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Today I took another SARA score at my doctors and it is very exciting. In this score the best result is 0 – zero.

31.08 – scored 9,75 (right before my first injection)

26.10 – scored 7,2

25.01 – scored 5,1

Today I was able to take some steps  in tandem walk and stand for longer in tandem stance. It didn’t look pretty, that’s for sure, but I did it. Imukin and Thiamine seems to be a good match ❤

Many people are very curious about Thiamine. If you have tried it, do you mind leaving me a comment below? Your experience is important because it can help others. Thank you 🙂

Here is more about my own experience, dosages, link to reasearch and so on.

It’s been to long since I posted a picture of my cat, I know. Her she is 🙂

fafysio-extremeliving

 

Happy new year everybody 🙂
I just have to start this new year talking about interferon gamma. As you see from the comments on my blog and all over Facebook, people who are taking Imukin (Interferon gamma, Actimmune) does not understand why the Horizon study was ended. Many people experience improvements that are significant to their health and quality of life.

I’m sure that 100% of all FA patients want to have a treatment that improves symptoms and quality of life while we are waiting for the cure.

So should we let a statistics program decide that these improvements are not good enough? Should there be other measurements used in research that can detect these changes?  If we want something we need to speak up.  At least what we should do is gather all the IFG-stories for everyone to see. I know that there are many more people out there that haven’t responded to my questions yet. Please, we would all love it if you could share your experience with the rest of us.

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I know this weekend has been filled with disappointment and sadness in many homes all around the world. The news that Horizon ended their study on interferon gamma struck the FA-family hard last Thursday. The research on using interferon gamma as a treatment for FA “did not meet its primary endpoint of a statistically significant change from baseline in the modified Friedreich’s Ataxia Rating Scale (FARS‐mNeuro) at 26 weeks versus treatment with placebo.”

I cried. Not because it changes anything for me. I have the medication I need to keep going. My heart broke thinking about all the children and people with FA that never will be able to test if IFG will improve their life or not.

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I’m here :)

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.

thiamineThe 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?

 

 

 

Do you like what you’re reading? I love it!

Thanks to the research team at Akershus University Hospital in Oslo with clever doctor Wyller in charge and not least, thanks to amazing Emilie, the scientific article about Imukin and cardiomyopathy is now published. This is a case study so the research is done one person, but pretty promising right?

You can download the article here: Wyller et al_Imukine for cardiomyopathy in FRDA_Int J Cardiol 2016

In my last blog post i promised you I would start focusing more on exercising. Now I’m back in the gym with my very own physio! That is so cool 🙂 No matter if you are healthy or have FA, if you don’t use it you’ll lose it. It is time for action! Updates will come.

fysio fys2

Quick update

Yes I am here and everything is good 🙂

It has been very long since my last blog post and the reason is:

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I’ve had som surgery done to my face… No! Just kidding! Who else love snap?? 😀

The reason is WORK. This last year has been quite stressful and busy so I can’t seem to find the time to update my blog.

I am still taking 250 mcg of Imukin. I have taken this dosage for a year now. My blood tests are completely normal and I have no side effects. Despite the stressful times this past year I never seem to get exhausted like I used to before Imukin. I have been sitting and typing on my computer with not much exercise for a very long time and that makes me stiff and sore, and my walking is not great at the moment so;

My goal in the very near future is to work less, rest more and exercise. Anyone else? 😉

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This is basically what I’ve been doing since my last update 🙂

The mothers of Ilva and Emilie just told me some amazing news. I will just post their comments here and let them speak for themselves.

This is from Therese, mother of Ilva (15). Started on Imukin February 2014:

“We were at the yearly check up at the hospital in Kristiansand today. The neurological examination shows no progression of the disease since one year ago!!! The neurologist meant it was an effect of the interferon gamma treatment! It was just lovely to see that Ilva were able to perform these tests so well. Also it was very exciting for her to have a confirmation that all the injections are worth it.”

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The 27th of August 2013 i took my very first injection of Imukin.  The next day after lunch I had two meetings in the city. Normally that meant I would be exhausted the rest of the day and maybe the next day after. In the elevator after our first meeting Morten looked at me and said; “Your speech is better!”. At the end of the day we were amazed about how I managed the two meetings with lots of talking, standing and walking without being exhausted. We talked about; This must be what placebo is like!

If this was placebo I really loved placebo! 🙂

Two years later the improvements still lasts and placebo can not take the glory for my improvements anymore!

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I am sure you remember the blog post I wrote about Emilie in Cardiomyopathy and Imukin – promising news!

Today is the release of her first single Unbreakable! I downloaded it on iTunes this morning and I’ve kept listening to it over and over. Living with friedreich’s ataxia is extreme… That is why I called my blog Extreme Living. I cannot imagine how it is like growing up with this monster, as FA really is… It takes a lot of strength that is for sure. You can really feel the strength behind this song!

emilie mimmi austad andersen unbreakable imukin

Emilie is now on 150 micrograms of Imukin. She feels stronger and she has started to excercise. She has always been very strong but now she is doing pull-ups! Early this summer she was at a concert and she tells me that for the last hour she was standing the whole time singing and dancing!

As you remember from my last post, Emilie has quite severe cardiomyopathy. Today she tells me that the heart markers keeps improving! How is that for amazing news!! ❤ ❤ ❤

She can still be nauseous and have a headache as a reaction to the drug, but she is not as tired as she felt in the beginning of the treatment

You should really download her single!  It is available all around the world on iTunes and Spotify. You’ll find it here:

iTunes:https://itunes.apple.com/no/album/unbreakable-single/id1027446403

Spotify: https://open.spotify.com/album/1rX98uly17AK2ej9YiEjYB

Emilie is one of the two vocals you can hear, she wrote the lyrics and has pretty much had the creative control over the entire production.

Emilie, you inspire me! Thank you for making this song and for sharing your story with us! ❤

Unbreakable

By Emilie Mimmi Austad Andersen

 

When it comes down to it

I must admit

I’ve been through a lot

But I never gave up

They tried to knock me down

But I am stronger than they’ve ever known 

 

Now I don’t care at all

Now I’m picking up the pieces

And I’m moving on

I’ve cried so many tears

But I’m over it

I’m unbreakable x2

Yeah, I’m unbreakable

 

They enjoyed the view of me laying down

Breaking into pieces

Screaming for help

My scars and bruises have healed

I’m getting up

With a smile on my face and it won’t fade

 

Now I don’t care at all

Now I’m picking up the pieces

And I’m moving on

I’ve cried so many tears

But I’m over it

I’m unbreakable x2

Yeah, I’m unbreakable

 

Never ever happen again x2

 

Cuz I made it through

And I’m standing here

With my head up high

 

But now I am raising 

You are falling

Cuz I made it through

And I’m standing here

With my head up high

 

I’ve cried so many tears

But I’m over it

 

I’m unbreakable x2

Yeah, I’m unbreakable x2