My mom has been on HDT B1 at 1000 mg for almost a year now. I had her take a week break since I was not really seeing much improvement. I thought maybe she needs an increase in mg, so I started her back with 1500mg. However, I am noticing a big increase in dyskinesia, but less off times. I am wondering if C/L needs to be reduced as she is getting close to the right B1 dose.
Has anyone been able to reduce their C/L dose once they started on High Dose Therapy B-1? If so, how and why did you decide to reduce C/L?
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TSonmez
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I know other forum members have mentioned about being able to reduce their C/L dosing once they added B-1 to their regimen and hopefully they will chime in on this important point!
Yes, my husband took 2 C/L's at breakfast, lunch and dinner. When he was up to 4 doses of B1 he told me something felt like it was holding him back. Reduced the C/L's down to 2, 1 and 2. Then 2, 1 and 1. Then reduced the B1 down to 3 (2 breakfast and 1 lunch). This seemed to be the magic number.
Since all was going well, we then switched from brand C/L to generic to save time and money (mail order through Pharmacy). Learned the hard way that fillers in the generic and different manufacturer can cause issues. Hubby started falling every day until we went back to the brand. We had to restart the B1 with just one daily and keep adjusting until we got back on track.
That is very helpful information, thank you for sharing! I like that you were both patient in trying to figure out the correct dosing for both C/L and B-1. So you were actually able to cut the C/L by a third by adding B-1! I imagine that move probably helped to reduce the chance of C/L related dyskinesia ever creeping in! Do you feel that the B-1 has helped as far as symptoms?
Thank you so much Linda. I am hoping this will be the case with my mom. She takes C/L every two hours once she wakes up until bed and then an controlled release at night with one or two C/L during the night. She is very advanced. I am hoping that I can get her at the right level of B1 to start seeing some relief for her.
i have had a natural decrease in my parcopa/entacapone (50 mg). i was taking it 5 times a day........started not waking up for my middle of the night dose. so i am down to 4 times a day - and sleeping 8 hours a night.
In my opinion reducing ldopa after a short period of b1 doesn't make sense even if we all want it. It doesn't make sense because the lesion is there and remains that we Pwps work with up to 30% / 50% of dopaminergic cells and if we don't help them they won't produce enough dopamine. After a period of a few months a small adjustment of the ldopa is possible because the part of the suffering cells could be "refreshed" and therefore brought to full functionality. It is because we must assume that the PD hits the cells according to a gradual scale so there will be a part of dying, dead, suffering and healthy cells according to a gradual scale. What happens if the suffering party is suddenly rehabilitated? Exact! you would have a sudden slight thawing and would remain stable. This would be very individual based on the extent of the lesion and the suffering characteristics of the dopaminergic cells that survived the disease. Much more important would be to know if b1 has a neuroprotective effect over time, but just time will tell. Halloween is approaching and marks my fourth year of using the b1, and I must say that I am satisfied. I will be honest, in my opinion a small decline in 4 years there was because I feel a little more rigid at night, but I still work full time in a flower shop almost alone with my wife who sees little, according to my wife, I improved instead. Mah mystery of the PD and wives. Have I reduced LDopa? yes, but if you study Wriga's research (HU poster) you can understand how much this substance is volatile in our body and therefore the doses are very personalized for each of us based on metabolism, diet and other drugs. They are called drug interactions. The worst nightmare for doctors and pharmaceutical companies. A great change is the use of magnesium threonate in normal low or medium doses, the diet rich in fresh vegetables to ensure the body all the minerals and vitamins it needs with the b1. Also do all the exercise you can, but this is not my field. Summary of the day: if a problem seems insurmountable to you ... double it and you'll see that it gets smaller, that's how I face the PD. All these are just my theories and I could be denied immediately, but it is also my experience as a sick person.
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