PD Meds Not Working

[PeggyDay]

Anyone out there been unable to tolerate PD meds? I was diagnosed in 2019 and my MDS prescribed the standard carb/levodopa and it made my symptoms worse. So I started taking a variety of supplements and that was working until recently when my symptoms got worse. My MDS put me on Sinemet and my symptoms got worse. She put me on Neupro and my symptoms got worse. I say worse as in severe freezing, off balance, weakness in my legs. As of today I need to use a walker and it is slow going. This all escalated within a two-month period. Any ideas?

[Bolt_Upright]

I am far from an expert but it sounds like every PD medication you were given made your symptoms worse. Maybe you need a second opinion on the diagnosis?

[qazwsx11]

One of the telltale signs that confirms a Parkinson's diagnosis is the effectiveness of carbidopa/levodopa. Most of the time, it works great, but sometimes it can make people feel bad. I have never heard of a proper diagnosis where Sinemet did not work. So, as the other user suggests, you should get a second opinion or ask for imaging to confirm the diagnosis.

Another reason why Sinemet may not work is if you take it with food, especially protein. You should space the intake of Sinemet 30-45 minutes away from meals and also reduce protein intake to a minimum during the day, having most of it in the evening.

If supplements help, have you tried viome.com? They create personal supplements, which have helped me quite a bit.

[Bonzu]

I am the same. Was diagnosed 9 years ago. Pramipexole was a disaster. Madopar never worked . The first 6 years I only had right hand tremor. Things got worse during covid time. I never got covid. Now I have stiffness , pain in my arm and right shoulder, bad hand tremors and worst of all mouth tremors. Unfortunately B1 made my tremors worse. I have the classic 4 symptoms of Parkinson yet levodopa -madopar- never worked. The hospital gave me dispensable madopar but this also did not work. I think it is a myth if levodopa does not work you don’t have Parkinson. I found mucuna powder the best for my symptoms but it is messy to take , difficult to dosage, caused nausea and unregulated. Stopped taking it as it was leaving a black stain which was worrisome. Back to square one.

[JCRO in reply to Bonzu]

Same as me. C/L makes no discernible difference. Dx from symptoms by one of the leading PD experts in London and a DAT Scan 37 months ago. Hopefully going slow.

[park_bear in reply to Bonzu]

>" it is a myth if levodopa does not work you don’t have Parkinson. I found mucuna powder the best for my symptoms"

The active ingredient in mucuna is ... levodopa

[Bonzu in reply to park_bear]

yeah I know. It only worked a little bit for a couple of days. For some reason the madopar does not get to my brain. There is a lot they don’t know yet.

[eschneid in reply to Bonzu]

Bonzu. ....More details on black stain when you can, thanks.

[Marcia123]

have they ruled out Lyme disease?

[TL500]

I also think like others. Maybe seek second opinion on diagnosis.

[20fatcats]

I would get a second opinion and look for other reasons for your symptom's . all the best. this must be very challenging to deal with.

[billPD]

i was diagnosed 2018 with Parkinsonism. Prescribe sinemet. 6 months ago it stopped working. Rediagnosed with Primary lateral sclerosis

[daughter-Advocate in reply to billPD]

were you rediagnosed by the same provider or did you go to a different one?

[Router_]

second opinion - lack of response + parkinsonism could point towards atypical form of parkinson. Red flags to support would by early dysautonmia (specifically urinary, sexual dysfunction, blood pressure drops upon standing) or hyperreflexia

[bigl62]

You may have abortion challenges. Get checked and treated for H-pylori if you have it. C/L started working for me after the H-pylori was gone.

[LAJ12345]

hi yes, my husband has not had any reduction of his worst symptoms with madopar which is lack of dexterity in his hand and shoulder stiffness, but of course once you are on it you cannot suddenly stop taking it.

What dose. are you on? It could be that it is way too high for you. Doctors all seem to think more is better but in his case a very small dose makes him feel the best even if it doesn’t cure symptoms.

He takes 4. 3/4 x 50/12.5 madopar tablet , some with mucuna pruriens NOW capsule (60mg) and 1/2 entacapone tablet.

6.30….. 1/4 madopar…..1MP……. 1/2 entacapone

8.00…. 1 madopar

10.30 …..1 madopar……1MP…….. 1/2 entacapone

2.00…..1 madopar……..1MP,……. 1/2 entacapone

5.00……1 madopar…... 1/2 entacapone

8.30…….1 madopar

Entacapone is a COMT inhibitor and stops the levodopa breaking down as fast. So dose peak is smoothed a bit.

Note the majority of the levodopa is taken in the middle of the day when the natural levodopa is at a low. Less is needed at least by him at night.

[blogger_7]

Hi Peggy I had the brain scan which verified I have Parkinsons.. but the Levodopa made me projectile vomit...and I couldn't see any improvement. But I don't have the resting tremmors.. I had action tremmors... which means if I was holding a fork.. it would bounce, but as soon as my muscles were relaxed, the tremmors would stop. I hadn't thought about it, but I haven't had to chase my fork at all, for quite a while. I'm going to post a link on here to my blog, if you'd like to see what is working for me. silverliningsandparkinsons.... If the link doesn't work cut & paste what follows into url ad close the space silverliningsandparkinson s.home.blog/transparency/

Sue