my dad has Parkinson’s disease and was dx in 2018, he’s tremor dominant and started c/l last year around June.
Once he began the medication it gave him stiffness and made his mobility worse. He expressed this to his doctor and his response was to up the dose. However, by upping the dose it amplified his leg cramps, stiffness and made it difficult to walk. He’s come off of the medication for a month now and his gait and walking is perfectly normal and he does not get the muscle aches he gets when he is taking the medication.
He expressed to his doctor that he would like to try other Parkinson’s medications, or if there could be any add ons as we’ve seen multiple people with PD taking a mixture of medications rather than just one. The doctor expressed that there are no other medications that would help and it’s pointless to try anything other than what he’s prescribed right now. Which is 25/100 generic c/l 3x a day.
**the stiffness and leg cramps alongside spinal back pain only occur when he’s taking the c/l
Has anyone else with PD experienced the same response to generic c/l and if so did you have success with other brands or mixtures of meds?
I forgot to mention that the c/l does eliminate all his tremors and gives him energy but the downside is it makes his legs, feet, and back stiff and painful.
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I have been fortunate to benefit extremely well from generic 25/100 carbidopa levodopa. However, if I had not responded well and the doctor suggested there was nothing else to try, I would seek a Movement Disorders Specialist for a second opinion regarding my diagnosis and regarding my treatment plan. Most people with idiopathic Parkinson's respond well to carbidopa levodopa, at least initially. Those who don't are either misdiagnosed or in need of a good specialist to prescribe something else. Good luck!
Hi, I’m glad to hear you had a positive reaction to the c/l !! We are in the process of switching over to a new MDS as the specialist my dad currently has is not much help, he really doesn’t seem to care and brushes things off. My dad has tremors, sometimes balance issues, and without c/l he lacks energy. The c/l would’ve been perfect for him if it weren’t for the mobility and stiffness issues it brings on. Hopefully we find a better treatment plan soon.
"the medication it gave him stiffness and made his mobility worse. He expressed this to his doctor and his response was to up the dose"
This stiffness is a clear sign of overmedication. It is ignorant and irresponsible to up the dose in response to that adverse effect.
Prior to my afternoon hike the most C/L extended-release I can tolerate is one half of a 25/100, in other words one 12.5/50 dose. Extended-release has a much lower peak plasma level than the default immediate release that is usually prescribed. Any more than that and I have stiffness which interferes with my ability to walk.
Try him on one half dose of his 25/100. Also see if you can persuade the physician to let him try the ER version.
See also my post: Levodopa Overmedication – Common, Unrecognized, Devastating
my husband is the same, with more making him rigid and anxious and suicidal. He found the ER too strong too though as although it is supposed to be weaker it seems to build up over time.
he just restarted his c/l as of yesterday (his specialist wants to see him on the meds for an in real life evaluation in November ) and is only doing one half for now. I think he is the same as you in terms of only being able to tolerate one half as anything more brings on stiffness. Not only did the pain and stiffness get worse for him when he was told to up the dose but he developed dyskinesia as well. We will try and ask about the ER version !! Thank you.
yes but be careful with it. It made hubby extremely sick. I think for people who can tolerate the 100/25 it might be great but if he can only tolerate the 50/12.5 he might be like my hubby and find it is too strong. The problem is the tail of the dose is quite long and thick and when you overlay doses each one pushes you higher. See picture. But PD nurse doesn’t seem to differentiate between side effects at bottom and top of pill cycle and said he needed to go higher and push through it. She said the sundowning at night was just progressing PD. When we tried that his throat went rigid and he could hardly breathe and he became desperate to kill himself. This took a week to get to this state. For the first 3 days he felt great. So make sure he is properly monitored especially at night after a few days just in case. Now back on the fast release tablets he is as happy as Larry and the sleeplessness, constipation and sundowning has gone completely.
Thank you, we will keep that in mind and take caution in case he ends up trying it. It’s quite tricky dealing with the right fit of medication for a PWP as everyone has such different experiences and reactions. I think we are going to try and ask if there’s any add on medications that could possibly help remove the stiffness side effect he is getting from the c/l first, as someone mentioned within the comments that another medication help remove the back pain his mother was experiencing.
Does he get bad anxiety? A tiny amount of clonazapam was helpful. 1 x 0.5 mg tablet cut up and spread throughout the day. This has also been used in treatment for stiff person syndrome which is a rare disorder to relieve rigidity. It works on the GABA pathways which creates calm. I think stiffness can be exacerbated by anxiety so controlling that can control stiffness.
Also see my post yesterday on fascia. It could be some massage work on the fascia could help although if he is like my husband he doesn’t want to try things.
One thing we did was to get a genetic analysis done on him through opus23 which came back with his seratonin and dopamine pathways being blocked and very fast dopamine beta-hydroxylase which means he breaks down the medication much faster than average which probably accounts for all his symptoms and reactions to medications as it spikes too high and too early then runs out too quick. But of course the doctors look at you like you are mad if you mention it and completely disregard it.
oh, thanks for replying! my dad is taking the immediate release C/L Sinemet. i'll call the pharmacy and double check if we can half them. i do not see a score on those pills
Are you sure? That runs contrary to everything I have been told about ER. Certainly the mere fact that the tablets are scored doesn’t mean they can be brokenmedicines.org.uk/emc/produc...
Based on how my body responds, I am certain, for generic C/L 25/100 manufactured by "Accord HEA". Label says "Do not crush or chew" but no prohibition on splitting.
Strange that the vendor at your link supplies a scored tablet and then says not to break.
My HWP (diagnosed 17 years ago) is exactly the same with Madopar (and sinemet). His neurologist also upped the dose from 50mg to 100mg so we have to cut the tablets in half. Hubby still has pain but none of the healthcare professionals know where it is coming from or what is causing it.
I didn't think hubby was right when he said the higher dose made him feel worse because he can get confused sometimes but now you've mentioned your father is the same, perhaps my hubby was right.
yes, I think your husband was correct because when the dose was increased my dad could barely walk and had to lay down in bed several times a day to try and alleviate the pain. The second he stopped taking c/l it was as if nothing happened no pain, no stiffness, no muscle aches.
As I said recently in these columns some other medication may be necessary to solve the problem of pain. I.e. my mother who is pwp complained of terrible pain in her back. Her doctor added 50mg and then 100mg of Safinamide. Now her back pain disappeared.
wow, was the Safinamide prescribed by the neurologist? or PCP? or a different specialist? my dad has back pain as well and is bradykinesia dominant. no tremor but hasn't had 'real' relief since adjusting the parkinson meds of c/l and mirapex due to hallucinations side effects.
op! has your dad tried Safinamide? how's the new MDS and their take on the treatment?
It was prescribed by her neurologist but since that episode she stopped taking Safinamide because of unpleasant side effects. Now she takes Oxycodone but it's not that effective.
I would think that close medical supervision, to achieve the right dosage of C/L would be appropriate; however, if one has Neurology appointments, only once or twice a year, this may not be happening, with some patients! It has been my experience, that when I had a diagnosed Neurosurgical problem, pre-op, and post-op appointments, handled by a team, of various medical care specialists, at a neurosurgical clinic /hospital setting, took better care of my needs, and concerns, as compared to me having just one Neurology Doctor, and no follow up medical associates, to deal with the many symptoms and concerns, of my having diagnosed Parkinson’s Disease, and Cerebellar Ataxia! Since my diagnosis, about 6 years ago, with PD, and Ataxia, as an example, I have appointments with the Neurologist only once or twice a year. I have had at least 3-6 falls every year, have had several bouts of PD related heart palpitations (autonomic system), and elevated rates, slow digestive system, including constipation, and trouble swallowing, freezing episodes, etc. and have not once gotten a referral, to another specialist, or practical living physical therapist, to help me live better, with PD. Perhaps it’s because of my age, here in the USA. It seems like the approach to elderly patients, age 75 and above is more palliative, or monitoring, than actual physically helping patients dealing with the practical aspects of living with PD!
Agree that a visit once every 6 months without any telephone consultations in between is grossly inadequate for getting meds right. Patient really has no choice but to make adjustments on their own, to the extent possible.
yes!! I 100% agree with this. It is frustrating that patients only get a visit every 6 months, when they are dealing with new symptoms, medication issues, and other obstacles on their own during the months in between. It’s a good thing for that there’s a community like this here where everyone can help out one another!!
Hi. I was diagnosed with Pd by 4 different neurologists, over a period of several years.
I was put onto an MAO-b Inhibitor, and was on it for more than 2 years. Then I started to do regular, organized, Fast Walking, every two days. Within two years my Pd symptoms disappeared and remained Absent until I stopped the fast walking, due to other health reasons.
My Pd slowly came back again, and I had to decide what was more important to me and went back to doing thr Fast walking. I am now 88 years old and have been doing the fast walking since 1994. It works and it has worked for many others, who were prepared to put in the effort.
We all have choices, either we do Fast Walking, or we take non-effective medicatiuon!
I’ve read your book!! My dad was able to delay taking c/l from 2018-2021 due to walking and fast walking. However, when he started c/l and the medication interfered with his mobility he stopped going walking for a bit. By taking a break from the c/l he is backing to walking now and enjoys it. However, he still feels like he needs a medication to aid his balance, tremors, and energy levels. Also, did selegiline alleviate your symptoms when you were on it, such as decreasing the tremors ?
Hi. Because no medication reverses the symptoms of Pd, the only way to do so is through Fast Walking, which you know. I cannot honestly remember what Selegiline did to help me.
I have had to concentrate on what I am doing, in order to overcome any balance problems. It is a habit I had to develop. I have never been able to fully overcome the tremors. I find if I go slowly at writing properly, it works. Otherwise, I am so used to the tremor and everybody I know is used to seeing me shake. You can't win them all. I live a normal life, albeit, not a perfect one, but I don't let it get me down.
I used to walk as fast as I could for 1 hour, every second day, up until three years ago, aged 84.
Then I had several other health problems involving surgery and other treatments, which prevented me from doing my regular walking. I have been walking for three kilometres these last two months and will increase it again to four kilometres tomorrow. I aim to get back up to eight kilometres, although I am now 88 years old and am having all sorts of other problems. If I had not been doing the walking, I would not j=have still been here.
yes…yes. HwP had the same thing and he also developed a body odor and I finally realized it was from raking c/l… he was on it for 6 months and did not work after Dr said to increase dose..his smell only got worse and symptoms were increased. We have since stopped the c/l. It was toxic to his body. We have started B1 therapy and he’s a different person. By the way prior to meds, he had all the PD symptoms for 3 years before being diagnosed and he never had a smell. Have you see the video “no silver bullet”? PD patients are not deficient in dopamine.. adding c/l puts more dopamine in the neurons where it should not be.
It might be the medication which causes an odor, but it might also be the Parkinson's itself. This is one of many stories about Joy Milne, the woman who first discovered that PwP have a unique and unpleasant odor.
A Woman Who Can Smell Parkinson's Is Inspiring New Research Into Diagnosis : Shots - Health News npr.org/sections/health-sho...
hwP had NO smell before meds. Adding c/l put more dopamine in a brain that already had excess..ie. Meds toxic and body pushing out with the smell. PD patients are not dopamine deficient…watch the YouTube video. “No silver bullet”
there are two different odours. The PD one is a musty damp dirty towel greasy fatty smell, the drug smell is an acidic chemical smell. I can smell them both.
My dad is on b1 but we are still trying to figure out what dose works best. He started on 1g and is currently on 2g a day. How much does your husband take? And what benefits has he experienced?
I am tremor dominant and I find although sinemet does control my tremor, I do get periods (usually 2-3 hours after taking a pill) that I am stiff and my gait is off. If I wait about an hour or so, I don't have those symptoms. At my last appt with my MD specialist... she recommended taking a 4th sinemet... instead I decreased my meds and feel better.
I'm stiff dominant...my stiffness and severe cramping happen a few hours after a low dose Rytary...I tried waiting it out and even taking less...but it only got more severe. I added more by taking a full tablet of 25/100 c/l with the Rytary and within 20 minutes the pain and stiffness were gone. Such different experiences.
My dads body can tolerate one half of 25/100 c/l tablet without any pain and stiffness but once he takes a full one the issue arises. And when his doctor upped the dose it became more severe and gave him dyskinesia. It’s interesting how differently everyone reacts to medication, we have a family friend who was dx a month before my dad 4 years ago and takes the same medication as my dad with no issues at all.
I wonder is there's such a thing as PD-lite. I have a tremor and take Rytary. When it wears off I get a lack of convergence, that is I see double images. But no bradykinesia, no stiffness or walking problems, no balance problems, no "off" periods. I have low back pain but have had that for decades. A few years ago I was diagnosed with APS, then diagnosed with MS and finally diagnosed with PD. I no longer take meds for APS or MS, just the PD. wonder if stopping the Rytary could be worthwhile. I can live with the double vision; I just keep one eye closed when driving.
I think possibly it is just different genetic defects. Hubby has genes that mean his liver doesn’t clear some drugs fast, and he has super fast dopamine beta hydroxylase which means he breaks down the dopamine meds too fast so the spike too high too early then run out quickly. At least that’s what I think it means and it seems to be what happens.
Other people might have a normal one of these so medication works as it is supposed to. Anyway that’s my working theory for now.
did you ever try plain old sinemet or madopar ? I guess you could try the tablet form of one of these then you can reduce or increase it to the dose that works best by cutting it.
Yes! I came off my Selegiline when I g=found that Fast Walking had reversed my symptoms. Every time I stopped the Fast Walking the symptoms returnd, so, I have been doing fast walking since 1994
YOU SHOULD BE SEEING A MOVEMENT DISORDER SPECIALIST. My partners neurologist was very nice , but did not offer the depth of knowledge that our MDS did. He is doing better today than he was 3 years ago- with the help of this specialist.
There are many “cocktails” that can address your concerns.” Good luck!
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Is this a side effect of c/l or what?
