6 replies to this topic

[plastikman]

Hello from Spain,

my father is suffering from multiple system atrophy, no treatment neither hope from our doctors. I came across this forum and wonder to ask if there is something giving good results to control progression.

Thanks all 

[Pantheon]

Hello,

 

What type of MSA your father was diagnosed: Parkinsonian (MSA-P) or Cerebellar  (MSA-C)? 

[plastikman]

Hello,
No information told by our doctor but main symptoms seems yo be the cerebellar msa-c variantes.

[Pantheon]

Accurate diagnosis of MSA may be challenging, an FDG-PET, MRI & SPECT Scan paired with distinctive for the disease symptoms may further support the diagnosis of possible MSA. I suggest you refer to Medscape regarding available diagnostic methods and procedures for MSA at: http://emedicine.med...154583-overview

 

MSA is a rare neurodegenerative disease and the exact cause is not well understood.  The desease may involve mitochondrial dysfunction and alpha-synuclein protein accumulation. In MSA a possible mutation of the COQ2 gene which encodes an enzyme essential for the biosynthesis of coenzyme Q₁₀ may be associated with causative mitochondrial dysfunction (Barca E1, Kleiner G1, 2016)

Since the condition is rare there is limited research on supplements in large scale studies with MSA patients. However there are a few studies with supplements in Parkinson disease which shares some characteristics with MSA and which also involves mitochondrial dysfunction and alpha-synuclein protein accumulation.

 

You may consider Antioxidants that target: 1) mitochondria protection and biogenesis, 2) alpha-synuclein suppression, 3) Neuro protection and 4) overall antioxidant protection; all these may delay the progression of the disease though I’m not aware of any current large scale study to support that.

 

1) Ubiquinol CoQ10
Decreased Coenzyme Q10 Levels in Multiple System Atrophy Cerebellum (Barca E1, Kleiner G1, 2016)

https://www.ncbi.nlm...pubmed/27235405

 

2) PQQ Pyrroloquinoline Quinone (BioPQQ)
There are  a few formulations in the market that combine both Ubiquinol CoQ10 + PQQ

 

Effect of the Antioxidant Supplement Pyrroloquinoline Quinone Disodium Salt (BioPQQ™) on Cognitive Functions (Adv Exp Med Biol., 2016)

https://www.ncbi.nlm...pubmed/26782228

 

Neuroprotective effects of pyrroloquinoline quinone against rotenone injury in primary cultured midbrain neurons and in a rat model of Parkinson's disease (Neuropharmacology, 2016)

https://www.ncbi.nlm...pubmed/27108097

 

3) Acetyl Carnitine + Lipoic Acid

Combined R-alpha-lipoic acid and acetyl-L-carnitine exerts efficient preventative effects in a cellular model of Parkinson's disease. (J Cell Mol Med., 2010)

https://www.ncbi.nlm...pubmed/20414966

 

4) NAC (N-acetyl-cysteine )  - Glutathione Precursor

Oral N-acetyl-cysteine attenuates loss of dopaminergic terminals in alpha-synuclein overexpressing mice (PLoS One. 2010)

https://www.ncbi.nlm...pubmed/20808797

 

N-Acetylcysteine boosts brain and blood glutathione in Gaucher and Parkinson diseases. (Clin Neuropharmacol. 2013)

https://www.ncbi.nlm...pubmed/21587143

 

5) Omega 3 Fatty Acids (DHA)

 

Neuroprotective effect of omega-3 polyunsaturated fatty acids in the 6-OHDA model of Parkinson's disease is mediated by a reduction of inducible nitric oxide synthase. (Nutr Neurosci, 2017)

https://www.ncbi.nlm...pubmed/28221817

 

6) Green Tea (EGCG)

 

Neuroprotective molecular mechanisms of (−)-epigallocatechin-3-gallate: a reflective outcome of its antioxidant, iron chelating and neuritogenic properties (Genes Nutr. 2009)

https://www.ncbi.nlm...les/PMC2775893/

 

7) Anthocyanins ( Blueberries are rich in Anthocyanins)

 

Neuroprotective effects of anthocyanin- and proanthocyanidin-rich extracts in cellular models of Parkinson׳s disease. (Brain Res. 2014)

https://www.ncbi.nlm...pubmed/24502982

 

8) Citicoline (CDP-Choline)

 

Citicoline: update on a promising and widely available agent for neuroprotection and neurorepair. (Rev Neurol Dis. 2008)

https://www.ncbi.nlm...pubmed/19122569

 

9) Longvida Curcumin

 

Anti-Inflammatory Effects of Novel Standardized Solid Lipid Curcumin Formulations. (J Med Food. 2015)

https://www.ncbi.nlm...pubmed/25490740

 

10) Taurine

Mechanism of neuroprotective function of taurine. (Adv Exp Med Biol, 2009)

https://www.ncbi.nlm...pubmed/19239147

 

11) Folate, B12

 

Plasma Homocysteine, Vitamin B12 and Folate Levels in Multiple System Atrophy: A Case-Control Study. (Zhang S1, 2015)

 

https://www.ncbi.nlm...pubmed/26291976

 

 

There are a few brain formula supplements in the market such as “Neuro Optimizer”, formulated by a reputable company, which provides a good combination of certain antioxidants and amino acids that may support brain function. Ubiquinol CoQ10 and Omega 3 high in DHA may provide supportive action. Physiotherapy can also help to maintain the patient's mobility. 

 

I suggest you talk to your medical specialist before your father takes any supplements and vitamins since some of those like Vitamin B6 may interact with existing medications and current condition.

 

 

Edited by Pantheon, 27 May 2017 - 01:08 AM.

[Pantheon]

Decreased Coenzyme Q10 Levels in Multiple System Atrophy Cerebellum.

Barca E1, Kleiner G1, Tang G1, Ziosi M1, Tadesse S1, Masliah E1, Louis ED1, Faust P1, Kang UJ1, Torres J1, Cortes EP1, Vonsattel JP1, Kuo SH1, Quinzii CM2.

 

Abstract

In familial and sporadic multiple system atrophy (MSA) patients, deficiency of coenzyme Q10 (CoQ10) has been associated with mutations in COQ2, which encodes the second enzyme in the CoQ10 biosynthetic pathway. Cerebellar ataxia is the most common presentation of CoQ10 deficiency, suggesting that the cerebellum might be selectively vulnerable to low levels of CoQ10 To investigate whether CoQ10 deficiency represents a common feature in the brains of MSA patients independent of the presence of COQ2 mutations, we studied CoQ10 levels in postmortem brains of 12 MSA, 9 Parkinson disease (PD), 9 essential tremor (ET) patients, and 12 controls. We also assessed mitochondrial respiratory chain enzyme activities, oxidative stress, mitochondrial mass, and levels of enzymes involved in CoQ biosynthesis. Our studies revealed CoQ10 deficiency in MSA cerebellum, which was associated with impaired CoQ biosynthesis and increased oxidative stress in the absence of COQ2 mutations. The levels of CoQ10 in the cerebella of ET and PD patients were comparable or higher than in controls. These findings suggest that CoQ10 deficiency may contribute to the pathogenesis of MSA. Because no disease modifying therapies are currently available, increasing CoQ10 levels by supplementation or upregulation of its biosynthesis may represent a novel treatment strategy for MSA patients.

 

https://www.ncbi.nlm...pubmed/27235405

 

Edited by Pantheon, 28 May 2017 - 09:26 PM.

[plastikman]

Thank you very much for information Pantheon.

We were already trying Coq10 supplement from one year ago (1200mg daily) and now get and started curcumin and the "nuero optmizer" formula as daily food supplement.

I have also looked at some interesting researches with two off the label drugs:

 - Nilotinib.

 - Exenatide (byetta).

We talked our local doctor about them but he has no information and not prescribed any.

I wonder if someone with this or other alfa-syn related diseases is taking any of them and has more data.

Thanks again.

 

[Pantheon]

Nilotinib with the brand name Tasigna by Novartis was received approval from the European Union in 2010 but for Chronic Myeloid Leukemia. Tasigna (Nilotinib) is not prescribed for Parkinson’s or any other Neurodegenerative disease. The clinical trial is currently in phase II, designed to evaluate the safety and tolerability of low doses of nilotinib, the efficacy on disease biomarkers, and clinical outcomes in people with mid-stage Parkinson’s disease. Therefore it may take years for Nilotinib to receive approval if the drug proved to be safe and effective (Estimated Study Completion Date: July 2020).

 

Phase I Clinical Trial:

Nilotinib Effects in Parkinson’s disease and Dementia with Lewy bodies

http://content.iospr...sease/jpd160867

 

Phase II Clinical Trial :

Impact of Nilotinib on Safety, Tolerability, Pharmacokinetics and Biomarkers in Parkinson's Disease (PD Nilotinib)

https://clinicaltria...how/NCT02954978

 

Tasigna (Nilotinib) is currently available in European Union and therefore in your home country Spain, however I consider it highly unlikely that a Neurologist or any other licensed physician will prescribe Tasigna (Nilotinib) for a disease other than the one that is intended for. Lacking other alternatives some Patients in medium to advanced stages of PD and other neurodegenerative diseases have been experimenting with un-prescribed low dosages of Nilotinib with the hope that the drug will delay the progression of their disease; however those patients do that at their own risk as the drug comes with serious warnings and safety precautions and its efficacy has not yet been assessed (phase I trial included a small number of patients and no control group).  I suggest that you talk to a specialist that will be able to provide guidance and assess the risks of taking this drug.  Possible risks include prolongation of QT interval, hypokalemia or hypomagnesemia. However dosages of Nilotinib in clinical trials on Parkinson's disease are much less than those used for Myeloid Leukemia (Tasigna). More detailed information you may find on the manufacture’s page at: https://www.hcp.nova...roducts/Tasigna

 

Some members on this forum who have been experimenting with Nilotinib administration have posted their experiences and concerns.  You may use keywords such as “Nilotinib Brain Health” and “Nilotinib R&D results” to search and browse the relevant topics. However I consider that patients who take this drug should do it under the supervision of a specialist and take all safety precautions.

 

You may also be interested in my recent topic on this forum of “Natural Alternatives to Nilotinib BCR-ABL Tyrosine Kinase Inhibitors", including certain Flavonoids and Polyphenols”

http://www.longecity...se-inhibitors/ 

 

Edited by Pantheon, 24 June 2017 - 11:32 PM.