New Member taking high dosage of sinemet CR

[beckycolorado]

I have been so hesitant to post about how I got to point of taking so much sinemet cr. But I need this group's help.

Initially, I started having sleep/insomnia issues in 2005. Became severe so starting taking 15mg of temazepam nightly. Psychiatrist also prescribed 10mg lexapro and I finally tapered off of this medication recently. I know I had RLS during this time. I could get by with lots of stretching at night and taking sleep medication. In 2022, I mentioned my increasing RLS symptoms to my internist and she prescribed gabapentin. I started at 300mg and moved up 900mg/day.

I saw the neurologist in Feb 2023 because RLS was becoming more of an issue. Many nights, I would thrash my legs for hours before I could fall asleep. She immediately put me on Sinemet CR 50/200mg. I am now taking 3 tablets a day. And I'm experiencing symptoms earlier in the afternoon and some mornings. So I'm clearly augmenting.

In the last month, I have thrown myself into learning more about RLS and the medications used for treatment. That's when I learned about the high augmentation rates of Sinemet.

It's been awhile since this post so I thought I would provide an update on my progress. I saw Dr. Buchfuhrer at the end of July and he recommended I switch to Suboxone and go cold turkey off Sinemet. But, he said if I was experiencing RLS symptoms, I should take a Sinemet and then message him. So cold turkey but not really in a strict sense. I was very worried about this. I was worried about being in pain, about being on an opioid, you name it, I was worried about it. I talked to a few people from this community about their experience with Suboxone. Finally, I just needed to have faith in the process. In mid-August, I took my first dose of Suboxone at 5pm (1/2 of a 2mg film so 1mg). Dose was probably too high and I felt very dizzy. I felt RLS symptoms start at around 10pm so took Sinemet then. It took 5 days to stop taking Sinemet and take Suboxone. We have settled on a Suboxone dosage of 3/4mg per day (1/8th of a film, 3 times a day). My RLS has been controlled quite well and I have minimal side effects. Next hurdle for me is to taper off my benzos. I start to work with a taper coach in October. I plan to do a slow taper.

So it's been a lot these few months. But I have a plan and that feels good. It's nice to have my RLS controlled and not be tied to an DA. So I'll post again if things change. Thank you to everyone who helped me during this time. This board and community have been invaluable.

[Polar Bear]

Thank you for your update.
It's so good to read of your positive appointment with Dr B and how your RLS is now much better controlled. To have a plan going forward gives some confidence and positivity.
(Dr B is wonderful and many times in the past he gave me guidance via email even though I am not his patient.)
Well done on coming off the DA and good luck as you wean off the benzos.

[ViewsAskew]

I'd like to follow-up on my original post. I met with Dr. Mark Buchfuhrer this week. His proposal would be to replace my sinemet with the opioid, suboxone. He told me about the side effects of suboxone, namely constipation and also the risk of tooth decay. He said to see my dentist within a month of starting it to do a thorough check. He said he has done this many times with success.

My question to the discussion group: Has anyone been able to taper off their opioid medicine? Ever?

Just over two years ago, I was on no medication for RLS. I stretched and shook (very vigorously) and took a sleeping pill and was able to sleep (it probably masked the minor RLS symptoms I had throughout the night). Now, after being on sinemet, I've augmented and am now faced with having to use an opioid to control worse symptoms.

What you cannot know now is how your symptoms are without medication. You can try to tough it out yourself (several people here have - I wasn't able to) or use medication to help you do it. Once you pass the 2-3 week mark when using an opioid, you can taper off of it and see how your symptoms are. If they are back to where they were, you can try gabapentin - or nothing - if they are mildish or moderate. If, in the 2 years you were on the DA, your symptoms have worsened (mine had), you may be in the moderate or severe range now and need something.

Per the benzos, a slow taper sounds like a good option. It took me about 6-8 months (so long ago, I don't really remember).

[beckycolorado]

Yes, that's my next challenge - to see if I can taper off the opioid and see what my baseline symptoms are. Baby steps, though! I want to get through the benzo taper first. I feel that is so important. I know other neurologists won't treat me if I'm on an opioid and a benzo. Dr. B said since my benzo dosages were so low and I have no COPD, etc., (he is a pulmonologist), he wasn't concerned about respiratory distress. But one RLS doctor at UCHealth in Denver said he wouldn't prescribe me an opioid since I take a benzo. So that's the plan.

[ViewsAskew]

Yes, that's my next challenge - to see if I can taper off the opioid and see what my baseline symptoms are. Baby steps, though! I want to get through the benzo taper first. I feel that is so important. I know other neurologists won't treat me if I'm on an opioid and a benzo. Dr. B said since my benzo dosages were so low and I have no COPD, etc., (he is a pulmonologist), he wasn't concerned about respiratory distress. But one RLS doctor at UCHealth in Denver said he wouldn't prescribe me an opioid since I take a benzo. So that's the plan.

Keep us informed - we're hear as a sounding board and to share our experiences. Hope it goes well. I seem to recall that about 50% of people have no difficulty stopping benzos - maybe you'll be in that group.