Madopar not working. Have I really got PD?

[PWal]

Hi All

I was diagnosed with Idiopathic PD in Feb ‘18 and put on a course of Madopar which, in varying doses, I’ve been on since. The Madopar simply doesn’t seem to have any effect and I can genuinely not make any distinction between how I feel after having taken a dose and (for example) 1st thing in the morning when it’s perhaps 12 hours since my last one. I experience nothing at all in the way of “on-off” periods that many other people report.

I have many of the normal symptoms of PD including tremor, bradykinesea, rigidity, micrographia, etc and recently my speech has become more effected. I also get a lot of back ache and when I walk it’s like my centre of gravity has shifted uncontrollably forward, giving me a very awkward and uncomfortable gait.

I’ve been told that Madopar is pretty much the “gold standard” drug treatment for PD and also that the effectiveness of the treatment is one of the ways diagnosis is confirmed.

Since the drug doesn’t seem to be helping me very much at all, (and I’ve been on it 18months now) I’m becoming concerned that it may not be PD but one of the “PD Plus” ailments. The list of symptoms for MSA seem a good match for my condition and I’m wondering I might have that instead?

Anyone have any comments or similar to share?

Many thanks

Paul (61 y/o, UK)

[Xenos]

Hi Paul, I'm pretty much in the same situation.

The diagnosis of PD has never been questioned in 3 years by different neurologists, mainly I think because of a positive DAtScan.

Maybe you could ask for one ?

[PWal in reply to Xenos]

Yes I’m hoping that my neurologist will offer a DaT scan next time I see him in September. I’m not sure how freely available they are in the UK though. I did have an MRI scan about 18months ago which just came back with the results “within normal limits”, whatever that means. I’m not sure that MRI can detect PD though

[Xenos in reply to PWal]

I heard that people in UK can have medical care in France, your Social Security paying the french hospital. Is there a possibility like that one for you ? I got my appointment within a month in Paris, had an MRI and DaTscan the same day.

MRI cannot detect PD but can detect many other ailments. I got the same line on mine : "within normal limits".

[gingerj in reply to PWal]

I had a day scan on NHS a short time after MRI. Ask your neurologist

[PWal in reply to gingerj]

Many thanks- will do 👍

[Dap1948]

Don't expect huge differences between before meds and after meds so soon since diagnosis when dosage is small. I'm in my tenth year since diagnosis and happily get up, shower, write to do lists, make breakfast etc before meds and all 15 hours since my last madopar.

[PWal in reply to Dap1948]

Many thanks for your reply Dap1948. Surely though there should be at least some sense that the meds are doing something for symptomatic relief? It feels to me like they’re doing nothing positive at all, yet giving side effect like postural hypotension, etc.

Feeling rather disillusioned !

[Hidden in reply to PWal]

I would mention PD+ to your neuro given that levodopa is not having any effect. Is your neuro a movement disorder specialist? If not then you need to find one. The National Hospital for Neurology and Neurosurgery is a centre of excellence if you can get to London. I have a rare form of PD and travel there from Lincolnshire.

[PWal in reply to Hidden]

Many thanks. Yes I intend to speak to my neurologist about PD+ when I next see him in September. I’m hoping to persuade him to send me for a DaT scan to help get a more concrete diagnosis 😊

[frankaspergilus in reply to Hidden]

Hi Osidge.

This is going back a bit but I just read your reply on this thread and see that you say you have a rare form of PD.

As I can't get a diagnosis but have many PD symptoms and my brother has been diagnosed with PD and we share 95% of the same symptoms, I'm wondering if I may possibly have a different form too.

Would you mind if I asked which form you have and how it was diagnosed? It may be useful for me to know as even my brother who has had PD for years had a negative Datscan and I've had two negative Datscans. Might be a familial variety.

Thank you in advance.

Frank

[Hidden in reply to frankaspergilus]

Hi Frank. I have PD - SWEDD. I was diagnosed with tremor dominant PD. Apart from some tremor, occasionally, I lost my right arm swing and have REM-Sleep Behaviour Disorder. I also had some bradykinesia. When I had my DAT Scan, it showed no evidence of loss of dopamine - hence Scans Without Evidence of Dopamine Deficiency. The other feature is that my PD has not progressed in 12 years. My Father had PD and his sister had PD. I take Sastravi 50 three times a day.

[frankaspergilus in reply to Hidden]

Hi again and thanks for your reply.

I've had negative Datscans as I said but after the last one the neurologists report mentioned SWEDD. It was in French (I'm English but live in France) but it seemed to be more of a question posed by the neuro rather than a straight diagnosis, which I realise is probably the best he could have done.

I'm thinking of asking for DNA testing which I know can detect some of the forms of Parkinson's. It might help to rule out those forms at least. Or it might confirm that there is indeed a problem that I've been telling my doctors about for almost 10 years.

I know I'm at the end of my tolerance for these problems which I never been medicated for.

Although I could see in his later years that something was wrong with my father, it was only when my brother began to suffer from PD symptoms that I realised that my father very likely had it too but in a milder form.

It's odd but I have read that people who smoke are much less likely to get PD than those who don't. My father smoked all of his life but my brother and myself never did. Perhaps that's why my father's symptoms were less and why he had them much later in life than my brother and, if it is PD, myself. He may of had some of the protective effects that some people think smoking has.

Thanks again for your help.

Frank

[Astra7 in reply to PWal]

Often I can feel the madapor swoop through me relaxing muscles as it goes, and I can literally watch my toes uncurl. When I need it my teeth start to ache and I feel like I can’t draw a full breath.

It does almost nothing though if I have eaten protein or a lot of other food. Are you trying it in an empty stomach?

Hope you find an answer.

[PWal in reply to Astra7]

Hi Astra7,

Yes I’ve tried all kinds of different regimes - before, after, with/without food. Nothing seems to work, that’s why I’m wondering if I’ve got something else like Multiple System Atrophy instead

[condor39]

What dose of Madopar have you been taking?

[PWal in reply to condor39]

I’m currently on 3 x 187.5MG per day + 1 x 1mg Rasagiline. I was taking 3 x 250mg at one stage but my neurologist reduced my dose due to dizzy spells attributed to low blood pressure

[condor39 in reply to PWal]

I am confused. Madopar is not available in Canada, the equivalent is Prolopa, but it comes in capsules of 25/100 or 50/200.

I got no effect from the 50/100, but the movement disorder specialist said that the 50/200 do not adsorb well, so I started on low dose 25/100 , capsules increasing very slowly, and got a dramatic improvement taking three, four times a day. The equivalent of 1200 mg of Levodopa.

I don’t seem to get “off” times which others describe, but vey mild dyskinesia, when my right leg seems to want to move on its own.

I take no supplements, no vitamins, no special diet, and no particular exercise

[gwendolinej]

No it’s not the “ be all and end all” drug. It doesn’t work for many people. Madapar (levodopa) didn’t seem to be working at all for my husband, Alan, back in 2012. He was diagnosed with Lewy Body Dementia initially. It was only when he went on to the Neupro patch that he improved dramatically! Then rediagnosed with PD. He has had his Madapar affect tested by wearing a watch which measures its affect as soon as he takes tablet. It measures for a week, then neurologist gets a report on its effectiveness. Madapar works, but only marginally, and not noticeably.

There was an interesting item on this site on June22 headed” More pieces of the puzzle about getting a more stable supply of levodopa to the brain”. After reading it, I’ve added Grapefruit juice to Alan’s diet as of today.

[PWal in reply to gwendolinej]

Very interesting Gwendoline’s. Thanks very much for your reply. The watch sounds intriguing. What does it actually measure?

[PWal in reply to PWal]

Hi Gwendolinej.

I located and read the article on grapefruit juice that you mentioned and I must say it makes compelling reading. I wonder if my inability to see positive results from Madopar is indeed down to this enzyme inhibiting the metabolisation of the levodopa? Got to be worth a try 😊. I’d be very interested to hear how your hubby gets on with grapefruit juice.

Best wishes

Paul

[gwendolinej in reply to PWal]

It actually tells you if it's working and how well. It ends up on a graph. Alan's results show that as soon as he takes it his levels go up, but not as high as they should, and they then drop fairly quickly, whereas it should last much longer. Alan will be on the Gf juice for 8 days before he goes back to the Movement Disorder Clinic, so I'm hoping I see some change before then.

Alan was put on Xadago recently. It's supposed to work with the Madapar. It is a trial drug (4th trial). It did work to an extent very quickly, but didn't keep going. My theory is that it won't because the Madapar isn't doing its job. The dose of Madapar was upped considerably as well. What a roller coaster ride we are on. I'll let you know the results when I get them.

By the way, Alan doesn't have " your garden variety PD" ( neurologist's description). He has no tremors, has the Parkinsons Mask, shuffle ,balance and most of all lethargy at the moment.

Cheers

gwendolinej

[sharoncrayn]

Madopar isn't the "gold standard" for treating PD. No such thing EXISTS, because it doesn't exist.

Madopar is different than Sinemet (probably the most common prescription for PD, at least in the US). It contains the drug called: benserazide (DL-2'-(2,3,4-trihydroxybenzyl) serine hydrazide), which is similar to carbidopa contained in Sinemet but NOT the same. The "ratios" within each drug vary substantially. These 2 drugs have undergone comparative clinical trials since the mid- late 1970s with Sinemet generally showing more side effects but equal effectiveness.

More to the point, have your neurologist (I assume you are seeing one) run your current UPDRS levels against your baseline levels when he first saw you (THE LONGER THE TIME SPAN THE BETTER). The deviation should tell you and your doctor quite a bit.

[PWal in reply to sharoncrayn]

Hi Sharon

No, my UPDRS level has never been measured or even mentioned. My neurologist made his diagnosis by simple observation and virtually nothing in the way of really “scientific” tests. As it happens, I’ve tried both Madopar and Sinemet and both drugs yielded pretty much the same results - no discernible difference.

[gwendolinej]

Sorry I haven’t replied re what the watch does. All I know is that the graph shows how well the drug works. When he takes the Madapar, it shows the effect (how well it works) and the length of time it works for before it starts to drop. Alan’s chart showed it never got to the optimum level and it didn’t last long before it started to drop. When he was only on Madapar, I’d have said it had no effect, as there was no improvement in his condition. It was only after he went on the Neupro patch that we saw an improvement. (I’m just speaking from my observations).

[PWal in reply to gwendolinej]

Many thanks Gwendolinej.

Very interesting 👍

[gwendolinej]

Here’s something else I thought of. The neurologist hasn’t mentioned it, but the pharmacist we are now using has: take Madapar on an empty stomach, half an hour before a meal or 1 hr after. I rang Roche today ( the company here in Australia that supplies the drug). They confirmed that this is the best time to take Madapar, but some people feel nauseous when they first start taking it, so need to take it with food. We are off to the Movement Disorder Clinic tomorrow. If we learn anything more, I’ll let you know.

[PWal in reply to gwendolinej]

Thanks for that. Yes I already take my Madopar before food for that reason.

Good luck tomorrow 😊👍

Cheers Paul

[gwendolinej]

Hi again Paul, we went to the Movement Disorder Clinic today. We did learn that you need to make sure you are not constipated. There is a 30% reduction in Madapar’s effectiveness if you are. It’s all got to do with the gut. (We are on it). The gut seems to get mentioned a lot in research these days. Funny that alternative medicine, including Chinese Medicine, has been saying that for yonks. Cheers Gwendoline

[PWal in reply to gwendolinej]

Hi Gwendoline

Many thanks for your feedback. Interesting stuff about constipation and gut, etc. I agree there seems to be quite some emphasis on the digestive tract at the moment 😊

Take care

Cheers Paul