Get off Sinemet?

[Kat343]

My husband does not have tremors, but definitely has drooling, is stooped, is stiff and slow, at times has fast gait and/ or severe hesitation with moving, all classic PD symptoms as well as has some cognitive decline. Diagnosed with atypical PD in May 2022. He is doing many wonderful alternative therapies and success seems to last only 24 to 48 hours. At this point, he is on 25/100 1.5 pills 4 to 5 times a day, since May of 2022. His doc upped his dose from 1 pill to 1.5 this summer. However, we are seeing no difference in symptoms. Occasionally he misses a dose and we cannot tell any difference. I also have read that Sinemet can cause worsening symptoms in some people.

Here is my question as my search here and elsewhere has not yielded any results. We are considering trying to wean him off slowly and see how he does with that. Since his neuro doc is skeptical and downplays all alternative treatments, we really don't care to involve him in this decision. Questions:

1) Anyone know a more correct way to wean him off? We are considering taking 1/2 pill off the schedule every 2 or 3 days - maybe get off completely within 3 weeks or so. Maybe we should do it even slower?

2) Has anyone weaned themselves off and what was it like (for good or bad)?

Thank you, I cannot express my gratitude enough for the people on this forum, you have been my source of info and support for over a year now.

[kksim]

now that he is on sinemet, to wean off completely would be high risk; I did & got dyskinesia which resulted in doing a DBS implant to regulate dyskinesia. Best to discuss reduction of medication with Neuro first. Rgds Sim

[Camomi]

You are describing my husband! Only he does't take any medication so far, he only takes B1 and we are experimenting with that. I got him off high blood pressure medication by very slowly reducing the two pills he used. It took us six months and his blood pressure is better than ever. I would like to help you, but I know nothing about the medication your husband uses. I can find online what the advice is to neurologist. I read about the build-up schedule for Sinemet and it says that if you need to reduce, you have to reduce in the same way als the build-up was. Maybe thiss will help, now that your neurologist doesn't want to cooperate.

[Kat343 in reply to Camomi]

Thank you for your reply, I was not notified by HU I had any replies! Good for you. We are doing a bunch of alternative therapies on him, but most are expensive. One thing I think may be helping, but may be too early to tell, is low dose lithium. There is a book called The Miracle of Lithium you should read. I got one for our chelation doc who now recommends it for many of his pts - look up the on HU how others are taking it. I started him on 5 mg a day for about 6 weeks, and slowly upped it to now 30 mg, not all at once (biggest dose before bedtime) and will work him up to 45 mg as per the study that you will find when you research here on the forum. Good luck to you and God bless us all!

[Camomi in reply to Kat343]

Thanks for your suggestion to try lithium. But what I read about it scares me. We try to live as naturally as possible and medications or whatever is recommended all have side effects and Parkinson's may seem to worsen, while it is the medication! Our attempts with B1 are difficult enough and fortunately they are not harmful.What we also do is the keto diet with intermittent fasting. The latter is especially excellent for the body, not just for Parkinson's.

I follow everything for him but so far, since I read HU, I know that every patient reacts differently and that many people come up with solutions, but nothing really helps. The least bad thing seems to me to be a lot of exercise, B1 and IF.

But thanks again, it is a struggle for all of us!

[Kat343 in reply to Camomi]

Grateful for your reply, I will speak to him. Its just SAD that his only suggestion is all about the scrip drugs - oh well!

[Mimi828]

First off, talk to the doctor about it, there is a correct way to wean off the Sinemet, it takes time, if done too quickly or all of a sudden, it can have serious repercussions. I, also weaned down from 6 pills a day to 3 successfully under a doctors care but it took a long time.

[Kat343 in reply to Mimi828]

Good for you - its such unknown territory esp when hubby is terrible about being able to describe much of anything on changes, good days, bad days, etc. Thank you for replying