Should he increase C/L dosage?

[Mjm012649]

My husband was diagnosed 4 years ago. He is on C/L 25/100 4x/day. Also .05 rasagiline, and B1 500 mg 1/day. In the last 6 months he has gone downhill ... slower movement, cognition/slow thought process and reaction time, balance, very poor sleep, poor posture. Neurologist is suggesting increasing C/L. We are so hesitant because of all we hear about future issues from C/L. But his quality of life is declining right now. Should we increase? I need a pep talk!

[Hidden]

Don't increase C/L.

Parkinson's disease relief:

Diagnosed 2012

My regimen:

The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms...

Entering my 7th year post diagnosis and have not fallen, not once, to the surprise of my neuro. Was seeing neuro every 6th month, last visit he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.

New schedule, now I follow this regimen:

3 x day C/L 50-200 ER : 8 am, 2 pm, 8 pm. Because it is ER, I take with or w/o food.

2 x day (8 am 2g, and 2 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules

B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:

(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)

Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever...".

Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.

I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –

Doctor Costantini - “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.

Join my facebook group:

"parkinson's thiamine hcl"

facebook.com/groups/2322600... ; …

Parkinson's Relief, Questions and Answers

many months ago I reduced C/L from three times a day to now two times a day. Before and after I experienced no down time.

[Mjm012649 in reply to Hidden]

Thank you. But you are taking 50/200 C/L.

Do you think it would be helpful to increase to that dosage?

[Hidden in reply to Mjm012649]

Let your experience, not so much your neurologist, be your guide. Years ago I was started on low dose C/L. I could not identify any improvement. The following months I tried more C/L, various park meds to include Neupro patches. By the fifth or so year, see my post, I was increasingly disabled by each symptom that reared its ugly head. I promise you, thiamine hcl will be your husband's savior. May be his savior if he finds the right size dose that brings improvement without causing adverse reaction. The therapeutic dose is two grams at breakfast and two grams about five hours later/lunch time. Once the word spread to America and non-Italians Doc. Costantini was confronted by people announcing reaction. I believe many of these complaints arise from the gut fear, scepticism about what B1 can do. People imagine things. There is so much future health, freedom from Parkinson that, not a cure, people must give thiamine hcl a fair opportunity to stop Parkinson's progression. There is wealth of protocol information on the Facebook group, many do not take time to study.

[Smittybear7 in reply to Hidden]

What dosage of B1do you start at? How long did you stay at that level?

[jeffreyn]

Could you say more about his B1 journey (e.g. when started, when (and how) settled on 500 mg/day)?

[Mjm012649 in reply to jeffreyn]

Started Solgar B1 500mg, half tablet (250mg) 8 months ago. Increased to 500mg five months ago. Then increased to 750mg two months ago. Symptoms increased so he discontinued for 1 week and started again at 500mg, which he seems to tolerate better.

[jeffreyn in reply to Mjm012649]

For the last 8 months he has been taking high-dose B1 (various dosages), and, as you say, "In the last 6 months he has gone downhill". Nothing else has changed. Have I understood that correctly?

[Mjm012649 in reply to jeffreyn]

Yes.

[jeffreyn in reply to Mjm012649]

If it was me, I would stop B1 for a couple of weeks to see if there is any improvement(s). But I have no experience with B1, so I invite anyone with B1 experience to comment on my observation.

[Mjm012649 in reply to jeffreyn]

Thank you for taking the time to listen and to give me your thoughts. I am on the same thought wave ... discontinued B1 a couple of days ago. Will restart in a week or so at a lower dose (250mg) and work up to 500mg. Meanwhile ... last appt with the neurologist, he suggested increasing C/L. We are hesitant considering the eventual side effects of C/L. However, considering that my guy is 72, maybe quality of life now should be our focus. ???

[jeffreyn in reply to Mjm012649]

"slower movement, cognition/slow thought process and reaction time, balance, very poor sleep, poor posture"

If it was me, I would be focusing on improving these symptoms now, rather than tolerating them into the future in the hope of maybe delaying the possible onset of dyskinesia.

I am 63 and am also 4 years since diagnosis. I am currently on 5 and a half 100/25 tablets per day.

[Mjm012649 in reply to jeffreyn]

That’s exactly what I wanted an opinion on! Quality of life now versus complications in the future. Thank you for understanding! How are you doing on that dose? And, what is the timing of your doses?

[jeffreyn in reply to Mjm012649]

As you know, each case of PD is unique, so my answers to your questions are only relevant to me.

I have tremor-dominant PD. From past experience I know that if I take more than one 100/25 tablet at a time, I get (mild) dystonic dyskinesia in my right foot (my PD affected side).

I'm currently taking one 100/25 tablet every two and a half hours, starting at 8am (the last dose at 8:30pm is a half tablet). This fits in fairly well with my meal times, and provides good symptomatic relief and no dyskinesia.

However, I'm still experimenting with the dosage, to try to achieve even better symptomatic relief, while still avoiding dyskinesia.

[Smittybear7 in reply to jeffreyn]

I'm taking one c/l (25-100)every 8hrs. Is that what you are taking?I'm experiencing some involuntary movements. I'm afraid to adjust the dosage for fear the involuntary movements will increase. I'm also afraid to start back on b1 at the wrong dosage. Any suggestions? Thanks for your help

[jeffreyn in reply to Smittybear7]

My c/l dosage is still roughly the same as 3 years ago (see above).

Can you describe your involuntary movements, and when they occur (in relation to your c/l doses)?

Regarding your B1 issue, I would hold off on changing anything until the c/l issue is resolved (i.e. only change one thing at a time).

[Smittybear7 in reply to jeffreyn]

Typical schedule 1 c/l at 6am,2pm ,10pm.1 5mg baclofen 10am,10pm. Involuntary movements occur between 9-11am,Then 4-7 pm and 4-6 am.The involuntary movements right shoulder shrug, lip quivers mouth pull to the left and sometimes an increase in resting tremors, tightening up / spasms right leg and foot. It varies from day to day. Stress definitely exacerbates it. Somedays I have very little. I'm working with a neurologist and also a movement specialist. Movement specialist- cut pills in half and take every 4 hours or add amantadine. Neurologist-could try that or continue with the current schedule if the involuntary movements aren't bothersome.. I'm also having constipation issues and have to have a CT.Is your dosage 25 carbadopa and 100 levodopa?Do you not need it at night? Between 4-6am,if I wake up increased tremors. Thanks for your help

[jeffreyn in reply to Smittybear7]

Thanks for the detailed reply.

I take the Madopar 125 tablet, which has in it 100 mg levodopa and 25 mg benserazide. I don't (yet) need to take it during the night.

Your involuntary movements are obviously bothering you, as you have asked for suggestions. So your neuro and your MDS are effectively saying the same thing, which is to try half a c/l (25/100) tablet every 4 hours. You could consider it as an experiment to collect more information.

[Smittybear7 in reply to jeffreyn]

Thanks I'll give it a try. Just don't want to make things worse.

[jeffreyn in reply to Smittybear7]

Your neuro and your MDS would have warned you if they thought it could make things worse.

The only downside I can see is that it is more onerous to take a dose every 4 hours. But this dosage change is just a temporary experiment (at this stage), and one that you can easily reverse at any time.

[Hikoi]

Yes I would, you can ready plenty of anti drug rhetoric here and lots of fear mongering. Always check how long people have been diagnosed on their profile. That gives a context to their responses. I would be inclined to try because if not better after 2-3 weeks he can decrease. You have to live now not in anticipation of some future reward which may never eventuate. Would we deny a diabetic their insulin because of long term effects? Anyway levadopa isnt the bogey, its disease progression. Thereare other threads on this. Good luck. I know how hard it is to feel ruled by meds.

Low increases and slow is my approach and under rather than overmedicate.

PS is he exercising, it can be very hard to do without enough c/l.

[condor39 in reply to Hikoi]

Well said!

[Mjm012649]

You are so kind to take the time to respond. I value your opinion.

[JohnPepper]

Hi MJM. the rasagiline can only be taken in that dose. It has been shown to have a positive effect on the progression of Pd but NO OTHER MEDICATION HAS! So if you inv=crease it you are only possibly making the side effects worse

If you want to do fast walking in addition to taking the rasagiline then you will be on the right track. I took selegiline for eight year, while doing the fast walking and I was able to come off the medication in 2002 and have lived a 'normal' life since then. I am 84 years old and still do the fast walking.

Look at my website - reverseparkinsons.net and contact me. I will help you onto the right track at no cost to you.

[Smittybear7 in reply to JohnPepper]

Having trouble fast walking for very far and for very long. Any suggestions?

[Mjm012649]

Thank you, John!

[JohnPepper in reply to Mjm012649]

You are human and you have Pd. Do you expect to sudddenly be able to walk i kilometre in less than 10 minutes? Whatever you can do, be it 1 minute or ten mintes, that is perfect. Stick to the time you started walking for 2 week, (7 walks every second day), Ellvery second week try to walk for longer, then stick to that new time for the next two weeks. Continue doing that until you are walking for 1 hour and do not increase the tiem any further,. Just try to continually walk faster and faster and faster. After a couple of years, depending on each individual, you will probab;ly be able to slowly start coming off your meds. Keep in touch

[eaglet]

I think you need to listen to your movement disorder dr.

[Astra7]

I would definitely up the c/l a bit. No point suffering now when there is as chance to be ok. Also there is no saying it will be linear - I increased my dose steadily for 3 years and then actually managed to reduce it by 1/6 for the past year..I am in my 7th year and still have not told work or my kids although I think it is going to become obvious soon as it is getting harder to stop squirming.

I have also taken azilect and NAC since diagnoses for what it’s worth.

Also do listen to the much maligned John Pepper - he is onto something re excercise.