In Defense of Medication : When I was... - Cure Parkinson's

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In Defense of Medication

jimcaster
jimcaster

When I was diagnosed three years ago, I was determined to do everything in my power to stay off medication for as long as possible. As we all know, there isn't any medication which slows or stops the progression of Parkinson's and long term use often leads to troubling side effects like dyskinesia. Within weeks of my diagnosis, I was delighted to learn about Dr. Costantini and high dose thiamine. I still take high doses of thiamine each day along with a number of other supplements.

But by last December, I could still hope the supplements were helping to slow the progression of PD, but I knew that they had not stopped it. Very slowly, very subtly, I was getting worse. My handwriting was worse, my gait was worse, I developed dystonia in my toes while exercising, my shoulders were painful and tight at 1 o'clock every afternoon, my wife noticed that I was often in slow motion even when I didn't realize it, and simple things like cutting my food and opening containers became more difficult.

With a combination of shame, sadness, and resignation, I went to my neurologist in December and asked for medication. I began taking Sinemet.

I know we are all different, I am VERY afraid of dyskinesia, and I have no expectation that this will last forever, BUT I want "newbies" to know that at least for me, Sinemet has been a Godsend. I am 58 years old. I no longer have the luxury of assuming I will live to be healthy at 85+ like my dad and grandparents. I may not make it to 70. I may not make it to 60! There are few guarantees in life for me, but I know this: Today and tomorrow are SIGNIFICANTLY better with Sinemet. It eliminates every symptom of Parkinson's for me without any side effects.

I am very frustrated that the "gold standard" for our treatment is virtually the same in 2021 as it was in 1971, but it is what it is. I'm encouraged by Pallidothalamic Tractotomy (PTT), stem cells, gene therapy, and even by pharmaceutical trials, but at least for now, Sinemet is the best thing I have found. I will enjoy today because tomorrow is not guaranteed. I will take my medication. Gladly.

82 Replies

Awesome Jim. I am right there with you. If I didn’t have senimet I wouldn’t be walking let alone running. I am 8 years in , going on 9 and am just know having some dyskinesia but not all the time. Mostly in the morning but that’s when I do most of my exercising so I’m already moving lol. The time when the dyskinesia and tremors bother me the most is when putting eyeliner and mascara on. 🤣🤣 (you gotta laugh)... Keep moving my friend. Karen

gaga1958
gaga1958 in reply to Kwinholt

I’ve got an appt with a “ tattoo“ company that does does tattoo eyeliner. That’s the one thing I don’t go out of the house and the one thing I can’t do lol

Kwinholt
Kwinholt in reply to gaga1958

Gaga, that’s awesome . I have friends that have had the eyeliner and lips done. I have several tattoos on my body but haven’t done the eyeliner as of yet. There’s a new thing called lash lift that actually curls your eyelashes too so you don’t need mascara. Lots of techniques that help but some can be pricy. Send pics when you get yours done. Karen

AmyLindy
AmyLindy in reply to gaga1958

&gaga1958 I love eyeliner too but I’m afraid of the dye ... it absorbs and goes... somewhere? Or. Maybe just washes off over time, but probably both! Be aware 🧚

Well said Jim!

Jim,Thank you for such honest and detailed report. Glad you found relief with Sinemet, but have a question - have you tried Mucuna?

jimcaster
jimcaster in reply to faridaro

I haven't taken mucuna. I may be mistaken, but I think mucuna has the same active ingredient as Sinemet so I don't see any particular advantage to it.

faridaro
faridaro in reply to jimcaster

You are right - both have the same active ingredient. However, if I remember correctly, some forum members were saying that Sinemet has higher chance of triggering dyskenisia than Mucuna. Hope someone will make a comment on this subject.

ion_ion
ion_ion in reply to faridaro

Some people reported of having dyskinesia by using mucuna.

faridaro
faridaro in reply to ion_ion

Yes, I recall that, but my impression was that it's not as often as with Sinemet. Here is what dr. Maldonado says about rodents' study: "after one year, major dyskenisia appeared in rats that had taken Madopar. Rodents treated with mucuna plus benserazide had some minor dyskenisia. Animals that took only mucuna ... none at all".

pubmed.ncbi.nlm.nih.gov/205...

However, I understand that rodents studies don't always translate into human results.

Despe
Despe in reply to jimcaster

We need to compromise. :) My husband takes 1/2t Sinemet+ MP. Many times for his mid-day dose takes 40% + carbidopa, as his Vanderbilt MDS doctor suggested, and either one Sinemet or 1/2 t Sinemet with MP for his evening dose.

" I think mucuna has the same active ingredient as Sinemet,,,"

It doesn't.

The active chemical substances in sinemet (levodopa-carbidopa) are different than those found within MP. Sinemet contains synthetic L-Dopa and a SMALLER amount in milligrams (in a ratio of 1:4) of carbidopa...which is a inhibitor of aromatic amino acid decarboxylation, or you might say a dopa decarboxylase inhibitor. In contrast, MP contains no synthetic L-dopa, no carbidopa and very little percentage wise of L-dopa (2-5%) with the velvet bean (or less with the fava bean) unless sold as a refined extract. Sinemet is also available in a polymer based delivery form (CR). MP as a plant powder is not formulated as controlled release product that I know of (see Cilia, 2017).

Mucuna pruriens in Parkinson disease

A double-blind, randomized, controlled, crossover study

When compared to LD+DDCI, MP-Ld (low dose) showed similar motor response with fewer dyskinesias and AEs, while MP-Hd (high dose) induced greater motor improvement at 90 and 180 minutes, longer ON duration, and fewer dyskinesias.

Sharon

Jim, exactly how I feel. Thank you.

Did it stop tremors?

I don't have any resting tremors, but my index finger trembles slightly if I attempt to point at a fixed target like numbers on a keypad. Sinemet completely eliminated that.

BlueHawaii
BlueHawaii in reply to jimcaster

It stopped my tremors for several years, but not anymore.

jimcaster
jimcaster in reply to BlueHawaii

Sorry to read this. Have you considered PTT (Pallidothalamic tractotomy) in Switzerland?

BlueHawaii
BlueHawaii in reply to jimcaster

Wow! I wouldn't know how to even get started.

jeeves19
jeeves19 in reply to BlueHawaii

Starting place is $32000!

BlueHawaii
BlueHawaii in reply to jeeves19

Ouch! Insurance pay?

jeeves19
jeeves19 in reply to BlueHawaii

‘Fraid not 😕

I am with you, Jim, Dr. MISCHLEY refers to Sinemet as more of a supplement than a drug. It’s replacing something that we need. And yes for some people it works on tremor, myself included. I don’t see any reason not to take it. And my QOL is much better for it.

ConnieD
ConnieD in reply to reedboat2

Maybe similar to insulin for diabetes. Our bodies cant produce enough dopamine.

What is your B1 dose?

jimcaster
jimcaster in reply to RoyProp

I started at 3 grams per day. With Dr. Costantini's guidance and approval, I eventually settled at 1.5 grams. Three 500 mg tablets. I have read plenty about people trying to make adjustments to find their ideal dose and I have made many adjustments to mine, but 1.5 grams is best for me.

Oceanwind
Oceanwind in reply to jimcaster

You are my twin!

I share your thoughts Jim and anyway future dyskinesias are not a mathematical rule. What is your daily dose of Sinemet? Thanks

jimcaster
jimcaster in reply to Fed1000

It depends a little bit on my schedule, but I usually take two 25/100 pills around 8:30 a.m. and two around 3:00 p.m. If we have evening plans (which is extremely rare with covid), I will sometimes take two pills around 8:00 am, 1:00 p.m. and 6:00 p.m.

Fed1000
Fed1000 in reply to jimcaster

Thanks, how long have you been taking 400/600 mg. of Sinemet?

jimcaster
jimcaster in reply to Fed1000

Approximately one month. I started at 150 per day (1/2 pill 3 times daily) for a week, upped it to 1 pill 3 times daily for a week, updated to 1.5 pills 3 times a day for a week. With my neurologist's blessing, I increased to 2 pills per dose, but actually reduced daily intake by taking it just twice (instead of 1.5 3 times). 2 pills works a little better than 1.5 for typing, writing, and preventing toe curling while exercising.

Thanks, Jim, for your detailed post. Would that work the same as CR (50/200)?

My husband has just had his Madopar (25/100) increased to 4 times daily, 7.30 am, 10.30 am, 1.30 pm and 5 pm. It wouldn’t matter so much but he feels horrible while waiting for it to kick in, 4 times daily now in lieu of 3.

We’ve noticed when other people take their meds at our support group meetings, they all seem fine and don’t go through this feeling. It’s hard for him to explain the feeling but it effects his eyes and head and he just sits there with his head in his hands waiting for the feeling to pass.

I was just wondering whether the CR would be better, less times he would take it. Think I’ll follow up with the neuro.

Yes, please follow up with your neurologist. Best wishes to your husband! He's fortunate to have you. 😊

IMO there is no reason not to take it. I now get dyskinesia but I have learned how to manage it and many PwPs escape it for a long time. Laurie Mischley recommends high DHA fish oil as a supplement and says that in her clinical experience dyskinesia is not a problem, maybe for that reason. I have no experience of dystonia but I keep up with magnesium and B vitamins and work out consistently. Best Kevin

jimcaster
jimcaster in reply to Kevin51

Thanks, Kevin. How long ago were you diagnosed, how long ago did you start medication, and what is your daily dose?

Kevin51
Kevin51 in reply to jimcaster

diagnosed 2013; started meds after surgery dealing with Afib around 3 yrs ago. So going meds free for 4/5 yrs did not save me from dyskinesia! I can only tolerate up to 300mg of Sinemet CR daily but that does help symptoms.

Hikoi
Hikoi in reply to Kevin51

Just a comment Kevin, I notice I get dyskenesia with Sinemet CR but much less with Sinemet IR. Dont know tyhe reason for that but it has become particularly noticable lately.

Levod
Levod in reply to Hikoi

Hi Hikoi,

Dyskinesia can occur when your levodopa level is too high (i.e., above the dyskinesia threshold) (i.e., "peak-dose" dyskinesia) and when too low (ie, below the therapeutic threshold) (ie, "biphasic dyskinesia)".

BTW, the peak-dose type is much more common that the biphasic type.

This biphasic dyskinesia occurs when you are "going on" and when you are "wearing off".

The "wearing off" type of biphasic dyskinesia is usually more bothersome than the "going on" type.

Since c/l CR has a greater half-life than c/l IR, it decays more slowly. This means you will spend more time wearing off below the therapeutic threshold (and above zero). This suggests that "wearing off" dyskinesia will be worse when taking c/l CR (vs when taking c/l IR).

Perhaps this is what you have experienced?

Note that I also experience wearing off dystonia.

Hikoi
Hikoi in reply to Levod

Thanks Levod, now i will have to think on that for a while! Do you have any references oor links I can read?

Levod
Levod in reply to Hikoi

The best reference for PWP is the Ahlskog book:

"The New Parkinson's Disease Treatment Book: Partnering with Your Doctor To Get the Most from Your Medications"

amazon.com/New-Parkinsons-D...

Kevin51
Kevin51 in reply to Hikoi

I tried going off IR first and found that reduced my dyskinesia a little so I am the other way round - but thanks for the comment. Stopping LD completely leaves me dyskinesia free but that is not practical for me. Laurie Mischley recommends high DHA fish oil to combat dyskinesia. There is some scientific evidence for that. The belching put me off :-) but I plan to take it up again soon.

Hikoi
Hikoi in reply to Kevin51

Thanks Kevin, interesting about the fish oil

Thanks Jim! This is a strong message, that all newly diagnosed should hear!

I take 1/3 of my already lite prescription of Rytary in the morning and the rest of the day mucuna. Why? Because the toe curling and groin pain is less. No matter what I take I’ll have the hand tremor. Exercise rules meds.

Levod
Levod in reply to parkylot

"Exercise rules meds." - I think this is probably not true for most PWP.

I can't exercise without meds.

parkylot
parkylot in reply to Levod

I agree with you. To be clear, I exercise in the morning after I take meds. Meds rule exercise. After the benefits of

exercise, I can maintain with Mucuna.

I too tried to stay off medication. I get the sadness and resignation with which you agreed to a sinemet prescription, but no shame in that. I too am a big follower of Dr. Mischley and agree with her assessment that you need dopamine to exercise and you need to exercise to slow progression.

I am almost 9 years into my diagnosis; hard to believe. Definitely notice changes/progression, more off periods and wearing off mid-dose. Some dyskinesia, at times. It's not awful but for me, annoying and unpredictable. Worse if I am sitting still so often I just get up and move. I've tried to keep my dosages as low as I can, yet be effective. Harder for me to manage is the unreliability and unpredictability of meds--sometimes they are perfect, sometimes don't kick in enough, sometimes too much--without anything I can find I've done differently.

Likewise, 2 years ago Sinemet made me feel that my left leg and left arm were reconnected to my body. It's not perfect but for the present is working well. Hopefully this will continue for as long as possible.

AmyLindy
AmyLindy in reply to Dobro52

@Dobro52 same (& great analogy/ description)!

My experience was similar. Enjoy the present...

" With a combination of shame sadness and resignation"

I can identify with that but why shame. Why do we feel like that ????

jimcaster
jimcaster in reply to DEAT

In my case, I think I have a lingering sense of shame that maybe I am responsible for my disease. Maybe I should have exercised more, eaten better, been less stressed, etc., etc. Then, after diagnosis, I naively thought maybe I could remain healthy without medication if only I found some magical supplement, ate better, exercised more, or was less stressed...and I failed again. I hope all of this was just due to bad luck, but unless someone could point to a definite cause, I am left with a sense of shame...along with virtually every other human emotion.

Godiv
Godiv in reply to jimcaster

Oh I see. That’s where the shame came in. I have that too and probably a lot of other people do. We wonder what we did wrong. Too much sugar? Should I have not taken the antidepressant for all my life practically? Should I have said something when my landlady was fumigating every year in my apartment house? I guess you could drive yourself crazy. Life doesn’t come with an instruction book exactly or a crystal ball. So we don’t know; all we can do is move ahead. And you are doing that!

jimcaster
jimcaster in reply to Godiv

As are you! Thanks!

Godiv
Godiv in reply to jimcaster

😀👍

I wish it worked as well for my husband. He hasn’t been able to increase to an amount that makes much difference without extreme anxiety which is worse than all the other symptoms but if he tries to decrease it now he gets frozen which never happened before he started taking it. He now takes 1/4 Kemadrin morning and night to offset the agitation which seems to help along with his Apolloneuro device. Between them and summer he is fairly calm most of the time now.

Hi Jimcaster,I have been diagnosed 12.5 yeas ego an stayed off medication for 8 years .Should have started Madopar a couple of years earlier but I tried a "PD recovery" technique for last year before that and it required to stay off medication,

I go to the gym every day for 1 or two sessions a day, including body pump and aerobic sessions,

I always stay in the very back row in the gym floor and try not to see myself in the mirror but I do it to the extent of my capabilities.

1.5 years ego I added Amantadin to Madopar and it helps me immensely in terms of tremor.

Now my remaining issues are mostly tiredness and difficulties with fine small movements and dexterity of my hands, like typing messages on mobile phone.

I have a bit of dyskinesia but not much, at least to my knowledge and awareness.

Recently I increased my Madopar medication to 100 ml 4 times a day instead of 3, plus Amantadin and Azilect,.

I am 62 y o now and often I forget that I have PD- sometime even for a few hours in a row!

Last year before starting Madopar was really difficult, I felt like an invalid.

Often I even forget to take a pill and have it, lets say at 3 pm instead of 12 pm.

Tremor is coming back and reminds me of my condition.

I am really grateful to the doctors for the Madopar still I think my delaying the meds has been a main factor that helped me to feel almost normal now with no grave side effects of these meds,

I am still resisting taking more medication than is absolutely necessary!

Perhaps I should mention that I don't eat sugar or wheat. Whether it helps or not I don't know, I am doing it for some other health problem.

My advice: try to stay away from medication as long as you could but no longer!

That's impressive. Keep up the good work!

Well written Jim. I take CR as it gives a smooth doseage and was recommended by Dr C and he allso said B1 should stop dyskenisia- i hope so. Your right life is now and for living. Even more so after my brother died before xmas of an unforseen heart attack. Enjoy everyday like it your last.

You express your views well, Jim! I believe I feel much the same way! I’ve been on sinemet, for 4 years, now, and it makes all the difference, regarding my ability, to get around, and do normal, routine, aspects of life, such as eating, walking, dressing, and, basically function, unaided. Thiamine seems to help, also. Thanks for sharing your experiences!

Glad you have decided what is best for you, and definitely what Meds works for one person with PD is different from others. My husband took just Madopar for 4 years and was reluctant to increase his dosage as he started to get dyskinesia. This has been controlled by Rasagaline and Amantadine at low doses.He takes B1 and uses the Redlight hat and now taking broccoli tea.

Still walks 2 -3 miles a day, has slightly cur down on Madopar as he doesn’t need quite so much.

Good luck on your journey, you need to take what works for you, and as you say there are other treatments you could consider in the future.

I loved your post because it reminds me of the decision I made 1 year after being diagnosed with PD at 60. My Neurologist was explaining the various options of various medications. He said Sinemet was the most effective. At that time my PD was hardly noticed and was working full time. This lasted 12 years and my dosage have increased over the years maintaining a high quality of life. Many advised me to put off the sinemet since it would last 5 years.

jimcaster
jimcaster in reply to shelly9

Thank you for sharing your experience! Like you, I have read too many comments about a "five year honeymoon." We are all different, but it's reassuring to know that it's possible to maintain a good quality of life for well over a decade.

Like you, Jimcaster, I put off meds for as long as I could (four + years). At 71, my worst symptom was lack of stamina; I could not walk around the block. My MDS has been very understanding and always said I could decide when I wanted to go on meds. However, last summer, when I told him of my sheer exhaustion he said, "Why don't you just try Sinamet?" He asked me to give it a three-month trial. Within a week I started to regain my energy and now can do up to 20,000 steps a day. As a result of the drug, my tremors have decreased greatly and I have the energy I need to live a real life. I realize that it may catch up to me at some point but I'd rather live a fulfilled life today than "save up" for the future by living a subset of a real life in the present. My motto: "I want to enjoy my grandchildren and I want my grandchildren to enjoy me!"

Well put Jim. And the Sinemet will help with your exercise regimen too.

I am 61 and 6 years in and am truly thankful for l/c. I can play half a game of golf semi-decently. Of course, the other half is #@$&, but I am outside moving at least.

Haha! More than half of my golf game was #@$& long before I was ever diagnosed. That never changed. 😊

Haha 😂, semi-decently is a relative term, by the way! Cheers!

Another vote from me for sinemet from me. Question- has anybody noticed mood improvement from the sinemet? I feel less depressed and less apathy having dopamine back.

jimcaster
jimcaster in reply to bbc680

I have been fortunate not to have any real depression, BUT it has certainly been encouraging to write my name legibly again and not to have my toes curl up during walks! All in all, it has definitely improved my attitude and lifted my spirits.

Well said.

Jim, that’s great news. There’s no shame in taking medications we need. And they’ll help you do more and exercise more. I’m sorry you had shame about “giving in.“ There’s no shame in it. I think it was a smart move. I’m happy for you!

There e is no need to defend medication. Everyone should do what works for them. There is no right or wrong. There are no sides. It's simply a journey. I'm glad to hear you are feeling better.

jimcaster
jimcaster in reply to NRyan

Thank you. You are exactly right.

Wow !! Thanks so much everyone and of course Jim. This post has helped me feel so much better about taking my sinemet 100mg/25mg . I have had PD for 6 years but only started taking sinemet 1year ago. I take 1 in the morning and B1 over the rest of day. B y mid day now my left arm Tremors quiet a lot and I am getting a bit stiff in my back . At 60 years old sometimes I feel and look a 100! After reading all you have written I may now increase my sinemet to two a day see if I can get more out of my day!! I do a lot of walking, boxing, yoga and swimming but my energy levels are very low I do struggle a lot to keep up my exercise regime! Thanks again.

jimcaster
jimcaster in reply to Chaise

We each have to decide for ourselves, but I am not going to sacrifice in my 50's for the possibility of a better life in my 70's. Best wishes to you!

Good on you Jim. Madopar has made a big difference to me and like you and others, I would rather maximise my options now - time is finite, sadly.

I tried it twice, and wish like hell it had helped me, but no....

jimcaster
jimcaster in reply to FergusonJR

Dang. That's really unfortunate. I know some doctors use responsiveness to medication as a way of confirming a Parkinson’s diagnosis...

I’d like to know if LACK of responsiveness indicates a contra indication of PD. My MDS thinks not.....

ion_ion
ion_ion in reply to FergusonJR

As far as I know if the medication works that confirms PD. If it does not work that does NOT confirm NO PD.

Yes ion, that’s my understanding.

Me too, Jim.

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