Advanced Parkinsons treatment

I have had pd for at at least twenty years. After dx I had been put on Cabaser by a neurologist who then retired and my gp informed me that there were insufficient funds to replace him. He would just keep prescribing this med. and I would just continue without a Neuro. Cabaser turned out to be particularly problemmaical for me because, while I was left to my own devices I had some ICD issues which grew and matters became quite serious and life changing. Very soon my med. was changed to Sinemet and for 5 years things were fine. But I am now in my 10th year of taking Sinemet and its efficacy is unpredictable, short lived and leading to secondary dystonia in my right foot. My present Neuro has ruled out prescribing any dopamine agonists and even dbs because in large part to my previous reaction to the much written about Cabaser.

Has anyone had any similar experiences or recommendation.

44 Replies

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  • You taking the immediate release or CR version of Sinemet? The CR version made all the difference for me.

    If you have already experienced ICD issues that would rule out dopamine agonists(DAs). That's not the only problem DAs cause so in my opinion they are not such a good choice in any event.

    How about MAO-B inhibitors Azalect and Selegiline?

  • Thx Park bear. I am on 2 x 100 mg sinemet cr and 1000 sinemet plus daily. I also take zandopa (equivalent to 150 mg levodopa)

    Tried Azilect and Zelapar at different times a while back. Do you suppose that they might help me now?

  • Rytary is a good source of carbidopa levodopa. It works better and a little longer than sinemet. I am in my 10th year and doing good on Rytary.

    If you are able exercise helps a lot.

  • Forgot to ask if 1000 (thousand) sinemet plus was a typo? How much and how often you take. Thanks

  • No not a typo! I take 1 Sinemet Plus (100mg levodopa) every two hours during the day. This is supplemented by Zandopa at 10 am 2 pm and 6pm (150 mg levodopa). At bedtimet I have 1x Sinemet CR and a 50gm. The same at about 4am. I also take 2x100 mg Amantadyne daily. Exercise: Yes, I do quite a bit and manage to play tennis 2 or 3 times a week. But when the meds wear off I'm like a zombie .... When I used to take an agonist this did not happen. I was hoping to be prescribe a low dose of Neupro (patch) and reduce the Sinemet.

  • Batwing, thank you for the clarification....it's every two hours of 25/100 , 5X daily.....PLUS additional meds. Got it!!!

  • Hi enjoy

    Just to say it's actually 25/100 x 7 plus the other meds.

  • batwing, appreciate the clarification

  • I am unsure about the availability of Rytary in the UK.

  • NUMIENT or Patrome is the name in the uk

    This web site i believe eays it has been approved

  • Numient is licensed by eu but NICE has not approved it in UK.

  • TO BAILEY TEXAS: When did you change over to Rytary and what were you taking before that? I'll take all the advice you're willing to share!! I'm really considering Rytary as I'm exhausted from battling wear off problems now for nearly a year.

  • My advice is to try Rytary we all have different reactions to meds.

  • Hi again BT! Do you have dyskinesias yet?

  • I think what have is more like Paroxysmal Dyskinesias. I included

    a link below. I have episodes that last up to an hour. They happen only at night and not very often.

    dystonia-foundation.org/wha...

  • Good grief, I just wrote you a note and it got erased. I have a 54 year old son DX Jan, 2015 (Datscan 8/2015)...currently was taking 2.5 C/L-dopa (25/100) 3X daily. Switching him to predominantly Mucuna capsules. I'd appreciate feedback on WHEN you started the Zandopa, HOW (added it to your meds?) Body reaction (s)? How long to get to dose? did you reduce the sinemet, etc? Thank you!!!

  • Why the switch to Mucuna.

    Same med as C/L

    except C/L is more regulated and dose to dose you get a more consistent product.

  • Hello again Enjoy. With regard to the introduction of Zandopa research suggested that 150 mg of the powder is equivalent to 50 mg of levodopa. I just brought a small measuring device and substituted a half Sinemet for the Zandopa which I mixed in a cup of water. But I suggest to anyone to do their own research. I gradually increased the Zandopa every week. Not spectacular change but good to know I am limiting albeit in a minor way the Sinemet.

  • batwing, thank you for info

  • Zelapar is low dose selegiline, only 1.25 mg. I take selegiline 5 mg 2x day. I believe it helps me with Parkinson's fatigue.

  • Do you have any experience with Comtan? I'm also interested to know details behind your DA dislike because I think you may be on to something! Please share if you can and will. Thank you! Best of luck!

  • Hello kimdoc

    Was the q. about Comtan 'maybe on to something' (DA) address ed to me?

  • I'll assume it's me. Comtan- I think I have tried it and that it gave me gastric negative results. Can you clarify what you meant by 'you may be on to something'.

  • Sorry - just now saw this. I have already had a colectomy & gall bladder removal and that led to OFF episodes that I'd never had before. VERY frustrating.

  • No experience here with Comtan. Re Dopamine Agonists ("DAs"), they are notorious for causing Impulse Control Disorder - compulsive gambling, sex, or eating, among previously responsible individuals. Some poor souls ended up losing everything. Sad stories all over the net, and lawsuits.

    But that is not all - DAs commonly cause blood pressure dysregulation. Orthostatic hypotension is part of it - stand up, faint, fall down. The other part is Supine Hypertension - Very high BP laying down. These problems may wrongly be blamed on the Parkinson's.

    As a result of taking 15 days of a minimum dosage of a DA I suffered autonomic failure of BP regulation and found myself unable to stand without fainting for several weeks. I stopped taking it immediately once the problem became apparent. Full recovery took a couple of months.

  • Wow thanks park bear. I wonder if the Neupro patch would have served you better?

  • Perhaps you are unaware the Neupro patch IS a Dopamine Agonist.

    I do just fine with Levodopa, thanks.

  • Hi Bailey.....everything I have read on the Mucuna is that it is benevolent and has many additional helping ingredients than C/L. MP, a product that has been used for more than a 1000 years has to have something going for it. Back before the borders with China were opened, I was invited along with some other people (education) to be guests of the Chinese Govt. Everyone, except me, came down with a HORRIBLE respiratory illness. The choice for those who were ill was WESTERN MEDICINE or Chinese Medicine. Very few chose Chinese medicine (herbs in a bag to mix with hot water for a tea), mostly those who had been children of missionaries or were acquainted with Chinese medicine. Those who chose the Chinese medicine were on their feet quickly and those who chose Western Medicine took a longer recovery. Too me "modern" and "regulated" does not necessarily mean better. Back in the early 90's there was a special on TV (PBS???????) called HEALING AND THE MIND. A small portion was devoted to a Harvard prof who went to China to explore their way of health. I never forgot that program. In addition, I am of Mexican descent (both sides of the tree) and I was exposed (by my grandmother) to herbs and ointments for healing. In those days it was called "ignorance and superstition". Today it's called "alternative medicine". Trust me, I tremble when I explore and venture out of the "western medicine" way on my son. There you have it, a long answer to a short question. Each morning and night I pray that my son will get closer to healing. In the meantime he is enthusiastically trying the Mucuna. I am grateful that his Neuro said he had "NO PROBLEM with us trying and if there was no progress he would adjust his meds at his next appt in October. In the meantime I am inquiring of all who have taken the road before me to share their experiences.

  • I have recently started taking Mucuna and it is the only medication I am taking, I also have a wholistic approach to medicines. So far a little less tremor not dramatically so, my foot dystonia is much improved as is my stiff and slower movement on my left side

    All I all I am happy with this progress , though I would like to take a magic pill that got rid of PD unfortunately I don't believe we yet have such a cure at this stage

  • How much are you taking and when did you start ryanjsmes1? Tx

  • I started about 3 weeks ago and have stuck to a 3/4 teaspoon twice a day of organic much a powder

  • I started on Monday taking 100 mg once a day. The directions on the bottle say to take once a day for 3 weeks before increasing. How long before you saw results?

  • AmmieM, no need to respond, but wanted to say THANK YOU for sharing what I forgot to ask, HOW OFTEN TO INCREASE. I started my son on Solaray Dopa Bean (333mg extract equivalent to 50 mg of sinemet plus) around Aug 11, 2016. Prior he was solely on 2.5 tabs of 25/100 C/L, 3X daily. Steadily increased MP (MucunaPruriens) to present dosage, 8/31/16, of 2 capsules of DopaBean (equivalent to 100mg of sinemet plus) and lowered his C/L to 1 tab (100mg). That all was done in three weeks. I BELIEVE too fast. I appreciate you sharing the directions on how long to wait before increasing (changing dosage). This last time I saw discomfort in my son, but when I told him I thought I had moved too fast, and suggested that we I increase his C/L back up a little, he refused. Yesterday, only 3 days with the increase/decrease I saw an increment of improvement. I will leave his dosage alone for at least 3 weeks. It stands to reason as it would take the MP time to integrate within the body. It is suppose to be 2 to 3 times more potent to the synthetic C/L.

    I learned another lesson from you. From now on I will start my reply with the name of the person. Since we all respond at different times, I find that sometimes "my reply" is not under the person I intended. Thank you! I live in Los Angeles, time to shower, have breakfast and get out to a Sat morn meeting.

  • Enjoysalud I can't take credit for the idea of adding the person's name to the reply. I got a message to do that on my phone. I wish you and your son Lots of good luck.

  • AmmieM, I don't have a cell phone. Your example, where ever you learned it, served me well.

    QUESTIONs: Are you taking any pharma meds with your Mucuna (M)? What brand of M are you taking? Capsule or powder? Thanks!

  • Due to the many uncomfortable side effects of Mirapex, the doctor has wean me off it so right now I'm just taking supplements. The brand I I am using is source naturals and I get it from the Mars Venus.com website.

  • Forgot to add that it's in capsule form

  • Thank you. It's the one that rhenry45 posted in his SYMPTOM FREE ESSENTIALLY is using.

  • Thank you, ryanJames1. Quick question: Was MP (MucunaP) the first and only medication you have ever tried or have you in the past used Pharma meds?

    I think we get more info on what is happening in this country regarding PD "helps" but I'd like to think that maybe in some scientific lab in some university lab (where we are unaware) is working on a solution because there sibling or parent or loved one who has/had PD. It is a comforting thought. Thank you for your input.

  • Hi no I was only on Chinese herbs prior to trying Mucuna I am also very active and quite fit for a 62 year old which I think helps the tremor I find just embarrassing and the dystonia and slowness and stiffness more frustrating the greatest improvement has been with the latter two which is great the foot dystonia is also much better though appear s quickly still if I get stressed

  • Hi Enjoysalud I have only tried Chinese herbs prior to trying the Mucuna I think increased stiffness in my left side printed me to try it and I am very happy with results so far

  • Wish I could spell is it me or spell check? Lol!

  • Thank you, thank you! I just appreciate you responding. I sometimes find when I write that words are left out or there becomes their.

  • Never heard of Cabaser but addition of Requip might help stretch out the intervals. Dunno. I'm 15 years in and am a having wearoff problems for the first time + the dystonias you describe. I take two 25/100 Sinemet + 1mg Requip QID and supplement 3 of those doses with 3.75 mg of tranxene (in the valium family) + a Benadryl at bedtime. I sleep fairly well at least -- 6-7 hours usually. Good luck!

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