Search
Search
About
Log in
Join
Experiences with
Primary ciliary dyskinesia (PCD)
Posts
Communities
727 public posts
Filter results
help , fatigue, shortness of breath
i am stuck Age 50 Symptoms since 2020 Diagnosed 2022 Started on C/L 100/25x3 Worked well for 6 months Started mild dyskinesia after 9 months, now it is wearing off fast,Ii get severe fatigue so changed it to half pill every 3 hours, dyskinesia is less but fatigue, wearing off dyspnea is killing
i am stuck Age 50 Symptoms since 2020 Diagnosed 2022 Started on C/L 100/25x3 Worked well for 6 months Started mild dyskinesia after 9 months, now it is wearing off fast,Ii get severe fatigue so changed it to half pill every 3 hours, dyskinesia is less but fatigue, wearing off dyspnea is killing
Rupa88
in
Cure Parkinson's
5 days ago
‘I couldn’t walk’: GP’s personal story of vitamin B6 toxicity
‘A review of the patient’s vitamin B6 intake is recommended, paying close attention to potential sources such as multivitamins and magnesium and zinc products, particularly when taken in combination,’ https://www1.racgp.org.au/newsgp/clinical/i-couldn-t-walk-gp-s-personal-story-of-vitamin-b6
‘A review of the patient’s vitamin B6 intake is recommended, paying close attention to potential sources such as multivitamins and magnesium and zinc products, particularly when taken in combination,’ https://www1.racgp.org.au/newsgp/clinical/i-couldn-t-walk-gp-s-personal-story-of-vitamin-b6
Farooqji
in
Cure Parkinson's
5 days ago
One whole tablet or two halves?
According to a new American study, taking two half tablets instead of one whole tablet of the C/L medication reduces fluctuations in the active substances in the blood and thus the risk of movement disorders such as dyskinesia. A combination tablet typically works for two to four hours - for extended-release
According to a new American study, taking two half tablets instead of one whole tablet of the C/L medication reduces fluctuations in the active substances in the blood and thus the risk of movement disorders such as dyskinesia. A combination tablet typically works for two to four hours - for extended-release
Esperanto
in
Cure Parkinson's
9 days ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
My current usage of C/L
I take 1 25/100 and 2 rytary(48.75/195) at 8am, 3 rytary at 11am, 2 rytary at 2pm and 2 rytary at 5pm. I have very little off time. I was diagnosed two years ago at age 51 but it probably had Parkinson’s since I’ve been 40 years old. I was curious if I could get your opinion on if you guys think this
I take 1 25/100 and 2 rytary(48.75/195) at 8am, 3 rytary at 11am, 2 rytary at 2pm and 2 rytary at 5pm. I have very little off time. I was diagnosed two years ago at age 51 but it probably had Parkinson’s since I’ve been 40 years old. I was curious if I could get your opinion on if you guys think this
BPW1
in
Cure Parkinson's
22 days ago
Iodine, anyone?
Researching Iodine supplementation. Theres a couple of fascinating books on the subject. Iodine is a very powerful element in regards to its effect on the human body. It seems like most of the people of the world are Iodine deficient Adding Iodine to salt, according to the books, does absolutely zilch
Researching Iodine supplementation. Theres a couple of fascinating books on the subject. Iodine is a very powerful element in regards to its effect on the human body. It seems like most of the people of the world are Iodine deficient Adding Iodine to salt, according to the books, does absolutely zilch
bassofspades
in
Cure Parkinson's
23 days ago
apomorphine, anyone on this?
Hi all, was offered apomorphine with pump not injection. is anyone using this and has it made a difference i know everyone is different just trying to get a bit of perspective before i start it? been having issues with oral forms of medication either dyskinetic on or cant move off not much in the middle
Hi all, was offered apomorphine with pump not injection. is anyone using this and has it made a difference i know everyone is different just trying to get a bit of perspective before i start it? been having issues with oral forms of medication either dyskinetic on or cant move off not much in the middle
Todd-pw
in
Cure Parkinson's
23 days ago
Bang for your buck
Supplements, medication, procedures Can someone tell me what supplements should be used with Parkinsons Among the various therapies that have shown at least some effect in the animal and/or human model are Carbadopa/Levadopa Actylcholine Actigal/Ursolic acid Adderil (amphetamine) Alcohol Alpha
Supplements, medication, procedures Can someone tell me what supplements should be used with Parkinsons Among the various therapies that have shown at least some effect in the animal and/or human model are Carbadopa/Levadopa Actylcholine Actigal/Ursolic acid Adderil (amphetamine) Alcohol Alpha
heartinmotion
in
Cure Parkinson's
26 days ago
Has anyone had success reducing levodopa-induced Dyskinesias after using Dr. Laurie Mischley’s regimen? (High DHA Fish Oil, Citicholine)
I would like to know if anyone has been successful in reducing or eliminating levodopa-induced dyskinesias after using Dr. Laurie Mischley's regimen (High DHA Fish Oil and Citicholine). There were quite a number of posts here about 2 months ago. I took the fish oil one extra month because there was
I would like to know if anyone has been successful in reducing or eliminating levodopa-induced dyskinesias after using Dr. Laurie Mischley's regimen (High DHA Fish Oil and Citicholine). There were quite a number of posts here about 2 months ago. I took the fish oil one extra month because there was
PNWpWp2014d
in
Cure Parkinson's
1 month ago
question about macuna
hi Few questions. 1. Does macuna capsule must take with benserazide or carbidopa? 2. If so, i am taking 100mg levodopa/25mg benserazide(Madopar) if I want to add 400mg mucuna15% levodopa ; so I need to take extra benserazide? thx
hi Few questions. 1. Does macuna capsule must take with benserazide or carbidopa? 2. If so, i am taking 100mg levodopa/25mg benserazide(Madopar) if I want to add 400mg mucuna15% levodopa ; so I need to take extra benserazide? thx
limcheeese22
in
Cure Parkinson's
1 month ago
How Much Carbidopa Levodopa After 5-10 Years? Any other meds?
I am about to "celebrate" the six year anniversary of my Parkinson's disease diagnosis. I currently take five 25/100 Carbidopa Levodopa tablets per day, usually around 9:00 a.m., noon, 3:00 p.m., 6:00 p.m., and 9:00 p.m. although timing varies slightly from day to day. Lately, I have noticed that I
I am about to "celebrate" the six year anniversary of my Parkinson's disease diagnosis. I currently take five 25/100 Carbidopa Levodopa tablets per day, usually around 9:00 a.m., noon, 3:00 p.m., 6:00 p.m., and 9:00 p.m. although timing varies slightly from day to day. Lately, I have noticed that I
jimcaster
in
Cure Parkinson's
1 month ago
Have any one heard or tried L-Tyrosine ?
My son bought L-Tyrosine for me, and said it helps PD by research, it can help you make dopamine . It is a kind of Amino Acid. My doctor said that you can try it, but, should not take it with levodopa the same time, should take it apart from levodopa. Has someone tried it ?
My son bought L-Tyrosine for me, and said it helps PD by research, it can help you make dopamine . It is a kind of Amino Acid. My doctor said that you can try it, but, should not take it with levodopa the same time, should take it apart from levodopa. Has someone tried it ?
Grandsonlover
in
Cure Parkinson's
2 months ago
AbbVie’s Produodopa approved by SMC to treat Parkinson’s disease patients in Scotland
AbbVie’s Produodopa (foslevodopa-foscarbidopa) has been accepted by the Scottish Medicines Consortium (SMC) for use within NHS Scotland to treat advanced levodopa-responsive Parkinson’s disease (PD). PD patients with severe motor fluctuations and hyperkinesia or dyskinesia when previous available combinations
AbbVie’s Produodopa (foslevodopa-foscarbidopa) has been accepted by the Scottish Medicines Consortium (SMC) for use within NHS Scotland to treat advanced levodopa-responsive Parkinson’s disease (PD). PD patients with severe motor fluctuations and hyperkinesia or dyskinesia when previous available combinations
Farooqji
in
Cure Parkinson's
2 months ago
Ribonucleic Acid (RNA) and its Role in Parkinson’s Disease (PD) and Levodopa-induced Dyskinesias
https://www.apdaparkinson.org/article/rna-research-krithy-irmady/
https://www.apdaparkinson.org/article/rna-research-krithy-irmady/
Farooqji
in
Cure Parkinson's
2 months ago
overdose
I was diagnosed Feb 1 2024. Is it possible to overdose on Co-Beneldopa 200 MG. I take three doses a day [3 x 200 mg]. I try to take them at 8-hour intervals but often screw up, as my memory is so bad. Any side effects of Co-Beneldopa?
I was diagnosed Feb 1 2024. Is it possible to overdose on Co-Beneldopa 200 MG. I take three doses a day [3 x 200 mg]. I try to take them at 8-hour intervals but often screw up, as my memory is so bad. Any side effects of Co-Beneldopa?
disilusioned
in
PSP Association
2 months ago
NE3107 added to levodopa enhances motor, non-motor benefits
“These data suggest that NE3107 as an adjunct therapy to levodopa may hold promise in ameliorating specific non-motor symptoms of Parkinson’s Disease, particularly in sleep/fatigue and restlessness of the legs,” Joseph Palumbo, MD, BioVie’s chief medical officer, said in a company press release. https
“These data suggest that NE3107 as an adjunct therapy to levodopa may hold promise in ameliorating specific non-motor symptoms of Parkinson’s Disease, particularly in sleep/fatigue and restlessness of the legs,” Joseph Palumbo, MD, BioVie’s chief medical officer, said in a company press release. https
Farooqji
in
Cure Parkinson's
2 months ago
Citicoline: "patients treated with citicoline experienced a significant worsening 45 days after the medication was discontinued". Updated.
This statement appears in a review that was published here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10548481/ It is attributed to a study published in a book on citicoline in 1985. I've been unable to locate a copy of this book either online, for sale or to borrow from a library. Book: Zappia
This statement appears in a review that was published here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10548481/ It is attributed to a study published in a book on citicoline in 1985. I've been unable to locate a copy of this book either online, for sale or to borrow from a library. Book: Zappia
park_bear
in
Cure Parkinson's
2 months ago
Sebum?
So PD causes seborrhea. And seborrhea causes pimples. I get pimples under the hair line. Coal Tar shampoo is the standard treatment for seborrhea. Using shampoo whole-body gets a bit pricey. Using a kitchen scrubber sponge as well might help. But because coal tar is very drying, it stimulates
So PD causes seborrhea. And seborrhea causes pimples. I get pimples under the hair line. Coal Tar shampoo is the standard treatment for seborrhea. Using shampoo whole-body gets a bit pricey. Using a kitchen scrubber sponge as well might help. But because coal tar is very drying, it stimulates
kaypeeoh
in
Cure Parkinson's
2 months ago
foot flop
I take sinamet comtan and amantadine. Recently my foot flop has gotten worse. I can’t tell if I should take my medicine sooner than usual.
I take sinamet comtan and amantadine. Recently my foot flop has gotten worse. I can’t tell if I should take my medicine sooner than usual.
Blake0488
in
Cure Parkinson's
2 months ago
Recent study on Levodopa
Read the article at https://www.tandfonline.com/doi/full/10.1080/14740338.2023.2227096 Expert opinion No strong evidence exists to support use of a specific adjunctive treatment for improving Off time. Only one medication has demonstrated improvement in dyskinesia in levodopa-treated PD patients
Read the article at https://www.tandfonline.com/doi/full/10.1080/14740338.2023.2227096 Expert opinion No strong evidence exists to support use of a specific adjunctive treatment for improving Off time. Only one medication has demonstrated improvement in dyskinesia in levodopa-treated PD patients
pdpatient
in
Cure Parkinson's
3 months ago
Easy-to-use inhaled levodopa system readying request for US approval
That’s according to results from a company-sponsored clinical trial (NCT06037590) comparing the pharmacological properties of Levodopa Cyclops against those of Inbrija, an approved inhaled powder formulation of levodopa developed by Acorda Therapeutics. “This randomized cross-over trial of Levodopa
That’s according to results from a company-sponsored clinical trial (NCT06037590) comparing the pharmacological properties of Levodopa Cyclops against those of Inbrija, an approved inhaled powder formulation of levodopa developed by Acorda Therapeutics. “This randomized cross-over trial of Levodopa
Farooqji
in
Cure Parkinson's
4 months ago
1
2
...
37
Next page
10
20
30
Filter results
Clear filters
Posted in
All communities
Cure Parkinson's
476 results
Endometriosis UK
76 results
Thyroid UK
34 results
View top 10 communities
Sort by
Most Relevant
Newest