Has anyone had the side effect of muscle pain when taking Sinemet?

[ppanther]

I asked in a previous post if PD can cause pain. But final realized it was Sinemet causing it.

[Hikoi]

The opposite, muscle ache if I dont take it. But then again i can get dystonia particularly in my foot and that can be painful

[soup]

How did you link the pain with the sinemet?

[ppanther in reply to soup]

I had pain for awhile and just recently put it together that my pain would increase about a half an hour taking a dose of Sinemet.

[Kadie57]

I use 100 % Lavendar oil on my arms for cramping, it works fast, smells great. It used to be my legs were cramping then it moved to my arms.

[mistydog1]

I too seem to have the same issue when I take Sinemet. I get the pain in my arm, it eventually subsides in time.

[PatV]

Yes I get pain in my legs as it kicks in. But yes it beats the dystonia I get when I don't take it. The pain of kicking in passes especially if I get up an move about and even kick my left leg a bit. Awkward on a bus or plane. Yesterday my Access-a-ride that would normally take half an hour took two as we wound around Manhattan picking up and discharging passengers. I arrived nauseous and sore!

[grey]

I get instant relief from pain and aches when Sinemet kicks in. Without it, I find it hard to find a comfortable position and restlessly sit down, stand up, lie flat on my back, lie on my side ... It's like water torture.

Pain includes knots in abdomen, either side front; clawing foot; pain in right buttock shooting down back of leg; aching limbs. It can take up to two hours for sinemet to kick in.

[scottyt]

Pot for pain!

[etterus in reply to scottyt]

Do you know what strain your using? Also, is it muscle spasm pain?

[scottyt in reply to etterus]

Indica dominant marijuana..I have muscle spasm and joint pain and tremor

[HealthSeeker7]

My husband had the same pain that many of you are describing when he used to take Sinemet, but sometimes the Sinemet didn't kick in quickly to stop it. Increasingly, the pain went on for hours, ocassionally for most of the day reducing him to tears. The pain would also return as the Sinemet wore off. The muscle pain was excruciating and was getting even worse at night. He was getting suicidal.

His ordinary GP (who would never contact his PD specialist), jovially said there were more than 50 pain killers he could prescribe one by one until they found one that worked, but after prescribing only 3 pain killers that didn't even touch my husband's muscle pain, his GP gave up and told my husband he would just have to live with it! His PD specialist was equally unhelpful and disinterested.

As luck had it, during one particularly painful episode my husband said he could no longer tolerate, he made an emergency doctors appointment at our local surgery ... but his usual GP wasn't there so he got to see a new doctor. She was the most caring and helpful doctor either of us have ever encountered. She called a different PD specialist that very evening, a specialist she knew had a good reputation. He suggested some sleeping tablets that also helped reduce the muscle cramping which at least allowed my husband to get a good nights sleep unaware of the pain for awhile. We made an appointment to see this new specialist ASAP.

The new PD specialist was a godsend. He took one look at my husband writhing with pain and discomfort and said, "I know what's causing that" ... the Sinemet! He explained that some people go through this "side effect" as the Sinemet reaches maximum effectiveness, while others go through this as the dose begins to kick in as well as when it has nearly worn off. My poor husband was experiencing the latter, and sometimes throughout the whole dose. The specialist was so friendly and helpful and informative, speaking to us as if we were capable of understanding. (I wish more doctors treated their patients as if they had brains.) We learned so much from him.

The new PD specialist prescribed Stalevo and Pramipexole* as well as some other medications to help his muscles relax so he could sleep through any discomfort. After a couple of minor adjustments to doses (with the help of his angelic new GP contacting his very busy PD specialist at all hours on my husband's behalf) my husband was pain free and only had to tolerate brief muscle discomfort occasionally. He is now able to work full time again, walk long distances and follow his interests, which currently includes learning Karate. These two wonderful new doctors gave him his life back.

*We later found out from my husband's original GP that Pramipexole is a very expensive medication, which my husband gets for free on the NHS (National Health Service) here in the UK. His old GP made him feel guilty for costing the NHS so much money, but his new PD specialist disagreed saying, "You've worked hard all your life and made your contributions to the NHS, so you're worth it!" Needless to say, my husband has never gone back to his old GP or PD 'specialist'.

Later, his new PD specialist was also helpful in explaining how protein was interfering with the absorption of the dopamine when eaten before taking a dose - which we had been suspecting. He suggested my husband take his medication on an empty stomach as well as reduce the amount of animal protein he was eating. We discovered ourselves that some animal protein could hang around to still cause problems with the next dose, so my husband gave up all animal protein - he was already vegetarian, so he became vegan. The positive results were undeniable.

I hope this long-winded story serves to show that Sinemet can be a problem for some people, the possibility of a more effective alternative that may be denied or prescribed reluctantly because of its expense, and to encourage getting a second opinion in case you are suffering needlessly. There are angels out there who can help. Also, what you eat plays a big role in your health, whether or not you have PD.

[fronya69 in reply to HealthSeeker7]

Hello- healthseeker- I feel as tho u were talking about me.!!I have been taking sinemet since i was dx.05-01-2001. The last couple of years, i have been having severe cramping in the back side of my legs, from my buttocks to the inside of my knees. It has pure hell.!! I went 2 pain mgmt. at u of m. after morphine,butran's patch. Which didn't touch the pain. now i'm on oxycotin 10mg. 3xday. Because 2xday didn't help. Then out of no where, the cramps have returned full force.. Now check this out. my pain dr. suggested adding Tylenol 500mg. to my 800mg. motrin and my 81mg. baby asprin, and i no longer have muscle spasm's .This has been3 daze now..Keep ur fingers crossed! Fronya

[ppanther in reply to HealthSeeker7]

Thank you for telling me your story. I'm going to look into this.

My nuerologist suggested DBS. I thought this was a drastic move since I've only been diagnosed for 4 years.

[SKCW in reply to HealthSeeker7]

Hi, thank you so much for your story! My mom has only been on Sinemet for a month and is starting to have thigh pain. Can I ask you, did your husband get off Sinemet at the time he took the other drugs? I know this is an old message, but I thought I'd see if we could connect. Many thanks,

Sarah

[HealthSeeker7 in reply to SKCW]

Hello SKCW,

I'm sorry to hear your mom is now experiencing pain from taking Sinemet. I should have said that my husband stopped taking Sinemet when he started taking Stalevo and Pramipexole.

An update since 5 years ago - the Stalevo lost effectiveness a couple of years ago. My husband has replaced it with Mucuna Pruriens - a powdered bean that contains a lot of natural Levodopa (as opposed to synthetic L-dopa) - and he is thriving on it. It has proven to be more effective than either Sinemet or Stalevo ever was. It 'kicks in' quicker and more reliably. It also has neuro-protective qualities. Now we wish we had known more about it at the very beginning.

The pharmaceutical industry will not supply Mucuna because it

is a natural substance, so cannot be patented to make a profit on. And since the pharmaceutical industry trains medical doctors, you're unlikely to ever find any doctor who will say that Mucuna works, or is even safe. It might not work for everyone, but it certainly has for my husband, and without the painful side effects of Sinemet, or the ever decreasing effectiveness of standard synthetic Parkinson's medications.

I should say that my husband still takes Pramipexole to make sure he stays pain free, though I'm not sure it is really necessary when taking natural L-dopa.

I hope this is helpful.

Kind regards,

Ann

[HealthSeeker7 in reply to HealthSeeker7]

I should add that we buy Mucuna as cheaply as we can from online suppliers since it cannot be prescribed.

[Despe in reply to HealthSeeker7]

What is the brand name, strength, etc. Thank you!

[HealthSeeker7 in reply to Despe]

We don't know the strength of the L-dopa in Mucuna Pruriens as it is just a ground up bean, though I did once see that 16g of an 'extract' of MP contained 2g of L-dopa. I assume an 'extract' would have a greater concentration of L-dopa than just the ground up bean, so I estimate the dose of Mucuna powder my husband takes (1 Tablespoon MP powder dissolved in a little pure water) must contain less than 2g of L-dopa.

When compared to the 12.5g of synthetic L-dopa in each of the Stalevo tablets he used to take 5 times a day (total 62.5g synthetic L-dopa a day), he is taking considerably less L-dopa (natural L-dopa) now in each dose of Mucuna powder. For the last 2 years he has been taking 1 Tablespoon of Mucuna every three hours - average 8 times a day (total <16g natural L-dopa a day). Yet this much reduced natural L-dopa is far more effective for him than Sinemet or Stalevo ever was.

I have heard of someone else with PD benefitting from taking only a teaspoon of Mucuna a day. So my husband may have been able to take less if we had started with Mucuna instead of Sinemet 14 years ago when he was diagnosed. But he only started taking MP 2 years ago.

Here in the UK you can buy Mucuna Pruriens powder from many sources with prices ranging wildly. We usually buy ours from Detox Trading who currently offer the lowest prices - £21.50 per kg. We buy from 1 to 5 kg a time to save on delivery charges. Though we have bought MP from many different suppliers (including one who charged 3 times as much per kg), we haven't been able to determine any difference in quality or effectiveness. We have also not detected any harmful side effects from MP, even at what seem to be considered his high doses of MP.

We have not tried Mucuna extract as we have more faith in nutritionally rich whole 'foods' (beans are food, and our bodies probably recognise MP beans as a source of nutrition), and we would not personally bother with MP capsules because the doses would be too small for my husband's requirements, plus capsules of MP cost so much more than a bag of powdered MP beans. But everyone is different. Hopefully our positive experience will inspire more confidence.

[Despe in reply to HealthSeeker7]

I wholeheartedly agree with you! Natural L-dopa is the best for the body and mind. Thank you for your lengthy and informative reply. My husband has experimented with various brands and strength of L-dopa and are still in the experimenting period. Hopefully, it won't be too long before we find the ideal dose.

We are in the US.

[Crescendo in reply to Despe]

How is taking Mucuna pruriens working out for you?

What is your dosage?

[Despe in reply to Crescendo]

Half a Sinemet tablet with one to two NOW MP X 3 a day. At times, he skips mid-day Sinemet and takes 2 NOW MP with 1/2 tablet carbidopa. Works for my husband.

[Juliegrace in reply to HealthSeeker7]

Where have you seen or read that MP is neuroprotective?

[HealthSeeker7 in reply to Juliegrace]

ijrdpl.com/uploads/41/2520_...

It was a study done on rats. We hadn't seen any studies done on humans, but we decided to take a chance and try the Mucuna anyway. My husband seemed to get stronger and was happier when he reduced the pharmaceutical meds and swapped out most doses with Mucuna.

[SKCW in reply to HealthSeeker7]

Thank you sooo much. We are going to the doctor today, armed with a printed copy of your husband's experience. Thank you for taking the time to share this. I remembered your story when my mom started feeling pain. It made me look at the Sinemet first. Thank you!!!!!!

Wishing you all good things,

Sarah

[HealthSeeker7 in reply to SKCW]

I hope our story helps and your doctor is open minded. I would be interested to hear how the visit went if you're willing to share. All the best.

[SKCW in reply to HealthSeeker7]

Hi again, Yes sure! Well, it was interesting. She adamantly told me that it is not true that Sinemet causes leg pain, and went into what makes a PD doctor an expert or not. But directly after that she said that the leg pain can be from coming off the Sinemet. Internally I did one of those hmmm??!! dog head turns. So we're dealing with semantics here: Sinemet does not cause the leg pains, but the experience of being the Sinemet wearings off and on could (!) I asked her if we could start Stalevo. She said we could add the entacapone to our Sinemet to the same effect, but she didn't think it would necessarily help. So we went to go get the prescription and they said, just so you know, in addition to what the insurance pays, there will be a $300 co pay with the entacapone prescription. Yikes! What is going on with the healthcare industry? They didn't have it in stock. Came home and looked it up on goodRX.com. It says $135 at Walmart with their coupon. Will look into that more. Also, wanted to tell you that my mom was on Mucuna, as we tried the Heinz protocol method. She tolerated the mucuna powder (though hated taking it) well, but all the other amino acids they gave her in increasing amounts made her sick. We had to stop pursuing that. I don't think they know how to balance all that huge orchestra of amino acids the way that our brains do. Can I ask where you get your Mucuna and what percentage, etc.? We may end up going back to that. My mom is getting the acetylcholine she needs (hopefully) from the Excelon patch. She just recently got to the dosing amount that hopefully will help. She is getting her seratonin from Zoloft (which worked wonders in helping out of the blue nighttime anxiety) which also helps her sleep well. And she's getting her dopamine from the Sinemet.

All the best, Sarah

[bicyclingwithpd]

Dear PPanther,

I was diagnosed with PD in 2003 and have been taking Sinemet for over 8 years. I do not suffer any pain with either the PD or Sinemet but I take the Sinemet every y2-3 hours and the effects of the withdrawal for every is very severe, causing extreme tension and stress, distorting my ability to speak and move. no one knows why. I get good benefit for movement for about an hour for each dose and then the effects of the withdrawal start again.

[gps245]

Hi just thought you might like to know I have been on the maximum dosage of sinemet for the last 8 years to combat the pain caused by the condition of medication induced Parkinson disease but to side effects of an antisycotic it helps me enormously. Pgs

[Kia17]

Ppanther

Have you ever tried low carb diet and intermittent fasting? I believe these 2 can totally eliminate the PD associated pain if followed with vitamin B1 protocol.