Hi everyone—I'm helping a friend who is really struggling. She was diagnosed only about 6 weeks ago and started on carbidopa/levodopa and then pramiprexole. She started thiamin not long after starting the prescription meds and we have increased the dose so that she's now using 4,000 mg per day. She has shown only a little improvement and her doctor is still changing her meds. Now I wonder if I should have waited until her prescription meds were stable before introducing thiamin. Given that her prescriptions are changing, should I stop the thiamin so that she has a chance to see what the meds do for her first? Any advice you can give would be greatly appreciated.
Daisy
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Thiamine hcl 4g daily is good choice. Over the next four months observe improvement.
TRACKING improvement
FIRST STEP: a UPDRS test, a push test with video, a walking and turning test with video, a talking test with video and possibly a writing test with video, standing from seated on hard back chair video with your arms crossed. These videos are kept on file to be used for comparison with future videos. This is a fairly accurate means of documenting improvements over time as it is actually fairly easy for some people to not realize how much they have improved over time.
Thanks for responding. Yes, we've done videos. It's still hard to tell if she's better. The problem is that I don't know whether any improvements or new symptoms are due to HDT or the meds, which she started at the same time. We're doing a tele-med appointment tomorrow with her Park doc because she's falling asleep abruptly without wanting to. I believe this is a side effect of the combination of pramiprexole & C/L, but it could also be that her HDT dose is too high, right?
Another question: I'm taking part in the appointment because she's having memory problems and needs support. Up to now we haven't said anything to the doc about HDT because I don't believe he'll support it. Should I tell him, given her symptoms?
Personally I would stop the thiamine and focus on getting the prescription meds right first. Thiamine does not work for all - makes me feel shaky and anxious.
I agree 100%! Get the prescription meds optimized before clouding the picture with anything else. It takes time to optimize your PD meds and your doctor/neurologist/MDS needs to see how you are reacting to those meds in order to make proper adjustments to your regimen. Adding other things at the same time can confuse the issue.
Once you are stable, then you can add one thing at a time to see how you react to it. Add more than one thing at a time and you will never know what is working and what is not working.
I agree with Astra. Newly diagnosed. New meds, Side effects to meds. Personally I would sort it all out. Get stabilized. If her meds are still not helping her symptoms then I might give Thiamine a try. I was falling asleep at dinner, at traffic lights, with friends while on pramipexole. Doc lowered the dose a bit....problem solved. As for me 500 mg thiamine daily.
Stop the thiamin. Get comfortable that you've reached peak condition with the meds first.
Thanks to you all for your responses. My friend has had edema, confusion, hallucinations, and abrupt sleep, all of which I think are from the pramipexole extended release, since they're known side effects of the combination of C/L and pram and because they started about when she started the extended pram. At her recent (phone) appointment the doc changed the pramipexole to 3x/day, and continuing C/L 3x/day. I'm hoping all of the above symptoms will improve.
The doc told us that it often takes awhile to find the "right" medication dose, and even then it often has to be tweaked because of changing symptoms. I asked my friend if she were willing to stop the thiamine and she said she'd rather not so we're going to keep on with it.
Yesterday she realized she'd been about three days without feeling that she's falling backward, which seems like a great improvement. Have any of you had that symptom improve with conventional meds? I had the impression thiamine helped with that more than the others.
Conventional meds are far more effective at controlling symptoms than anything else for me anyway. I take a load of supplements that possibly help, but I couldn’t manage without my madapor. Let’s hope it continues to work🙂
She is still taking thiamin and doing incredibly well. Her balance is good, her alertness is much better, her writing is better, her speech is better. The doctor almost can't believe it.
I'm sorry I don't remember what we started with. We increased it fairly quickly and she stabilized on 4,000 mg. She's doing really well: walking well, talking well, good mood, her writing has improved and her balance has improved greatly. She still takes C/L but the pramipexole was stopped because it was causing stymptoms of edema, sudden sleep, confusion and hallucinations.
Because of her success I have suggested HDT to another friend who has just started it.
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