Upon reducing C/L Symptoms Got Worse!!

[Chicafromchitown]

I was on 1 25/100 3xday with 1 0.5 mirapex so I started taking b1 hdt 1 500 mg every other day, after two weeks my symptoms started to improved, I cut down c/l to half of tablet 3xday so now my symptoms are worst than ever!!! I need advice ASAP I am going on vacation this Friday I want to know should I go back to 3tabs? I tried but now I feel dizzy and unsteadily every bone in my nuckles seems like they’re popping out my foot goes outside when I’m standing up and can’t stand up from a chair without holding on to something or someone?? What did I do wrong!! Please any advice, comments would be very much appreciated. Thank you in advance 🙏🏽

[park_bear]

I would go back to my former dosage.

[Chicafromchitown in reply to park_bear]

Thank you park bear always here to help.

[Enidah]

Go back to your former dosage and then give your body a little bit a time to adjust. B1 is not a substitute for C/L.

[Chicafromchitown in reply to Enidah]

Thank you

[Millbrook]

I don’t think you can reduce any medication till you are more stable on B1 and symptoms are reduced. It takes time to find the right dose. Please coordinate with your doctor before randomly going off any meds

[Chicafromchitown in reply to Millbrook]

Thank you for your advice 🙏🏽

[ddmagee1]

I once tried to cut back on my c/l, like you did, and, yes, the symptoms came back worse. That was a foolish thing for me to do. Fortunately, I went back to the full dosage prescribed, right away. I felt unsteady and dizzy for a few hours, but within a couple days, things were back to where they were supposed to be. Believe me,I'll not do that again. So, I would think you should go back to the full dose of medicine prescribed. Actually, it's important that patients not go off medicines, on their own, like that. One should always check with their physician, before any changes in dosage of medicines, are made. Doctor's are aware of side effects, and other problems that could occur, if a patient changes dosages, of any medicine, on their own. Patients may not know of some of the problems, that one could encounter, if they change dosages of medicine, on their own accord. So, of course, my advice is to consult with your doctor, first, before you change any dosage of medicine. Also, if symptoms are bothering you, and the prescribed medicine doesn't seem to be helping as much as you think, I would advise consulting with your physician on what he could do to help you more. I hope you are doing better, now.

[Chicafromchitown in reply to ddmagee1]

Thank you 🙏🏽

believe me I learned my lesson!!

[Hidden in reply to ddmagee1]

Excellent and sane advice. Well said.

[Hidden]

I was curious if anyone thought there are side effects from decreasing the C/L??

[Chicafromchitown in reply to Hidden]

I don’t know if they’re side effects from reducing c/l but I’m feeling horrible and scared 😱 since it’s hard for me to move around it’s like my whole body is stiff. My family yelled at me cuz they said PD meds are very powerful I shouldn’t just stop taking them or reducing doses.

[Millbrook in reply to Chicafromchitown]

Hope you feel better soon. You should be ok once you take your meds. If you want to try B1 do it together with your doctor so there is someone monitoring you

[Hidden]

I believe it’s been said here before that everyone reacts differently to medication and everyone has different symptoms. My husband takes 3 25/100, 3 times a day and has had severe hallucinations for a year now. We have tried reducing his medications a few times, under his doctors advice, and his motor skills gets affected. We are in the process again, and he is at 4 1/2 a day, so far so good. He refuses to take another drug for the hallucinations. He did try but it didn’t like how it made him feel. He has tried the B1 but developed a rash and flushing each time. So, my point is, everyone is different and reduction of medication may not be for everyone. His doctor asked him how it’s going as he cannot be sure what will work. Taking your 3 pills a day seems necessary in your case. Good luck to you.

[Chicafromchitown in reply to Hidden]

Thank you and good luck to your husband too.

[jeffreyn in reply to Hidden]

Your husband's 25/100 c/l pills have been reduced from nine per day to four and a half per day. As regards motor symptoms and hallucinations, so far it is going well. Have I got that right? How long has he been on the new dose, and was the change made all at once?

Sorry for all the questions. I'm also experimenting with my 25/100 dosage at the moment.

[Hidden in reply to jeffreyn]

No, my husband was on 6 a day. He took 2- 25/100’s, 3 times a day. We reduced them by a half pill, a week at a time. They must be reduced slowly. He is currently on 4 1/2 pills a week. He takes 1 1/2 pills, 3 times a day. This is all in an attempt to get rid of hallucinations. So far, so good!!

[Hidden in reply to jeffreyn]

Sorry, when I say so far so good, I mean his mobility is still ok but still has horrible hallucinations! Hasn’t done a thing for those!!!

[bepo in reply to Hidden]

I think he should try the B1 again. I have read where the rash goes away with lower dose B1.

[Nitro53]

It’s obvious, you need to go back to your normal dosage of c/l.🙂

[Chicafromchitown in reply to Nitro53]

Thank you for your reply

[unsinkable]

Hope you are feeling better, going back to your usual dosage is a good idea.....

[Chicafromchitown in reply to unsinkable]

Thank you

[John_morris71]

I reduced my mother's dose of C/L from 8 tablets (2x4 times/day) to 4 tablets a day( 1 x 4 times/day) over a period of 6 months (slow and steady). Originally she was on 3 tablets a day, then it became 5, then 8. That is when I started to think that there was no end to the increase in dose and started reducing again slowly and now she is at 4 per day. I want to make it 3.5 per day and will probably do it over a period of 2 months, by giving her 4 tablets one day and then 3.5 tablets every other day. Of course, I have been giving her some supplements since 2 years and it has helped with her symptoms, especially constipation and may be helped reduce the dosage of C/L. So be careful while reducing dose. Below is what I have been giving. Of course now, I have added Thiamine HCL 500mg x 2 times per day and also CBD/THC 2 times a day. (Hence, planning on reducing dose of C/L from 4 to 3.5 tablets per day)

healthunlocked.com/parkinso...

[MWLE]

It took my dad months to reduce his c/l dosage. We had to drop a small dosage once every 2 weeks to a month before moving down again. C/L has been said to be very addictive and takes time. Your body has become depended on it.

[Psalm1]

Reducing anti-park.meds shd.be done extremely slow. Follow the rule of 10. Reduce by 10% every 10 weeks as tolerated. It takes time for the brain to adjust. Please read "Once Upon A Pill" . It is free. Just google it.

[Hidden]

It is extremely dangerous to reduce Carbidopa/Levodopa without the advice of the Doctor. There’s something called NMS (neuroleptic malignant syndrome) that can develop as a result and sometimes people do die as a result. The warning sign to watch out for is fever. Of course, this is in addition to the usual effects of sudden withdrawal such as extreme stiffness, increased tremors and speech issues.

[Chicafromchitown in reply to Hidden]

Thank you for your reply