My husband was diagnosed about 4 years ago though I suspect Parkinsons was developing long before that.
Main problem - neither Sinemet or Madopar has any effect on bradykinesia or tremor (let alone the non motor symptoms)and increasing medication e.g. Neupro patch = rotigotine dopamine agonist only led to augmentation and severe restless legs syndrome which spread to shoulders - at all times of day. The neurologists don't believe us and only offer more of the same. So we are very unpopular for withdrawing meds and doing our own thing!! Still, the RLS has improved since doing so.
We have tried Mucuna extracts instead, but am not sure whether these are still likely to cause the same side effects. I have a feeling that the problem with Madopar and Sinemet is the decarboxylase inhibitor which blocks vit B6. This vitamin is vital to so may other functions in the body.
Anyone else found the same ? Any advice appreciated.
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Yes, there could indeed be a B6 deficiency. Part of it may be caused by breakdown by carbidopa, but it is often present before diagnosis and can act as a trigger for PD. In my case, both were true, which caused my C/L medication to stop working, even at maximum dosage. The situation has improved now to the point where I often don't need Sinemet anymore!
However, an excess of vitamin B6 can also affect the effectiveness of levodopa. Vitamin B6 can accelerate the conversion of levodopa to dopamine, potentially reducing the effectiveness of levodopa.
So it is important to monitor your intake of vitamin B6. Do a test as soon as possible! If there is a deficiency, supplement cautiously with a maximum of 3 mg, preferably using the safe active form P5P. Re-test after 3 months and adjust if necessary.
Madopar and Sinemet - the decarboxylase inhibitor uses up vit B6, but that takes a while and according to what you say these did not work at all from the get-go. Also, vitamin B6 deficiency causes a lot of problems, but it does not prevent levodopa medications from working.
Moreover, relief of Parkinson's symptoms via levodopa medication is a key confirmation of a Parkinson's diagnosis. Failure to do so puts the diagnosis into question. What are his Parkinson's symptoms?
Agree anyone taking levodopa medication and not supplementing with abundant amounts of B6 as P5P should be testing B6 levels. B6 is required for over 100 enzymatic reactions, and B6 deficiency can have dire consequences. Yes you are correct it is required to make levodopa work, and I was wrong to say otherwise. However in this particular case levodopa medication did not work from the get-go. Presumably this patient was not short of B6 at that time.
While we are on the subject, 3 mg of B6 supplementation is adequate for healthy people, but it is woefully inadequate for almost everyone taking levodopa medication. You are allowing yourself to be unduly influenced by your unusual personal experience. For the vast majority of Parkinson's patients, the danger of B6 deficiency vastly outweighs the possibility of toxicity from the P5P version of B6. I take 70 mg of P5P daily and have done so for years, without any adverse effect. Others have reported similar experience.
"Abnormal B6 levels have been reported in 60 of 145 PwPD (41.4% relative frequency). Low B6 levels were reported in 52 PwPD and high B6 levels were reported in 8 PwPD. There were 14 PwPD, polyneuropathy and low B6. There were 4 PwPD, polyneuropathy and high B6. There were 4 PwPD, epilepsy and low B6. Vitamin B6 level was low in 44.6% of PwPD receiving levodopa-carbidopa intestinal gel and in 30.1% of PwPD receiving oral levodopa-carbidopa." [emphasis added]
I shall certainly follow up on the B6 levels and get a test before and after supplementation. Interestingly I believe B 6 has a role in the synthesis of all the neuro-hormones and enzymes like Tyrosine Hydroxylase which is part of the Dopamine pathway. My husband's symptoms started with loss of smell + weakness and slight tremor on the right side. The main symptom is fatigue and anxiety, and he walks slowly with no arm swing (unless I bully him!) - but he is still walking regularly. He is very slow and stiff and getting up out of a chair is becoming more of a struggle. It doesn't help that his circadian rhythm and therefore his sleep is affected, but because he also has congestive heart failure and AFib following upon a mitral valve repair in 2012 it is difficult to know what is causing what!!
Those are convincing Parkinson's symptoms. Since conventional medications are not any help it makes sense to consider high dose thiamine. About 4 months for full effect. Links:
We are still not completely aligned, park_bear…. B6 supplementation is not necessary for healthy individuals at all. It can be obtained through a varied diet. However I recommend PD patients to undergo a B6 test as a precautionary measure due to the risk of deficiency. Only if a deficiency is found, would I suggest starting B6 (P5P) supplementation (max 3 mg) also through B-complex or multivitamin. The impact of Carbidopa on your B6 levels is likely much less than previously thought. Through HU, I have gathered a decent database of B6 test results from PD patients. Some from PWP without supplementation, and some with.
Preliminary results show that measurements without B6 supplementation usually indicate a (often severe) vitamin deficiency. Strangely, one test result showed an overdose. However, ALL measurements with B6 supplementation, even at very small amounts of >4mg, indicate an (usually severe) overdose, regardless of whether it's P5P or pyridoxine intake. This is true regardless of Carbidopa intake. Shockingly, out of the 20 test results, none fell within the desired minimum and maximum reference range. This means that NOBODY had their B6 balance in order. Even after four tests, I also still haven't achieved a balanced B6 level. I hope to achieve this by the next one early January.
park_bear, if you or others on HU have B6 test results, please share them with me, either publicly or through chat. Please include the following information:
- Test result with stated minimum and maximum reference range
- Whether or not B6 supplementation was taken
- Amount of B6 supplementation in mg (including through B-complex and multivitamin)
- Form of B6 (pyridoxine or P5P)
- PD patient or not
- Daily dosage of C/L in mg or separate Carbidopa dosage, if applicable
- Date of the test result
- If possible, also indicate if there is peripheral neuropathy or symptoms resembling it.
The more data we have, the better we can identify correlations and potentially provide clear advice on B6 dosage. Thank you all in advance! 🍀
You provide no medical references in your comment. Your recommendation of 3 mg of B6 is woefully inadequate and will hurt people. The medical reference which I have already provided: sciencedirect.com/science/a... demonstrates that the dangers of B6 deficiency are vastly greater than that of B6 excess. It further demonstrates that this statement on your part is incorrect and dangerous: "The impact of Carbidopa on your B6 levels is likely much less than previously thought." Your statements regarding overdose reflect an improper standard of maximum B6 levels based on pyridoxine toxicity.
Also, you never heeded my request to test your B6 to make certain it is actually P5P and not pyridoxine: healthunlocked.com/cure-par...Until you do so there is no assurance that your experience of toxicity is not due to pyridoxine. In addition it is possible that your peripheral neuropathy is a result of B12 deficiency.
You have merely accepted at face value your doctor's knee-jerk reaction to a high level of B6, which is based on an upper limit set due to pyridoxine toxicity and not P5P. You can rest assured my B6 level is vastly higher than the improperly set upper limit, that it has been so for years, and I have not suffered any ill effects as a result.
Firstly park_bear, I would like to point out that I have learned a lot of the information about B6 in relation to PD from the link in question. However, with evolving understanding and the experiences of others, it seems that you are now providing incorrect information about the necessary dosage of B6 supplementation. If you have any "medical references" that can clarify this, I would be interested in hearing them. I have been unable to find any, and inquiries at HU have yielded nothing. Therefore, it is not clear to me on what basis your initial assumption, that B6 supplementation should be equal to your carbidopa intake, is founded. In any case, it resulted in a severe overdose and worsening of my peripheral neuropathy (PN), and there was no doctor or research study that warned me about this or could guide me further. So, I am not bowing to doctors who knew nothing; I am simply using my own common sense.
Questioning my P5P supplement and using it as a means to prove your point is not convincing. Some people may prefer to take an overdose of supplements, but I value maintaining reasonable normal levels. Especially if you have already experienced PN due to a previous B6 deficiency, an overdose, P5P or not, is not advisable. Like the other B vitamins, my B12 values are deliberately kept on the high side, but within the desired reference range.
I am creating this database of B6 test results, to investigate the interaction between B6 and carbidopa. The likelihood of this interaction is evident from the B6 deficiency observed in almost all test results of PWP who do not take additional B6.. On the other hand, your dosing advice in all cases leads to a significant overdose. If the individual PWP does not see that as a problem, as you do, that’s fine. However, if you prefer normal values, I stick to my previous advice: first test and only supplement with a maximum dose of 3 mg if there is a deficiency or very low B6 level. If a new test after 3 months indicates a need for more, then it should be done. I would appreciate receiving the test results again, not to prove myself right, but to finally gain clarity on how B6 dosing should be approached in PD because such data is still lacking.
This DIY data research does not meet the requirements of a serious scientific study. However, I hope that with this, I can generate interest among the scientists I have been in contact with, to initiate a responsible research project.
Per Vitamin B-6-Induced Neuropathy: Exploring the Mechanisms of Pyridoxine Toxicity: "The clinical presentation for PN [Pyridoxine]-induced neuropathy in humans is largely drawn from a series of case reports involving large doses, typically in excess of 2 g/d, taken over many months to years...The case reports found that excessive PN intake led to progressive sensory peripheral neuropathy."
Your specific claim of neuropathy due to P5P, at a much lower dosage, is, as far as I know, unique. As such, careful scrutiny is in order. If you choose to ignore this issue that does not make it go away. I would be interested to know if there are other examples.
At this point I'm advising others to exercise their own judgment as to level of B6 supplementation to use, in the form of P5P. With that said I believe 3 mg is dangerously low, especially for people taking large amounts of levodopa. The current practice of medicine generally ignores the distinction between pyridoxine and P5P. The upper limit of plasma level was almost certainly set without regard to whether the source of the B6 was P5P or pyridoxine.
I think compiling a database in this matter is a good idea. I suggest including the following in addition to the measured level of B6:
• Duration of supplementation at a particular level
• Which version of B6 was used
• Whether adverse effects such as neuropathy were experienced
Mio marito, dopo 5 anni di madopar, 5 di xadago e 2 di ongentys, ha sviluppato gravi sintomi cognitivi, che si presentano in particolare dopo la prima assunzione di madopar e xadago del mattino. Riducendo a metà la dose di madopar mattutina, è più rigido, ma più lucido. Ora stiamo provando a togliere ongentys per qualche giorno e anche questo sembra aiutare la lucidità. Ci accomuna a te il fatto che i neurologi non credono sia colpa dei farmaci.
Thank you - it looks to me as though many extra symptoms are caused by the medications, particularly if they contain inhibitors. This makes sense to me - if the body is not allowed to break down substances it cannot use, inevitably there will be a build up. Good luck with finding a balance that works for YOU - rather than the neurologists!
The short response is no and the symptoms of insomnia, anxiety, stiffness, slowness and slight tremor are gradually getting worse. He doesn't get even get the pattern of 'on' or 'off' periods like most people do - and if he increases the dose it gives him RLS, but no relief from the motor symptoms. Perhaps he just doesn't absorb well.
My husband has the same problem, he has tried Sinemet 3-4 times for several months with no luck, plus some other medications and his symptoms get worse. He has hands tremor stiffness and no arm swing but no constipation, no anxiety, and his sense of smell is perfect. We also try mucuna with the same results
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