Trying to get off Sinemet

[betternowman]

Still stuck on Sinemet (100mg levidopa/25mg carbidopa) which augmented causing severe muscle rigidity along with the worsening RLS convulsions. It was originally prescribed over 2 years ago to reduce potential damages to 4th spinal surgery. No one realized it would be so difficult to stop. I tapered off all the opiates and that was easier. Currently need 1/4 Sinemet tablet every 2 hours to keep muscle rigidity at bay. That's 3 tablets/day. Otherwise have trouble breathing with chest muscles so tight. Rest of body just as rigid too. Anyone had success getting off Sinemet? Really need help with this!

[Joolsg]

I'm so sorry you're having such trouble on Sinemet. However, you may want to consider taking legal advice. 2 years ago the dangers of Sinemet were VERY well known. It hasn't been prescribed for RLS by knowledgeable doctors for a very long time because of the very high risk of severe augmentation of RLS symptoms and the difficulty getting off it.The only thing I can suggest is to ask for the lowest dose pills and slowly reduce over aa minimum of 6 months. Can I check what dose you're on? You say you take several pills a day. What's the total dose per day? The higher the dose, the more difficult the withdrawal so do not increase the dose.

If you can see an RLS expert at one of the US centres of Excellence, they would help you off this poison. Where in the USA are you?

Usually, a low dose opioid is prescribed to help the withdrawal symptoms but you mention that you came off opioids.

What were you taking, what dose and why did you come off them? Opioids at low dose are highly effective for RLS.

You should check you're not taking meds that worsen RLS like sedating anti histamines and cough and cold remedies and anti depressants, statins, beta blockers and PPI gastric meds.

You should get your bloods taken and ensure serum ferritin is above 100, preferably 250 as this can reduce sone of the augmentation.

[betternowman in reply to Joolsg]

Thanks so much for your reply! I am in Boulder, Colorado. Is there a RLS expert at one of the US centres of Excellence near me?

Currently need 1/4 Sinemet tablet every 2 hours to keep muscle rigidity at bay. That's 3 tablets/day (100mg levidopa/25mg carbidopa).

During series of 8 surgeries in 2018-19 I was on dilaudid then oxycodone then hydrocodone the finally tramadol during 2020 and up to May 2021 when I finally finished tapering off completely. Last 2 weeks at end of May was final taper with kratom. No opiates now for 6-7 months.

Currently I am completely drug-free except for the sinemet but am experimenting with CBD oil which does seem to enable sleep a bit more easily.

I had two massive iron infusions a year ago but the doctors decided to discontinue after seeing no improvement. Not sure what current levels are. They were pretty high after the infusions.

I also tried using mucuna to help taper off the sinemet but ended up having to increase instead of diminish the sinemet. It seems that any sudden changes in neurotransmitters make things worse rather than better.

[Joolsg in reply to betternowman]

That's a very high dose if sinemet. Sadly, getting off sinemet will be worse than getting off opioids but kratom will help.The problem in the USA is that all RLS experts are on the coasts, the middle has a real shortage of doctors with knowledge. You're in the middle of 2 centres- Mayo Clinic in Rochester Minnesota and the clinic run by Dr. Buchfuhrer in Redwood California.

However, as most appointments are now video appointments, you could contact both. Dr Michael Silberman at the Mayo Clinic co wrote the latest RLS algorithm. Sinemet is now bottom of the list of RLS treatments as it has the highest risk of Augmentation.

In the meantime, slowly reduce the Sinemet. Instead of taking a 1/4 pill every 2 hours, take 1/4 pill every 3 hours for 4 weeks. Then every 4 hours for the next 4 weeks. Then every 5 hours for 4 weeks. Then every 6 hours for 4 weeks. The idea is to reduce it slowly over a Minimum of 3 months but in your case, I think you'll need longer.

Hopefully you will get an appointment and the new doctor will prescribe low dose opioids or pregabalin to help the severe withdrawal symptoms.

It will be really tough but the severe RLS You're experiencing now is totally because of sinemet.

Consider joining rls.org as you will be able to access all research papers, print them off and show to your doctor. He probably knows nothing about augmentation of RLS symptoms caused by sinemet or that he shouldn't have prescribed it.

I hope you can get a video appointment with either Dr Buchfuhrer in Redwood or Dr Silberman at the Mayo.

[betternowman in reply to Joolsg]

should I add kratom and pregabalin to CBD oil in quest to ease muscle rigidity while tapering off the sinemet? I've been reluctant to get dependent on any more drugs but tapering off those later would probably be much easier than getting off the sinemet...???

[Joolsg in reply to betternowman]

You could take pregabalin and slowly taper up to the dose for RLS ( 150- 450) and kratom seems to help the withdrawal symptoms from sinemet so use as you reduce the dose.Push for a specialist appointment because your spasms sound severe and if it affects your breathing you need your medical team to know.

[betternowman in reply to Joolsg]

Thanks... and I found Dr Buchfuhrer here: stanfordhealthcare.org/doct...

But Mayo clinic does not acknowledge existence of Dr Michael Silberman

[Joolsg in reply to betternowman]

My apologies. It's Michael Silber. He co wrote the Mayo Clinic Algorithm and this shows his address.

Text

[Joolsg in reply to Joolsg]

I've corrected the details in case anyone else wants to contact Dr Silber.

[betternowman in reply to Joolsg]

thanks... I found him here: mayoclinic.org/biographies/...

[betternowman in reply to Joolsg]

Dr Buchfuhrer in Redwood won't consult with out-of-state patients because of Calif law... expecting news from Dr Silber tomorrow...

[Joolsg in reply to betternowman]

Fingers crossed.

[betternowman in reply to Joolsg]

they allowed beginning of application process to hopefully have video conferences with dr silber.... will take a few days... I opened online portal and will have my GP Dr send referral... we shall see...

[Joolsg in reply to betternowman]

He is one of the top world RLS experts so you will be in excellent hands. I wish you a peaceful Christmas and a hopeful, RLS free New Year.

[involuntarydancer]

This sounds like a particularly severe response. I haven't heard of this muscle rigidity response to withdrawal from any dopamine agonist previously. You mention that you discontinued opioids but don't say when you did this. Is there any chance the muscle rigidity is a left over symptoms from opioid withdrawal? It took at least six weeks from taking the last opioid for the withdrawals to resolve when I last discontinued them. Unfortunately, RLS is a symptom of opioid withdrawal so worsened symptoms after discontinuing an opioid can be expected.

I agree with Joolsg that it is important to get off sinemet but given your response you should probably do this at a VERY gradual rate. Perhaps a quarter of one of your daily doses to start off with. And leave at least a week between each reduction. It is also very good advice to get your iron levels checked. I have read that high serum ferritin can help reduce the dreadful increase in symptoms experienced during withdrawal from dopamine agonist drugs such as sinemet.

Finally, be very cautious about the advice you get from your medical advisors. They often know very little about RLS and its treatment and it is sadly very common for medical advisors to recommend treatments that will ultimately cause even more significant suffering to RLS sufferers. In your case, this is even more important as you were prescribed sinemet which has been counter-indicated for RLS for quite some time now. It is important to educate yourself.

[betternowman]

Thanks so much for your response! Yes it is a shame that my Gen Practitioner didn't know how dangerous it would be to use the Sinemet (which is dopamine rather than dopamine agonist). Big big mistake. Partly my fault for mentioning it though. I had memories of my mom having used Sinemet for her RLS decades ago.

I was on dilaudid, oxcycodone, hyrocodone during 2019... so many surgeries... than tramadol for a year and a half... but I am opiate-free now for 6 months. The muscle rigidity is tightly correlated with my every-2-hr dose of Sinemet. If I am even a few minutes late the condition worsens and I am living in pretty severe constant discomfort from the rigidity but trying so hard not to increase the Sinemet dose. A couple of months ago I was squeaking by on only 1.5 tablets/day by breaking the pills into sixths instead of quarters and taking every 3 hours instead of every 2 hours. Then my experiments with mucuna kicked me into much more muscle rigidity and I had to increase the Sinemet to be able to breath. My chest muscles get so rigid my breathing become short gasps for breath with long periods of time between. It's not quite so bad during daytime when the RLS is less active and I am awake.

I had two massive iron infusions a year ago but the doctors decided to discontinue after seeing no improvement. Not sure what current levels are. They were pretty high after the infusions.

My neurologist did DAT scan to make sure I don't have Parkinsons. I don't. After that I think she gave up on me. I don't make sense to her.

[Sillylily]

I am so sorry that you are going through such a difficult time. I wish I could give you some helpful advice to get you off the Sinemet, but I think that your best bet is to see Dr. Buchfuhrer. I am currently on 15 mg of methadone and 75 mg of lyrica daily. Dr. B has prescribed Sinemet for breakthrough RLS but never more than 1 tablet once or twice per week. I rarely take it. Dr. B sees patients at Stanford but only one time per month. It is much easier to see him in his Downey office. Tell the staff that your RLS is out of control when you call and they will get you in ASAP to see him. The number to his office is 1-562-904-1101. Best of luck to you.

[betternowman in reply to Sillylily]

Ok... thanks for Dr B's phone... I am in Colorado so will have to be video... but I am really struggling... my body freezing up on me slowly but surely...