Increase or Decrease Medication While On High Dose Thiamine

[jimcaster]

Someone else already asked, but I think this is worth having as a separate thread. While on high dose thiamine, have you decreased your medication? While on high dose thiamine have you increased your medication? For whatever it may be worth, I have been taking high dose thiamine since my diagnosis in May, 2018. I have never taken any medication for Parkinson's Disease.

[Hidden]

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[jimcaster in reply to Hidden]

How about you, Roy? While on HDT, have you increased medication, decreased medication, or kept it the same?

[Hidden in reply to jimcaster]

C/L 50/200mg, extended release.

three doses daily is prescribed.

Two dose a day to three and back to twice a day.

[KERRINGTON]

GREAT IDEA..also add symptoms which led to HDT increase/decrease, and number of years you suspect

you've had PD.

[Zella23]

My husband has been taking Thiamine HCL Since June this year and we have noticed improvements in some symptoms, some improvements with getting dressed, sense of smell improving and arm swings more. No change of meds at the moment been on same dose for 4 years sometimes adds in half a dose at 10 am if he needs it. Takes CL 125mgs 4 times a day!

[Hidden in reply to Zella23]

Dr. Costantini recommends taking CL daily as well as thiamine hcl. For best results. Your husband's Thcl dose?

[Zella23 in reply to Hidden]

My husband is taking 1.5 gms in the morning and 1gm in the afternoon. Was taking 1gm in the morning but recently put it up by 500gms to see if could improve symptoms even further. Will see how it goes. Seeing a new neuro at the end of this month and hope to share our regime of what supplements and exercise my husband finds helps with PD.

[jimcaster]

Dr. Costantini claimed that if a PwP took the correct dose of thiamine, he or she would not have to increase medication. Dozens of us are taking high dose thiamine. I'd really like to know if you have increased, decreased, or kept medication the same after months, if not years of HDT. PLEASE let us know.

[ParlePark in reply to jimcaster]

Excellent question Jim. I would like to know as well. Presently just on Amantadine for tremors and seems to be less and less effective. On 500 mg B1 over a year. Other than some dexterity loss seems to be ok

[Icequeen10 in reply to jimcaster]

I HAVE DECREASED FROM 5 TIMES A DAY TO 4. I ALSO TAKE MUCUNA PURIENS.

[Niggs]

I believe that in my case, part of the action at least is to enhance the currently prescribed meds. I settled on 1500mg per day as the highest without making things worse. Unfortunately, this dose did not improve motor symptoms but did have a dramatic effect in a positive way on my mental health.

I've now added into the mix Opicapone, the new comt inhibitor, which has got me from being housebound to building a deck in the garden. I mention this because there is not really much known yet about this drug, particularly with regard to interactions, and therefore I stopped B1. My mood started dropping soon after, propped up by the mobility regained by the Opicapone. But it is now a problem again and so I'm starting to try to re-introduce B1, but it is 'possibly' now causing problems, so it's back to low and slow titration.

[Dap1948]

I've stayed on the same meds but don't notice any PD symptoms now really. I've been on B1 since 2017 and take 200mg of ldopa a day. I'm in my 10th year since dx.

[alaynedellow]

Has taken me a year to get B1 dose right- i take 175mg a day quite a low dosebut any more too much. Take CR modopar twice a day and mannitol.

Most symptoms hv recovered now no connstipation, anxiety only there if shopping n too many people. Sense smell rtnd, fluid walking, no poker face, hand dexterity better writing improved, no cramps, no jiggy leg, no freezing nosudden stops, can mostly manage corners, all in all in best shape for years. B1 has been game changer hv days when i forget.

Have just had week hiking/yoga retreat in pyrennes walked some 70km in week and 2 x 2 hour daily yoga classes too.

Vegetarian diet noprocessed food, yoga classes, running and been able to swim agin.

Life still is beautiful.

[AmyLindy in reply to alaynedellow]

Great news for you! What was your highest dose ever tested and for how long? That’s quite a “low” dose ( for HDT !

[alaynedellow in reply to AmyLindy]

Dr C started me on 1.5g twice a day, he then reduced to just once a day. In last email from him he said i had lost my parkinsonism face. I had great improvement so knew B1 could work it was doseage issue. Once Dr said work dose up i started on 100 mg a day, i also added modopar as per his instruction.

I would sometimes take dosages for 4/5 weeks before it became to much. I have gone up to 500-600 mg aday but the 175mg seems to be perfect been on that dose for some 4 months now i found stopping for just one day enough to stop the overdose.

Its a case of persevering.

Maybe my dose low as only diagnosed over 3.5 years ago. Who cares really it works wonders .

[aspergerian in reply to alaynedellow]

Speculation: Your Krebs cycle is not overly burdened in regard to:

journals.sagepub.com/doi/pd...

en.m.wikipedia.org/wiki/Thi...

frontiersin.org/articles/10...