NeuroTalk Support Groups - Abbvie still enrolling for Duodopa study

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- - Abbvie still enrolling for Duodopa study (https://www.neurotalk.org/parkinson-s-disease/204711-abbvie-enrolling-duodopa-study.html)

Quote:

Originally Posted by Conductor71 (Post 1077905)

I just wanted to update all of you because I almost didn't meet the criteria due to low vitamin B12 level! I bring this up because we have talked extensively here about low B vitamins. In my case, this is the first I have tested deficient in the B range. I wonder if it has to do with high levodopa dosage that I take? I plan on asking my doctor why my B levels matter at all for this treatment. Maybe this will shed some light on our previous discussion?

As for the surgery, I have the tube implanted on July 2nd and will have med started up on July 8th. Oddly, the surgery will take 45 minutes and the drug titration 6-8 hours. I will let you know how it works; from what I have read it also helps nonmotor symptoms.

I'm not sure I reported this before, but the treatment is around $30,000 annually in Europe; there, PWP are considered for three options: DBS, Apomorphine pump, and Duodopa pump. Contrary to what we have rea
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Even more interesting is that a trial is starting for a subcutaneous levodopa pump this winter. My doctor informed me that I may be able to switch out into that trial; that would be scads less cumbersome were it to work!

If anyone has any questions, I will gladly check with the lead researcher.

Oh one last tidbit. The Duodopa pump has been in trial since 2000 in the US! This means there are people who have been on it for 14 years and are still on it with no adverse effects. Unbelievable that it is taking this long...

Laura

Hi Laura, just saw this and wanted to wish you well for this procedure. You mentioned being low on B12, Miirann says there is an ldopa link you might want to PM her, also make sure you check this out especially if you are not vegetarian or vegan. You can be deficient if you have a low normal as the reference ranges tend to be set too low. If you are not supplementing, and if it is ok with your device, check it out with doc, you could take a methyl cobalamin supplement they come in different strengths. If you have been feeling overtired, or just beluga recently it might help. Of course it could be a blip. If you want it investigated don't take any supplements and don't take anything with folate in it.

Well enough, because the real adventure is the duo dopa, so here's hoping it becomes a good solution for you. Let us know how it goes. Xxx

All the best Laura with the procedure.

The influence of levodopa and the COMT inhibitor on serum vitamin B12 and folate levels in Parkinson's disease patients.
http://www.ncbi.nlm.nih.gov/pubmed/17565222

Replacement therapy for vitamin B12 deficiency: comparison between the sublingual and oral route.
Cobalamin is traditionally administered by intramuscular injections. However, it has recently been shown [9] that the sublingual route is equally effective. In this prospective study of 30 subjects with vitamin B12 deficiency, we found that sublingual and oral administration of 500 µg of cobalamin was equally effective in correcting cobalamin concentrations.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1884303/

Thanks Lindy and Bog,

I am really glad to see your responses. I knew that long term levodopa treatment resulted in increase homocysteine levels and that this involved vita b levels, but I didn't fully grasp what this could mean until now. I knew this could increase risks of vascular problems including stroke, but I just now learned that high homocysteine levels also impact our metabolism of B12 resulting in deficiency. This in turn has now been linked to vascular dementia and may have a part in developing AD. This is clearly something we all need to be aware of.

Interestingly, taking Entacapone helps to correct this imbalance, but in lieu of that it is imperative that I, or any of us who take higher doses of ldopa, supplement their B vitamin intake. At very least, we should all be checking our levels regularly.

Laura

Just wanted to wish you good luck, Laura! I hope all goes well for you. :)

Those with low B12 levels need to be aware that there are several different routes to deficiency, and that oral supplementation does not work for everyone, and that test results are not always indicators of deficiency. As many symptoms of deficiency overlap with PD is important to note things we may have thought were 'going downhill fast' as PD mostly does not do this. The first signs of deficiency are very variable, for me it was tiny bleeds into the skin of my lower legs, called petechiae, and yellowish brown staining of the surrounding skin, due to plasma leakage, described as a later sign.

Two good sites are b12d.org, and the Pernicious Anaemia Society, also look for Sally Pachaloks book.

This is not a condition to mess around with, by the time it shows you will have had it for some time. As you did with PD, take it seriously and do your research, because most doctors will not really be aware of the implications.

B12d. Org has a poster you can download, which was presented in Paris this year. It has a lot of good basic information.

Just to add, if you are taking higher doses of B12 you will need to take folate too, they are codependent. Just don't supplement with folate before investigating b12 deficiency, it totally masks it by reversing the macrocytic blood cells that are an indicator of deficiency.