Many people contact me lately checking to see if I’am alive. Yes I am! 🙂
I’ve been taking Imukin for over three years now. I still feel great. The improvements I experienced during the first year has been stable.
So to another possible treatment for FA: thiamine or vitamin B1. This study was published earlier this year:
https://www.ncbi.nlm.nih.gov/pubmed/27488863 by Roberto Fancellu et al with really promising results.
Similar to Imukin this medicine is already out there so I asked my doctor If I could try it. It is a vitamin so it is very different from Imukin and there is rarely any side effects. My doctor did some research himself and then he said yes. So at the end of August I had my first injection of Tiacur. (Vitamin B1/Thiamine).
My doctor took a SARA test before the first injection. It was 9,75
I used to have muscle cramps in both my legs many times every night. They are gone! Or almost. I have on or two cramps per week in one leg at the time. Much better than cramping in both legs 4-6 times every night! I am also more coordinated and have more control at the exercises I do at the gym. Just ask my physio 🙂
After two months my doctor took another SARA and the score was 7,2.
With SARA 0 (zero) is the best score and 40 is bad.
He noticed that all coordinated movements was improved as well as my speech. Fantastic right?! Balance and standing exercises has not improved at this moment.
The injections are intra muscular so they are a little bit unpleasant. I have my mother or Morten doing the injection.
The injection site is in the glutes or in the deltoid so it is a bit tricky to do it myself. The dosage is 100 mg two times per week. I feel no side effects or reactions.
I really hope these improvements will last, and perhaps there will be more improvements. The study from Italy showed lasting effects after three years. Fingers crossed!
Thiamine is not as expensive as Imukin. The price per bottle is 423 NOK and I take two bottles each week. (Well, still expencive).
This is the medicine I take:
Idebenone: 1500 mg each day
Imukin: 250 micrograms three times per week
Thiamine: 100 mg two times per week
That means five needles per week. Is it worth it? YES.
Are any others taking Thaimaine? How do you feel?
My girls are taking thiamin but as tablet. one per day, 300 mg. I don’t get it for them as injections (and also not paid.. and it’s, once again, not affordable here). The brand Name in switzerland is benerva.
they are also taking idebenone, the older one 900 mg, the younger one 750 mg.
and they are taking acid folic, 5 mg per day! I heard it’s good in combination with thiamin… so I give it a try.
not sure if there is an improvement, I’m already happy if there is no worsening…
they are taking thiamin only since one month, so maybe there will be some improvements coming. maybe not… we will see…
my younger daughter thinks, that med-cocktail gives her more energy…
But, as I always think, I don’t know how it would be without those tablets, so I can’t say if they are helping or not…
Thanks for sharing Birgitte 🙂 Fingers crossed ❤ Perhaps we will have the results from the interferon gamma study within two-three months. Exciting days!
Some market news (Horizon Pharma)
http://www.insidermonkey.com/blog/horizon-pharma-plc-hznp-could-double-its-annual-sales-potential-on-this-near-term-catalyst-485896/?yptr=yahoo
Hi Brigitte,
My oldest daughter (14y) has been diagnosed (DNA) 2 months ago.
She takes vitamin E and Q10.
Since november 8th (after reading Gunnhilds blog:-) ) she takes the same dose of 300mg Benerva as your girls.
I do not know if it’s a coincidence, but it was the first time in a month that we shouldn’t wake her up. It seems like she has more engergy right after on day!
I hope the best for your girls and for all the patients dealing with this disease.
I think 2017 will be an important year (Imukin) for FA and that there is more possitive news coming in the next years….
Hello Gunhild glad to hear good news from you im tryning to get this days b1 but can you please exactly tell me where to inject please ?
Look at this link and the picture under “Buttocks”
Pleas, you need to get advice from someone professional with this injection. It is serious business. Ok? 🙂
Brigitte Furter, please tell me these dose 300mg /day is recomendet for doctor? How old are your girls? My son is 14, i want gave him tablets, no ingection but here in Bulgaria no special doctor for FA.
…………..
Hi I am writing from Greece and my fa group is interested in your progress. My son has fa. His first symptoms started at the age of 8 was diagnoed at 14 and is now 22. MY EMAIL IS artemissia1972@gmail.com wiould be delighted to exchanged experiences.
So I have been taking thiamine injection for 3 years. After 2 years, I changed the dosage to 90 mg 3 times per week + vitamin cocktail + idebenone.Interferon gamma is not available in Canada. Looking to take deferiprone in the next year aswell. How are our liver enzymes?
ps tl everyone: from pill,, we only digest 5 mg of thiamine in every tablet of 100 mg
hello, please write more details about you, how old he began to inject thiamine what was then your physical condition, is there a change after three years thiamine injections?
Have anyone experience with this freely available drug?
https://clinicaltrials.gov/ct2/show/NCT01921868?term=ataxia&cond=%22Friedreich+Ataxia%22&rank=15
I have, gives me energy too also in a FA MRI heart study for 8 year now a very little progression or none it my heart.
http://friedreichscientificnews.blogspot.be/2016/12/horizon-pharma-plc-announces-topline.html
http://friedreichscientificnews.blogspot.be/2016/12/horizon-pharma-plc-announces-topline.html 😦
http://friedreichscientificnews.blogspot.de/2016/12/horizon-pharma-plc-announces-topline.html
😦
[…] Here is more about my own experience, dosages, link to reasearch and so on. […]
should take other thing with it http://lpi.oregonstate.edu/mic/vitamins/thiamin