Hi anyone taking sinemet and/or baclofen,
Has it helped?
Any side affects?
Thanks in advance
Love and hugs
Helen xxx
Sine met/baclofen: Hi anyone taking sinemet... - PSP Association
Sine met/baclofen
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Helen119
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On sinemet. Worst side effect nausea. Don't know if this applies to you but I was able to reduce dose required by taking melatonin replacement drug by half. Also started low protein diet which has helped but can be difficult if like meat or ready meals. Otherwise sinemet much better than madopar for side effects.
Warning for all dopamine drugs; won't work if have infection. Can result in bradylkenetic episodes.
Hi Helen
My husband has been on Sinemet plus for 5 years and has never had any obvious side effects. He always maintained it did nothing so couple of years ago he insisted on weaning himself off it and he became totally rigid and kept ‘running backwards’ reintroduced the sinemet and these symptoms reduced considerably
I am aware that not everyone with PSP responds to the drugs more commonly used for Parkinson’s but some do.
Love Tippy
so glad to hear that the sinemet helped with rigidity. I actually already had a call into the neurologist to see about reintroducing carba dopa leva dopa because my husband is so rigid that it is nearly impossible to to seat him. I have to press so hard on his thigh to get him to bend that I know it must hurt him, it definitely hurts me.
If anyone knows a "trigger point" to press in order to sit a person on a chair, I'd love to try it.
The rigidity has gotten worse over the past several months. He's like a board. This is the latest in his terrible decline.
betsy
My husband takes sinement, and has done since he was diagnosed, we both belive it works for him , and that's enough for us , some times its all in the mind..Brenda. ..
Whether in the mind (pacebo), or not, is not important. What is important is that it works.
Most of the miracles related in the Gospels were (according to Jesus) because the recipient had FAITH that they were going to get better, the Jesus was going to heal them. FAITH BEING THE KEY OPERATIVE.
When I thought my son, Jeff, had PD I read THE BRAINS WAY OF HEALING by Norman Doidge, M.D. I loved the entire book but pursuant to this topic was chapter 1, especially pg 25-?
When Jeff was in the beginning of his symptoms, first three years, I had plenty of time to research, but after his third year when told he had PSP .......the symptoms demands did NOT allow me time.
Reading this site takes lots of time. I realize as a past caretaker, time is LIMITED.
The mind is powerful.
Thank you everyone, Colin has just come out of the hospice where he has been for nearly 3 weeks, they have started the baclofen already and I’m not sure that I can see any change, but have now been given sinemet to try along side it, I will give it to him tomorrow and see what happens.
Love and hugs
Helen xxx
Hi helen my husband is on co coreladopa a form of siminet and has done fine with it he has taken it a couple of years now, he gets a bit dizzy but don't know if that's psp or drugs .
4 years ago Ian was put on Sinemet. Last year I accidentally took a lower dosage on an extended holiday and he became more rigid over just a few days. When he returned to the proper dose, he improved considerably.
Long may it last!
My hubby who had CBD took sinamet initially. He was nauseous and very dizzy. He explained that he felt like he was in a tombola machine! He was very loath to take a different drug when prescribed madopar. That had fewer effects, mostly a little nausea, but he did not like it. Not sure how else it affected him but it did not improve his stiffness or limping gait.
His last clear decision given to the doctor was that he did not want to take it any more and he refused!
Hugs
Jen xxx
I took sinamet for a few months about 4 years ago but found it no use at all just the side effects , now i take nothing and seem fine, Although i am falling more nowadays just have this feeling that doctors tend to over-medicate their patients.
You dont get the rigidity of limb Stephen? Seems thats the symptom people are helped by the most.?
no i have no rigidity but there again i am atypical.
My husband has taken carbidopa-levodopa with amantadine ( to counteract side effects) for over 6 years. His neurologist prescribes it to her patients to prevent stiffness. Since he is still very limber, I guess it is working. The only side effect is if he takes too much amantadine and he will hallucinate. He takes no other medications for PSP.
I'm on both with no side effects.
My husband takes backplane for cramping and it does help with that.
When my husband first started on the sinemet we were very hopeful. He was on it for several months and we noticed no difference , until we took him off. I have questioned the drugs merits several times and weaned him off, only to end up starting the drug up again.
His rigidity definitely is worse without his small dose of Sinemet. I have also noticed problems when I increase the dose. It’s kind of a trial and error balancing act.
Hi Helen
Hope all is going smoothly with Colin at home and the introduction of Baclofen and Sinemet. Have been thinking of you
Take care
Love Tippy
Thank you Tippy
He’s taking the sinimet and baclofen now, but haven’t seen any change yet, Colin is completely bed bound now and struggles to even move his arms.
I’m sitting waiting for him to do his first poo since being home, to see how I manage cleaning him up, think it will be hard but do able, as he can keep his legs bent up for long and I can’t roll him on my own.
Case of wait and see hopefully I will manage and all will be well.
Love and hugs xxx
Fingers crossed all goes ‘smoothly’
Really tough times for you both. Hope you have some carer input and Hospice support
Sending a big hug
Love Tippy
Update to my earlier post: The carbadopa levadopa WORKED. The SEVERE rigidity has decreased. He sits more easily without my having to push his upper thigh. He even noticed it himself. Oddly, he also made a greater effort to speak. just now he is taking Carbadopa 25/Levodopa 100mg 3X per day. I may increase it to see if there is any benefit. Today is day three.
When I called the neurologist, he said, "It couldn't hurt." Previously, C. had no benefit,
Hi Helen119!
There are several types of PSP (PSP-RS, PSP-P, PSP-CBE, etc.). Acording with my information only some patients, type PSP-P (PSP-Parkinsonism) and only in the early stages, improve their bradykinesia and rigidity by taking Carbidopa/Levadopa/Sinemet. However if you didn't feel any difference then maybe it was not working for you.
Regards.
Luis
