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. And that it's not even approved for daily use in RLS patients. I had an appointment with my neurologist yesterday and clearly stated what I wanted. First off, my ferritin is 50 and my iron saturation is 31%. I started on oral iron with vitamin C but want to try an IV infusion of iron. She was fine with that. Then I discussed my wish to switch medications from sinemet CR to pramipexole. I asked her to figure out the equivalent dose and start me on new drug. Then, I would need to taper down to approved dose for RLS patients. She was shocked that I asked for this change. Said her patients do better on sinemet CR and "none have experienced augmentation". She said it would be awful to change drugs and that pramipexole has high rate of augmentation. She had no idea why I would want to do this to myself. So this is how things ended: in order to switch, she could put me on pramipexole ER (stated that it is very expensive, I might not be able to purchase it) so if not the ER, she could start with regular pramipexole. Then she would need me to keep taking some Sinemet CR for a few weeks because side effects will be terrible. And she could give me gabapentin to help with sleep.

I need some advice from this community on how to proceed. Unfortunately, I do not have another neurologist to consult with in the immediate future. I can't find another story of someone who started on such a high dose of sinemet, and then went to pramipexole and then tapered down to a much lower dose.
Any thoughts would be appreciated.

[Polar Bear]

I'm sorry you are suffering so badly from augmentation. Through your own research you have learned that Sinemet should not be taken regularly and is very prone to causing augmentation.

You mention discussing an IV infusion of iron with your doctor. Are plans afoot to arrange this or is it on hold. With your Ferritin Serum at 50 it can take a long time to raise it with oral iron.

Your doctor has said that it will not be easy changing drugs and it is indeed a difficult journey. You would need to wean off the Sinement slowly and under the care of your doctor. She has said that she would prescribe Gabapentin for sleep but it is likely that the Gabapentin would struggle with the more severe symptoms as you would reduce the Sinemet. To ease the reduction of Sinemet you could ask your doctor to prescribe a low dose opioid.

Pramipexole is a Dopamine Agonist and the RLS experts no longer consider this a first line treatment. Sinemet is also a Dopamine Agonist.
To change from one to the other, you would be taking the same class of medication. Why have you asked to change to Pramipexole.

My own experience is of reducing from a very high dose of Ropinerole, which is also a Dopamine Agonist. To reduce doctors may say to do this over a few weeks. I had tried to reduce this way several times and found it too difficult and gave up.
Eventually I did it my way, very slowly, bit by bit over 10 months. My doctor was understanding and prescribed Co-Codamol to support me. I was also taking Pregabalin (which is a sister drug to Gabapentin) because of neuropathy and had the benefit that Pregabalin also helps with RLS. This time my reduction was successful and I came off the Ropinerole without any great hardship even if it did take 10 months.
My RLS which is 24/7 is now pretty well controlled by CoCodamol 30/500 max dose, and Pregabalin at the daily max dose.
Please do note that this is only my experience. I have no medical background.

Finding an understanding doctor is a challenge.
There are 12 RLS Quality Care Centres where the doctors are sympathetic and understanding.
and I have attached a link. I understand getting an appointment can be difficult.
https://www.rls.org/treatment/quality-care-centers

[Polar Bear]

Just to add. When my rls was not well controlled I found that putting my legs into a bucket of really icy cold water helped greatly. I'd splash the water up to my legs to my knees. It would take about 15/20 minutes and then the symptoms would fade long enough to let me try to sleep.
Others find that a hot shower on the legs works.

[ViewsAskew]

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. And that it's not even approved for daily use in RLS patients. I had an appointment with my neurologist yesterday and clearly stated what I wanted. First off, my ferritin is 50 and my iron saturation is 31%. I started on oral iron with vitamin C but want to try an IV infusion of iron. She was fine with that. Then I discussed my wish to switch medications from sinemet CR to pramipexole. I asked her to figure out the equivalent dose and start me on new drug. Then, I would need to taper down to approved dose for RLS patients. She was shocked that I asked for this change. Said her patients do better on sinemet CR and "none have experienced augmentation". She said it would be awful to change drugs and that pramipexole has high rate of augmentation. She had no idea why I would want to do this to myself. So this is how things ended: in order to switch, she could put me on pramipexole ER (stated that it is very expensive, I might not be able to purchase it) so if not the ER, she could start with regular pramipexole. Then she would need me to keep taking some Sinemet CR for a few weeks because side effects will be terrible. And she could give me gabapentin to help with sleep.

I need some advice from this community on how to proceed. Unfortunately, I do not have another neurologist to consult with in the immediate future. I can't find another story of someone who started on such a high dose of sinemet, and then went to pramipexole and then tapered down to a much lower dose.
Any thoughts would be appreciated.

Sometimes I feel like we are still in the 1980s. I feel so angry on your behalf, as well as commiserate completely with how difficult this situation is for you. I wish I had a magic wand.

This is mostly personal experience or conjecture, so take it that way, please. I am not a doctor. I augmented in about a week, taking a teensy dose of pramipexole. My dr increased it regularly until I was on it 24/7 and was taking many times the original dose. I did what you did when things were particularly untenable - research. And, it brought me here (in late 2004 - doctors making poor calls re DAs has been going on for a looooooong time). We didn't know about DAWS then, but I wasn't about to just stop taking it, so I reduced it back to my original dose, stepping down every 4-5 days.

And, fascinatingly, my symptoms actually improved. Oh, don't get me wrong, I still was horribly augmented and I clearly needed a solution, but it was a bit better. And, don't get me wrong, stopping it was a whole 'nother level in hell. But, at least I was closer until I could find a new doctor.

We've watched many people lower their crazy-high doses of DAs over the years. If you search on augmentation, you can read many. Few have been in Sinemet in any form, though some have. I don't remember the doses. Most were on Parkinson levels of ropinerole or pramipexole. I don't think I remember most of them suffering terribly during that step down process. It took some many months to do it, but things weren't terribly worse.

Also, one of our moderators, Rustsmith, lives in Colorado (if that is where you still are) and may have some doctor options for you, depending on where you are.

Lastly, I don't know if he still does it, but for many years, Dr Buchfuhrer, a California specialist in this hideous disease, has answered emails from people such as yourself (and me, back in the day). He would likely know what your best option would be.

[beckycolorado]

Yes, I have been in touch with rustsmith and he has been tremendously helpful. Told me his doctor group in Denver and am now trying to get an appointment there. Could take 6 months or more. Scared to even do an extremely slow taper of sinemet because of withdrawal and not having supportive doctor. So I'll look through Augmentation forum and read about others experiences.

[beckycolorado]

I'm sorry you are suffering so badly from augmentation. Through your own research you have learned that Sinemet should not be taken regularly and is very prone to causing augmentation.

You mention discussing an IV infusion of iron with your doctor. Are plans afoot to arrange this or is it on hold. With your Ferritin Serum at 50 it can take a long time to raise it with oral iron.

Your doctor has said that it will not be easy changing drugs and it is indeed a difficult journey. You would need to wean off the Sinement slowly and under the care of your doctor. She has said that she would prescribe Gabapentin for sleep but it is likely that the Gabapentin would struggle with the more severe symptoms as you would reduce the Sinemet. To ease the reduction of Sinemet you could ask your doctor to prescribe a low dose opioid.

Pramipexole is a Dopamine Agonist and the RLS experts no longer consider this a first line treatment. Sinemet is also a Dopamine Agonist.
To change from one to the other, you would be taking the same class of medication. Why have you asked to change to Pramipexole.

My own experience is of reducing from a very high dose of Ropinerole, which is also a Dopamine Agonist. To reduce doctors may say to do this over a few weeks. I had tried to reduce this way several times and found it too difficult and gave up.
Eventually I did it my way, very slowly, bit by bit over 10 months. My doctor was understanding and prescribed Co-Codamol to support me. I was also taking Pregabalin (which is a sister drug to Gabapentin) because of neuropathy and had the benefit that Pregabalin also helps with RLS. This time my reduction was successful and I came off the Ropinerole without any great hardship even if it did take 10 months.
My RLS which is 24/7 is now pretty well controlled by CoCodamol 30/500 max dose, and Pregabalin at the daily max dose.
Please do note that this is only my experience. I have no medical background.

Finding an understanding doctor is a challenge.
There are 12 RLS Quality Care Centres where the doctors are sympathetic and understanding.
and I have attached a link. I understand getting an appointment can be difficult.
https://www.rls.org/treatment/quality-care-centers

Thank you for your reply. Doctor said I could get an iron IV therapy whenever I wanted. So I think I will try this first.

My thinking behind switching from sinemet to pramipexole is that pramipexole has a longer half life. I would start at equivalent dose then taper down over long period of time, knowing I may need an opiod to be successful. If my chances of success would be the same just staying on sinemet and doing a slow taper, I would try that.

I have tried getting consultation at two of the QCCs but no luck yet. Johns Hopkins will not see anyone who doesn't live in Maryland and the Mayo Clinic said it would review my referral and medical records when it receives them. But that still doesn't guarantee it will accept me as a patient. I may have to try for an appointment at one of the lesser known centers. If anyone has received an out-of-state consult at care center, please let me know.

It sounds like I've got a long road ahead and should focus on getting an appointment in the Denver area first. Rustsmith gave me name of his doctor group and will work on getting in there.

[Polar Bear]

To know you have the option of an IV iron therapy is a blessing.
It doesn't work for everyone but there are those here who have had good success.

I live in the UK and our system is very different. However we do have the same challenges of finding a good RLS Consultant. Here in N Ireland we only have one Movement Disorder Consultant and I had a 3 year wait for an appointment.

I understand your reasoning with regard to the Sinemet/Pramipexole and tapering.
Your fear about tapering is very understandable. I've been there and was terrified. But, I did it.
Bear in mind that while tapering you can always take a pause and let all settle before the next reduction. At one point during my taper I actually went back up by a minimal.amount for a couple of weeks before taking the step down again. My steps down were always very small. I halved and quartered pills.

I hope you are successful getting to see someone relatively near your home, in particular the doctor group in the Denver area.

Its a shame it's so difficult getting an appointment at the QCCs. Such demand.
I wish you well.

[ViewsAskew]

Ah, I forgot to include Dr B's email - somno@verizon.net, if I remember correctly. Here is where he posts the letters: https://www.rlshelp.org/

[beckycolorado]

Ah, I forgot to include Dr B's email - somno@verizon.net, if I remember correctly. Here is where he posts the letters: https://www.rlshelp.org/

thank you!

[Rustsmith]

If you are thinking of one of the QCC's, you are not that far by plane from Dr Ondo in Houston, Dr B in LA and the Stanford Sleep Clinic (Dr B's students) in San Francisco. The flight times from Denver to all three are not all that onerous compared to a single bad night with no sleep.

[beckycolorado]

If you are thinking of one of the QCC's, you are not that far by plane from Dr Ondo in Houston, Dr B in LA and the Stanford Sleep Clinic (Dr B's students) in San Francisco. The flight times from Denver to all three are not all that onerous compared to a single bad night with no sleep.

thanks Steve. Since I finally got a referral from my Boulder neurologist to neurology dept at UC, I'm going to try that first. I'll let you know how it goes. Houston and California are good choices for next step.

[beckycolorado]

Ah, I forgot to include Dr B's email - somno@verizon.net, if I remember correctly. Here is where he posts the letters: https://www.rlshelp.org/

thank you!

I wanted to follow up with you. I decided to make an appointment for a consultation with Dr. Buchfuhrer at the end of July. I still can't get an appointment in CO with preferred doctors, so after contacting his clinic in Downey, a consult seemed like a good first step. I'll let you know how it goes and what he recommends for me.

[ViewsAskew]

Ah, I forgot to include Dr B's email - somno@verizon.net, if I remember correctly. Here is where he posts the letters: https://www.rlshelp.org/

thank you!

I wanted to follow up with you. I decided to make an appointment for a consultation with Dr. Buchfuhrer at the end of July. I still can't get an appointment in CO with preferred doctors, so after contacting his clinic in Downey, a consult seemed like a good first step. I'll let you know how it goes and what he recommends for me.

I hope it goes well. I am working with him now as I transition from methadone to buprenorphine. He is usually quite responsive to his patients.

[beckycolorado]

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.

[Rustsmith]

I suspect that the answer to your question is that very few ever taper off of opioids after they have gone through augmentation. The problem isn't getting off of the opioid, that can be done in a day or two. The issue is what your untreated RLS would be like. That varies from person to person. If your untreated RLS is fairly mild and you can relieve your RLS symptoms by elevating your ferritin level to whatever level you need, then tapering off the opioid would be feasible.

The problems are:
1. RLS is known to get more severe with age. If you have mild or low moderate RLS today, the will probably be worse 10 yrs from now.
2. Iron therapy doesn't help everyone. Some of us have issues (probably genetic) with transport of iron into the brain. Even dangerous levels of iron won't help with resolve RLS for those of us like that.
3. Even if increasing your ferritin helps, the target ferritin number will vary from person to person. The guideline of ferritin over than 100 is easy since most RLS patients with numbers below that have issues. That doesn't mean than a ferritin number of 125 works for everyone that benefits.
4. Even if you find your magic ferritin number and can achieve that level with iron infusions, the infusions are not a matter of one-and-done. Your body will naturally excrete the extra iron over time, which means that you will need another infusion.

So, for many of us, it is easier to accept that we will be taking a daily opioid for the rest of our lives in the same way that Type 1 diabetics get daily injections, many people take cholesterol control meds forever, heart patients take blood thinners, etc. etc. etc.