.5mg to get it under control. This used to get me through the night but I find that I have to take half of the remaining 2.5mg around 5am to get me through until I get up around 7am. Then I often feel groggy when I get up.

Regarding the unease that you feel...your description is accurate. My RLS used to be limited to my legs, then about a year ago it has moved into the trunk of by body (almost like an acid reflux feeling in the middle of my chest, then radiating pulsations going to my arms. I also get this almost drunk feeling in my head when this is going on. Not sure that is causing that but it has me concerned.

Last night, rather than taking 2.5 of the 5mg tablet, I took the whole thing (so 5mg) and it seemed to get me through until 6:30 am...the issue is that I would have loved to sleep in but the sensations are so unbearable I just get up. I am afraid to increase my dose beyond a total of 10mg per day for a variety of reasons such as...I don't want to become dependent upon a larger dose. I am 57 and would hate to be taking 30mg in my later years. Also, I am concerned that it may raise flags to get more of a supply.

I have been going to RLS clinic at Scripps in San Diego. They have been helpful but I find that my knowledge of treatment options is at the same level of theirs.

I sometime get frightened about the future. I sometimes feel that I can't live like this the rest of my life but I keep hoping for a cure. My biggest fear is being in a situation like my mom who was non-verbal at the end of her life...I can't imagine laying in bed with these symptoms and not being able to communicate to my caregivers as to what I am experiencing and the need for the medication.

Sorry for the long post but its hard to communicate this to others that don't have RLS.
Polar Bear
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Re: Oxy dosage not working

Post by Polar Bear »

""My biggest fear is being in a situation like my mom who was non-verbal at the end of her life...I can't imagine laying in bed with these symptoms and not being able to communicate to my caregivers as to what I am experiencing and the need for the medication.""

Throphyman - your comment as I've quoted above, I could have written word for word. It is a fear that I also have and every so often raises it's ugly head.
Betty
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
beckycolorado
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Re: Oxy dosage not working

Post by beckycolorado »

Trophyman, I also have worries about the future. I’m a healthy 60 year old and don’t know how RLS will progress. But I was talking to a friend I made from this site and she said how lucky we are that there is a medicine (opioid) that greatly reduces our pain and suffering. Think of our parents and grandparents who may have had RLS and they just had to suffer. I think about this when I get down. Hope it helps
Rustsmith
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Re: Oxy dosage not working

Post by Rustsmith »

Trophyman, there is actually a clinical trial that I believe is still on-going at Univ of Texas-Austin where they are studying RLS in seniors in memory care units. For years, the staff in these units has referred to a portion of patient population as "Sundowners" because the start getting agitated after dinner and through the evening. Anyone with RLS would recognize this a a likely case of RLS in someone who cannot communicate. In the study, they started administering low doses of a dopamine agonist as well as they monitored iron levels. Not surprisingly, many of the Sundowner patients calmed down and started acting like the rest of the patients. Once the study is complete and has been published, hopefully it will change how both nursing homes as well as gerontologists start treating both Sundowners and those of us with confirmed cases of RLS.
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.
Trophyman
Posts: 15
Joined: Sun Jun 25, 2023 4:59 pm
Location: Southern California

Re: Oxy dosage not working

Post by Trophyman »

Yes - I have wondered other other generations dealt with this awful condition. Can't imagine not having anything to deal with the symptoms.
One time when I was taking the Oxy in the middle of the night, the pill didn't go down all the way because I did't drink enough water (I did't want to have to pee later...LOL)...then I ended up having a raspy voice the next day. I now crush it with my teeth and take with a few spoonfuls of low fat cottage cheese to chase it down and a sip of water...this seems to ensure that it doesn't get stuck in the middle somewhere.
I had my Iron and Ferritin levels checked earlier in the year and found that they were very low. I had 3 Iron infusions and now my level is up above 200. I was hoping that I may be one of the few individuals where this would magically make it go away...but unfortunately I was not one of them. :-(
This board has been a tremendous source of support for me. It's nice to be able to communicate with others who this condition.
Brynmr
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Joined: Sat Jul 21, 2018 3:15 pm

Re: Oxy dosage not working

Post by Brynmr »

Well, I got hit by hurricane Helene. Our power went out on the 27th (Friday). My prescription for oxy was to be filled on the 30th (Monday). The pharmacies were all closed. Thinking the power would be back on in a few hours, I took Friday's 20mg of oxy. That left me 8 - 5mg pills. Saturday it looked like the pharmacies would be out for days so I cut back to 2 pills a day. Monday, with 4 pills left, I cut back to one pill a day. Fortunately, the pharmacies opened on Tuesday and I got my prescription filled. It was very difficult. I suffered all weekend and Monday was the worse butI got through it.
Polar Bear
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Re: Oxy dosage not working

Post by Polar Bear »

Brynmr. I'm sorry Hurricane Helene caused an issue for you and can imagine how difficult those few days must have been.
It is one reason why, where possible, I try to have a 'stash' of certain medications. The ones that would cause me distress if there was ever a hiccup getting my renewal, a little breathing space.
Glad to hear you are back on track.
Betty
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
Rustsmith
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Re: Oxy dosage not working

Post by Rustsmith »

Glad you were able to finally get your prescription refilled before completely running out.

I have had several rather contentious discussions with my pharmacist about their 30 day refill rules and how patients are supposed to manage in emergencies. When all is said and done, it comes down to the fact that you have to plan ahead. Polar Bear's comment about building a stash is important. Knowing that you were running low and had a refill pending, you might have been able to get the pharmacy to provide you with a few extra pills last week to cover the time that they knew that they would be closed. A pharmacist that cares about their customers will usually be willing to bend the rules a bit and provide you with a couple of early pills. Unfortunately, there are also those individuals who don't care. When I ask that type of person would they treat a diabetic or heart patient on blood thinner the same way, they nod and say "Go to the emergency room" because they simply don't care.
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.
Brynmr
Posts: 179
Joined: Sat Jul 21, 2018 3:15 pm

Re: Oxy dosage not working

Post by Brynmr »

Thanks guys - lesson learned. Because of Doc's increase in oxy dosage (40mg a day) I've already set aside 45mg and plan on more before the end of the month. I actually only needed 30mg a day. Steve: CVS is ruthless. Policy policy policy. There's no way they would bend the rules. I wouldn't even ask. The benefit of going 3 days on minimal dosage is I know what to expect now and I know I can do it - short term anyway.
ViewsAskew
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Re: Oxy dosage not working

Post by ViewsAskew »

Brynmr wrote: Sat Oct 05, 2024 5:59 pm Well, I got hit by hurricane Helene. Our power went out on the 27th (Friday). My prescription for oxy was to be filled on the 30th (Monday). The pharmacies were all closed. Thinking the power would be back on in a few hours, I took Friday's 20mg of oxy. That left me 8 - 5mg pills. Saturday it looked like the pharmacies would be out for days so I cut back to 2 pills a day. Monday, with 4 pills left, I cut back to one pill a day. Fortunately, the pharmacies opened on Tuesday and I got my prescription filled. It was very difficult. I suffered all weekend and Monday was the worse butI got through it.
When I first saw the word Helene, I was thinking much worse. I am not downplaying suffering symptoms! Just very glad you are safe and that now you do have your prescription.
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.
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