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Archive for the ‘Imukin’ Category

The 27th of August 2013 is a Wednesday.

I have have gotten my very first package of Imukin from the pharmacy. I’ve hung up the phone call with doctor Harald for the last instructions. We are ready for the first shot.

I lie down on the sofa with pillows under my knee. I don’t know how this injection will feel like so I make sure I’m comfortable. My father, Morten and my mum is in the room. My mum is nervous. She will do the injection. As an experienced nurse she is never nervous before an injection, but it’s different with us kids. She always gets nervous treating us even now that we are not kids anymore.. She never shows it. She is the calmest person on the ouside as she fixes the syringe and desinfect my thigh. (more…)

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My name is Gunnhild Lystad, I’m now 40 years old. In 2009 I was diagnosed with friedreich’s ataxia (FA). In 2011 I started my blog because I wanted to share my “insider” tips to others being a physiotherapist myself and living with this condition. In august 2013 I stared taking Imukin injections. In October I was certain about the positive effects I had and decided to share it on my blog. The years to follow more people started taking Imukin if they could find a doctor willing to prescribe it and if they could afford it. Two big “ifs”. Here I will sum up some of the feedback I’ve got from others taking Imukin. In the end of the document you’ll find more recent updates and finally my own update.

 

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If we dont have enough people with FA willing to participate in studies, research will make a stop and it will take –  f o r e v e r – to find a cure! Who with FA feels like they have time to wait any longer then absolutely necessary?

Do you want a cure for FA?

If your answer is «Yes!!!!»: You must register here and be willing to participate in research (more…)

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Below I have collected some of the feedback I’ve got from people taking interferon gamma (Actimmune/Imukin) These improvements  can not be measured with the FARS scale, from what I can recall. I wanted to post this to show why the FARS scale alone should not be the only measure to decide if a drug has effect for FA or not.

We can not afford that these effects are not taken into consideration! Please find a way to measure this.

(If you have any more affects like these, please please please write me a comment so I can update the list. If we want changes, we need to say something)

 

pes cavus snu

Before Imukin

etter pes cavus 1

After 7-8 months on Imukin

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Thank you for all the replies you have sent me so far. It is quite interesting to read, right? I hope we will keep getting many more replies. Comment below or send me an email: fafysio@extremeliving.no

Thank you so much dear translators for helping me spreading the word; Ahmet Sami Konca, Marisa Condurso de Nohara, Marilou Mertens, Dorival Ruiz, Amalia Maranhao and Michela Mogavero.

Also a big thank you to the amazing Gian Piero Sommaruga for coordinating translations and always for your great support and patience.

If you are not following the Babel Family group on Facebook than you really must go there and like the page https://www.facebook.com/groups/52801039038/

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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

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Have you tried Interferon Gamma?

 

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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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?

 

 

 

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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

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