Prescription Refills

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.
Yankiwi
Posts: 345
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: Prescription Refills

Postby Yankiwi » Sat Apr 21, 2018 4:56 am

Yeah, those hot flash cures never worked for the user. I was lucky to be in the era before hormones were thought to be so bad. I couldn't have got through those years without them. And $32.90 is about my limit for potential quackery.

2BassetMom
Posts: 150
Joined: Mon Mar 30, 2015 7:06 am
Location: Idaho

Re: Prescription Refills

Postby 2BassetMom » Thu Apr 26, 2018 12:07 pm

My PA prescribed OxyContin CR 15mg, I tablet at bedtime. The first night I took it I didn't fall asleep until after 1:00am and that was after dealing with restless legs off and on during the evening. I woke several times with rls finally rising at 5:30 to get ready to go to my regular Tues/Wed Bible Study Fellowship. I lead a group of 10 women and need to be alert. It was scary, I had to be sure I was reading the correct word in asking the questions on my paper etc. The zoned out effect lasted into the early afternoon when I was attacked by rls! Pain and rls was pretty bad so I took my very last dose of oxycodone 7.5/3.25. I got relief from that but then had another bad episode riding home with my daughter around 6pm. This is not unusual as it is an hour drive. I took the bedtime dose earlier and managed to fall asleep around 10 and now am awake at 4:00 am. My sleep doctor at Scripps wrote in his notes that I should get the OxyContin CR at night and have a daytime oxycodone available. My PA has his notes. I'm going to message her but not quite sure how to word the message so as not to seem overly needy, which I am! I did start back on the Requip/Ropinirole 1/2 tablet and the anxiety stayed away and it has given me a little relief. This is such a roller coaster ride, dealing with doctors, meds, and our symptoms.

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: Prescription Refills

Postby Joanie60 » Thu Apr 26, 2018 1:53 pm

Oh man I feel your pain!! I think our doctors figure out pretty quickly who is drug seeking and who is not! I’ve yet to meet or hear of an RLS sufferer who is drug seeking. When opiates are your last line of defense against this horrid disease, last thing I’m going to do is lose the trust of my doc. So I hope you call the PA and ask for quick action oxycodone per doc’s notes!

2BassetMom
Posts: 150
Joined: Mon Mar 30, 2015 7:06 am
Location: Idaho

Re: Prescription Refills

Postby 2BassetMom » Thu Apr 26, 2018 5:37 pm

I've almost come up with a message that might work. Meanwhile in reading the notes that Dr. Poceta sent home with me from Scripps, I found that I can message him through a patient portal. I don't know how I overlooked this, maybe sleep deprivation? So if I don't get any further help from my PA I will go to the doctor who suggested the OxyContin ER and the oxycodone for day use I woke up this morning with restless shoulder, a special kind of torture of this syndrome. It is good to know that others are so understanding of this and offer such good advice. Thanks.

legsbestill
Posts: 476
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Prescription Refills

Postby legsbestill » Thu Apr 26, 2018 11:01 pm

Restless shoulder sounds awful. I hope you get your refill without undue trauma

2BassetMom
Posts: 150
Joined: Mon Mar 30, 2015 7:06 am
Location: Idaho

Re: Prescription Refills

Postby 2BassetMom » Fri Apr 27, 2018 4:23 am

Restless shoulder is awful! The only thing that can help is heat. It is the creepiest feeling. I sent off a carefully worded message to my PA tonight. Hopefully she will read it in the morning.

2BassetMom
Posts: 150
Joined: Mon Mar 30, 2015 7:06 am
Location: Idaho

Re: Prescription Refills

Postby 2BassetMom » Thu May 03, 2018 9:50 am

Good news: my PA is working with me to tweak the opioids to where I get some relief. She has listened and I am so grateful. Dr. Poceta at Scripps suggested an ER OxyContin at bedtime and a dose of oxycodone mid day. So far all I have been prescribed is the bedtime dose of 15mg OxyContin and that barely got me through the night. The days were filled with episodes of RLS, even in my hands, shoulder and arms. I relayed this info to my PA through the patient portal messaging. She just added 7.5 oxycodone to be taken during the day. I start that tomorrow and I hope that it will alleviate some of the RLS. I added back into the mix the Ropinirole 1/2 1mg tablet at night. The 1 mg tablet had caused anxiety but the 1/2 tablet does not. Feeling hopeful.

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: Prescription Refills

Postby Joanie60 » Thu May 03, 2018 10:12 am

Best of luck!! Maybe taking the short release during the day and taking the ER a bit earlier in the evening might bring continuous relief?? I know that is what we all aim for :-) I only took ER oxycodone for a very short period and let the side effects turn me off. I regret that now but also didn't like the swings of taking percocet every 6 hours either!!! Finally settled in with methadone which gives me 85-90% relief...it is worth tweaking and tweaking till you get there!!!

Let us know!

2BassetMom
Posts: 150
Joined: Mon Mar 30, 2015 7:06 am
Location: Idaho

Re: Prescription Refills

Postby 2BassetMom » Mon May 07, 2018 6:26 am

I have found there is not much improvement since I am taking the ER OxyContin at night and the oxycodone during the day. I have a good night without any rls and then the next night I'm waking up 2-3 times a night. There is improvement during the day. I am paying attention to what I eat and my activity level but haven't pinpointed any causes. I'll stick with the dosage now and message my PA how I'm doing. As our weather improves I'll be out walking more and maybe that will help. Feeling pretty low tonight as I would just like to go to sleep.

badnights
Moderator
Posts: 4867
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Prescription Refills

Postby badnights » Wed May 16, 2018 6:50 am

When you wake up, is it because of the symptoms, or is it an awakening without apparent cause? Once my symptoms became reasonably controlled with hydromorph contin, I found I couldn't sleep longer than about 10 minutes at a time, except for a 1-3 hour period right around when I was supposed to be getting up. I was given zopiclone and life became bearable after that. Insomnia apart from WED/RLS symptoms is common with us, especially, perhaps, with those of us who take opioids.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

2BassetMom
Posts: 150
Joined: Mon Mar 30, 2015 7:06 am
Location: Idaho

Re: Prescription Refills

Postby 2BassetMom » Thu May 17, 2018 4:20 am

I think you may have something there, I've been asking myself that very thing. Sometimes when I wake up it is just that-waking up and then in a few minutes the rls kicks in. I'll mention this to my pain management doctor's PA She is really helping me. She just ok'd my getting my OxyContin a day earlier than when I should because of traveling. It is good to have a trusting relationship with her.

ViewsAskew
Moderator
Posts: 15262
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Prescription Refills

Postby ViewsAskew » Fri May 18, 2018 8:33 am

If I wake up from RLS, I know it either because 1) I slowly exited deep sleep to stage 1 and in stage 1 could recall the sensations in my body when I awakened completely, or 2) I awakened and thought, gee, I'll go back to sleep only to feel the RLS start building before I could get back to sleep, but I really, really, really wish I were sleeping. When RLS is not involved, I read, walk around, look at my phone, etc.
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.

2BassetMom
Posts: 150
Joined: Mon Mar 30, 2015 7:06 am
Location: Idaho

Re: Prescription Refills

Postby 2BassetMom » Sat Jul 21, 2018 7:25 am

I had an unusual phone call the other day from my primary care doctor's nurse practitioner that I see for non RLS issues. I still hadn't gotten into a local sleep doctor and needed a refill on my Ropinirole so I saw her. We had a discussion about RLS and I explained to her what Dr. Poceta had suggested in the opioids to help my symptoms. She listened and asked a few questions but that was all. She has nothing to do with those prescriptions as I get them from my pain management doctor. She questioned my need for Ropinirole and Sinnement and I explained that one was to be taken every day and the other was used only occasionally for situations such as movie theaters, plane travel etc. as it is a fast acting med. I told her I only take it about every 2-3 weeks. She was skeptical but agreed to write those prescriptions. A day later I got a call from her and she was questioning my prescriptions for OxyContin and Oxycodone. She asked if I knew the side effects and said she was concerned. I explained the reason for taking both of them and told her that I had augmented on all the other dopamine agonists and that these were the only drugs left that could help. She said she had researched the use of opioids in RLS and couldn't find anything. So, I am dropping off print outs from the RLS Foundation and other sources for her to read. I thanked her for being concerned and told her not to hesitate to call with any other concerns. I wonder why she is following up on this when she is not the one who prescribes. In fact, she referred me to the Pain Management clinic that I currently to for the opioids. Strange and unsettling to say the least. I'm not worried too much because the PA at the pain management understands RLS and is working with me to find the right dosage to manage my symptoms.

ViewsAskew
Moderator
Posts: 15262
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Prescription Refills

Postby ViewsAskew » Sat Jul 21, 2018 5:21 pm

Unsettling, indeed.
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.

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: Prescription Refills

Postby Joanie60 » Sat Jul 21, 2018 5:33 pm

Backlash of the opiate abuse epidemic. I understand the medical profession is doing their best to undo the damage they wrought (together with big Pharna). We are the unintended collateral damage.

Scary


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