It has been months since my last blog post. So much has been going on and I have been waiting a while to tell you some very interesting news. Since last summer I’ve been in touch with Prof. Roberto Testi who is chair of Immunology Department of Biomedicine and Prevention Rare Disease Section School of Medicine University of Rome “Tor Vergata”.
I saw his article “Interferon gamma upregulates frataxin and corrects the functional deficits in a Friedreich ataxia model” and contacted him right away to get more additional info. Every research that shows an increase in frataxin protein levels is veeeeery interesting to me, and there is so much high tech research going on at the moment. What caught my immediate interest with this particular research is that interferon gamma is already an approved medication. The indication for using this medication is something completely different than friedreich’s ataxia, but it is there! It has already been tested for safety and side effects on humans.
I’m not a very patient person. As soon as I read this article I decided that if there is any way that I can try this treatment today, I would do just that. A year passed… I’ve had discussions with doctors, family and friends about risks, side effects, cost… In May this year Morten and I flew to Rome for a meeting with Testi at his research lab. We had a very good and informative meeting with the professor and met some of his co-workers. Back in Norway the discussions continued and finally we made the decision; Let the treatment begin!
Before I started I had a FARS scale done and blood samples taken to measure my levels of frataxin. This was done by my neurologists. One of my doctors prescribed the medication (called Imukin here in Norway) and my mother who is a nurse taught us how to do the injections subcutaneously. The dosage is 100 micrograms three times per week.
I took the first shot 27th of August. I had some flulike symptoms after one hour with some chills and almost feverish feeling in my head. I also had some muscle aches. The side effects were so insignificant that I fell asleep and woke up the next morning feeling just fine. The side effects after the injections then became weaker after a week or two and now there are almost no reaction at all.
I felt better already the first day. Family and friends told me they could hear that I spoke better. Then I started realizing that I had more stability when I was standing and walking. I could brush my teeth standing up without supporting myself on the sink or I could make dinner standing up without needing a chair to sit on. Then came the energy. That is the most remarkable difference. I used to feel so tired all day every day. Now I have energy! It’s like I finally figured out how to change my empty batteries. Other things that feels better; walking up and down the stairs, swimming, breathing (!) and turning around in bed.
Both my sisters are witnessing the first injection live via skype!
Ok, it could all have been placebo. My mind is quite motivated for me to get better. The first few weeks I didn’t dare to talk so much to others about how I felt. Six weeks later I’m beginning to let myself believe it is more than placebo. Don’t get me wrong, I really love placebo and find it very fascinating, but we would all love it so much if there were anything out there that could put on the breaks on the monster, friedreich’s ataxia, long term.
Since the beginning I’ve felt gradually better. I felt a bit up and down for the first few weeks but then I’ve just felt better. So what is it by Imukin that makes me feel better? Is it the increase in frataxin protein or is it the direct effect that interferon gamma has on the neurons? Will I continue getting better, will I get back to “normal” again after a while, are there any risks I can get serious side effects later, how large dose should I take and for how long…? Is the Imukin actually fixing something or just putting on the brakes for a while? Is it all in my head?There are so many unanswered questions at the moment. No one knows, yet. Testi and his lab of researchers in Rome is doing research on this as we speak and also there is one trial coming up in the US on interferon gamma.
I’ve had one drawback so far. Last Friday I had a two hours thai massage… I thought that sounded lovely. Apparently that was too much for the system to handle. Within one hour after the massage I fell all the way back to the time before I started on Imukin. At least it felt that way; I had slurred speech like a drunk, had so much ataxia that Morten needed to support me when I walked even indoors and I felt totally out of energy. I was heartbroken. Is this how it really should be like? Was everything ruined just now? It took me three days to get better and yesterday I was all good again. What a relief!!
Feeling better raises so many new thoughts in my head. You know, I’ve realized by now that I wont get better, but only worse. The Gunnhild that I had a year ago is gone and will never come back. Then I start getting better and I get a taste of hope and dreams again. Amazing and so incredibly scary at the same time! Interferon gamma as a treatment for FA can be many years ahead of us still. The research is following a strict protocol to get the medication approved for the treatment of FA patients. When (if) that day comes in Norway it means we will not have to pay for it ourselves. By now I pay for everything myself.
The nurse is ready, the sisters are ready and I am ready…let’s go!
In December will have another FARS scale done by my neurologists and also a new blood sample to measure frataxin. This is so exciting! I guess it dosn’t matter so much to the doctors I say that I feel better. They like much more to use objective measurements. Fingers crossed everybody! If they can’t measure any changes by then and if the research done in Italy and USA doesn’t lead anywhere I still have learned a lot from this experience.
Meanwhile waiting for the cure to come there should be put some effort in finding some treatment that aims to increase the energy levels in FA patients. Everything gets easier to handle with some energy. Maybe it could be EPO, steroids, Imukin…. Just find us something! (Certain sports communities knows all about this I guess…)
There are so many things to discuss about this subject. I have many thoughts and maybe others have questions? Have others tried interferon gamma and can share your own experiences with me? This blog post is already getting very long so let’s end this one here.
Finally, I just have to say how much I admire and love all of those who raise money and awareness for FA out there and all the incredible researchers who are using their brilliant minds and knowledge to find a treatment for FA. Without having met you, still you are some of the most important people in my life!! Thank you!
Så bra at det virker Gunnhild! Håper at prøvene viser det også. Jeg heier på deg! Klem
Takk :):)
Kjempebra! Lykke til Gunnhild! 🙂
Tusen takk 🙂
Reblogged this on Liv(e) in the US and commented:
Proud of my sister who refuses to take no for an answer and who has the guts to take charge of her own situation ❤
❤
Kryssar fingrane for deg, Gunnhild!
Takktakk 🙂
Så bra at det ser ut som dette virker. Heier på deg og håper at energinivået og formen fortsetter å stige!! Klem:-)
Takk for det 🙂
Tvi tvi…….heier på deg !!!!!
Tusen takk 🙂
I like what you’re doing. Thank you. Like yourself, I’m a Friedreich’s ataxia patient. And for years and years, I looked at any and all research associated with the disease. I even experimented with EPO. Eventually, I went to North Carolina State University to study neurobiology. But I gradually lost interest after I became a husband and father.
However…interferon gamma was the last thing that peaked my interest. I’m looking forward to your next FARS. Please, would you notify by email?
Thank you for commenting Jonathan. How did you feel after taking EPO? Did you feel any difference in energy?
I will try to notify you by e-mail. I will also write about it on my blog. You can enter your e-mail address in the right column of my blog and you will automaticly get a notification when I write a new post.
🙂
G
I registered my email with your blog. I’m looking forward to the updates.
In regards to my experience with EPO, it’s hard to say. It happened years ago before the in vitro research was published. And unfortunately, I had certain unrealistic expectations, so I didn’t take any objective measurements. Plus I wasn’t nearly as active then as I am now. I try to be as fit as possible with regular exercise. I’m sure I would notice some performance enhancement if I used EPO now… 😉
You are right, you would probably need to work out to enahnce your performance with EPO anyway 🙂 If you ever try it again keep me posted.
🙂
G
Hi G, thanks for your blog. I have FA and was diagnosed 20 years ago. I can totally recommend epo. I have been using it for 6 years and I’m still playing golf and bodybuilding. epo gives your muscles more oxygen and so they don’t fatigue as easily.
You must have heart and haemoglobin checks first as epo raises the red blood count and therefore blood viscosity.
My speech noticeably improved which I wasn’t expecting.
Thank you for your comment Mark 🙂 Sounds really good! I guess many people with FA are very interrested in your info about epo!
🙂
G
what is epo?
Hi barb 🙂 I’m not an expert on EPO but I found this link that might be useful http://onlinelibrary.wiley.com/doi/10.1111/jnc.12301/full
🙂
G
Go Gunnhild, I think this sounds incredibly positive, in fact the most positive bit of news I have heard in ages. Jai and I are sending you best wishes from Australia and hope this magic potion continues to help you. Jai is going to aim to swim the Manly Cole Classic for FA in February 2014, we will keep you posted! 🙂
Hi Kaija 🙂 Yeah, this is so exciting. I almost dont dare to believe it yet. Fingers crossed!! Give my love to Jai. He is such a hero! I will follow his next swim too, of course! Another opportunity to flex some muscle I hope? 😉
🙂
G
You are an inspiration Gunnhild. Not only for people with F/A but the families,
fundraisers and people searching for some light at the end of the tunnel.
Best wishes and keep your wonderful increasing energy positive and happy.
Lynn
Thank you for your kind words Lynn!
🙂
G
Gunnhild, you’re terrific! I love that you spoke with the professor beforehand and did the blood test to measure frataxin levels and had your FARS scale measured so there’ll be objective reports too. They won’t name you when the research is published but we’ll know it”s you!!
I’m fascinated by the idea that a Thai massage actually took you backwards. Strange huh? Do you do other exercise on a regular basis? Does this ever have a similar (overwhelming) effect?
I look forward to reading updates!
(BTW, if it’s a pacebo effect, maybe that’s better! We can all get M&Ms without a prescription!)
M&M’s as a cure for FA would be fantastic!! 🙂
If I overdo any of my exercises it seems to have a negative effect on the ataxia. Too heavy weights or too much cardio for example. Moderation seems to be the best for me. I have never experienced the same reaction before that I did with the massages. I learn later that she hadn’t had any professional training either. Anyways I guess that massages would also be good for me in moderation.
In Rome they also took a blood sample to see if my blood reacted positive when interferon gamma was added in the lab. The results came back positive two week later, so I know for sure that Imukin increases frataxin of my blood. The challenge is if the gamma interferon has a strong enough concentration when it reaches the damaged nerves in my body to make a difference in frataxin levels. That is what Testi in Rome and Lynch in USA are trying to figure out now. Exciting!
Sincerely,
G the lab rat 😉
Hey Ratty!
Do you have a date in December for when you’ll have your updated tests? Will you need to go back to Italy or is there someone local who understands what they need to test for.
Between now and then I’ll talk to my doctor and see if it would be possible for me to start trialling it too, but I’d wait until your first results in December before going ahead.
Cheers,
Wannabe-Rat 🙂
I don’t have a date yet but I would guess during the first two weeks. I think Prof.Testi will have some preliminary results before then too. You should absolutely check if it is possible for you to start too. Keep me posted!!
🙂
G
Thanks for sharing your experience with interferon gamma, Gunnhild! Very interesting and encouraging indeed! Lots of love,
GP (from Italy)
You are very welcome Gian Piero. I have high hope in you Italians now 😉
Thank you for your kind words.
🙂
G
You are inspiring
Do you suggest me taking interferon gamma.
I am desparate to get FA off. Recently I started taking 100mg thiamine injections after reading some reports
That sounds exciting Rishipal! Do you feel any difference? I absolutely would try interferon gamma if I were you. If you have the opportunity to try it you should discuss it with your doctor. I haven’t had any kind of complications so far but you should make sure you have understood the potential side effects before you get started. We are all so different. Keep me updated.
🙂
G
u’re first person what i know and are scandinavian and have AF ! u’have latin heredity ? how contact u ? by this blog ?
Hi Jerome 🙂 Thank you for commenting. No I dont have any latin in me that I know about. My FA gene comes from south of Europe so who knows.
🙂
G
Thank you for updating us about this, it sounds very encouraging. Would it be possible to find out if the interferon gamma can be used for someone who has Spinocerebellar Ataxia Type III?
Så utrolig bra! Dette er inspirerende 🙂
Jaaa 🙂
Gunnhild, This is very exciting! I have read every word of your post very carefully, and feel I must learn more, immediately. I am 46 years old, and my FA symptoms did not become apparent until age 40 (a very late onset). Many of my symptoms are very similar to yours, and I have been helped tremendously by many of your posts. But this is huge! I am flying to Philadelphia, PA this weekend to attend the 6th annual Friedreichs Ataxia Symposium (put on by the Children’s Hospital of Philadelphia). I hope to learn much more there!
Hi Renee 🙂 I’m so glad my blog can be at help for you. This interferon gamma research is really exciting indeed. Prof. Testi is going to be in Philadelphia this weekend so you will learn more directly from the researcher. That’s great! 🙂 Let me know how it is.
🙂
G
Hi Renee,
I am 45 years old and I have FA like you, a very late FA, my symptoms started a few years ago step by step but goes slowly. I Only know one person in France who started so late. Do you know more people with late onset?
We can keep in touch. 🙂 If you want email me: highway.friedreich@gmail.com
Good luck in Philadelphia.
Estimada Gunnhil:
Perdona que te hable en mi idioma, pero apenas sabría expresarme en otro. Soy paciente de ataxia de Friedreich, español, y quiero agradecer tu artículo… del cual he realizado una traducción para el blog “Ataxia y atáxicos”, por supuesto, respetando tu autoría y citanfo la “fuente original”: http://ataxia-y-ataxicos.blogspot.com.es/2013/10/interferon-gamma-y-ataxia-de-friedreich.html
Te deseo éxito en este tratamiento, y felicidad para tu vida.
Un abrazo.
Miguel-A, (desde España).
Thank you Miguel! 🙂 I had a friend of mine translating you comment and your intro to the translation you made. I see that you are worried people get false hopes. I completely understand. My audience is getting much bigger now and I am aware of my responsibility. I will write more about that it my next blog post. Thanks again for your kind words.
🙂
G
Gunnhild,
I´m Daniel from Argentina. My son Santiago (12) has AF. He was diagnosed 6 years ago. He takes idebenone and coenzim q-10. But nothing seems to help enough. Here we doesn´t hear nothing about Interferon gamma. Your expierence is very important to us. Thank you very much for post it! I´ll pray for you. Keep strong! And thanks again.
Keep in touch!
Hi Gunnhild,
Many thanks again for your blog and this last post. Thank you for your courage, I hope you find some improvement.
Much encouragement. 🙂
Hi Gunnhild. Many thanks for doing this and thanks for sharing with your FA-friends. Hope you are doing well. You are a true heroine! Tusen takk Gunnhild!
Tusen takk Mette 🙂 Hope this can be helpful for others too!
Hello. Thank you for sharing your experiences. I made a translation for a Turkish friend. Some other Turkish people may need translation too. So i want to share it here.
TURKCE CEVIRI
——————————————-
It has been months since my last blog post. So much has been going on and I have been waiting a while to tell you some very interesting news. Since last summer I’ve been in touch with Prof. Roberto Testi who is chair of Immunology Department of Biomedicine and Prevention Rare Disease Section School of Medicine University of Rome “Tor Vergata”.
Son blog yazımın üstünden aylar geçti. Çok fazla şey oldu ve bazı ilginç haberleri vermek için bir süredir bekliyordum. Geçen yazdan beri Biomedicine and Prevention Rare Disease Section School of Medicine University of Rome Üniversitesi Bağışıklık Bilimi Departmanı Başkanı Prof. Roberto Testi ile görüşüyordum.
I saw his article “Interferon gamma upregulates frataxin and corrects the functional deficits in a Friedreich ataxia model” and contacted him right away to get more additional info. Every research that shows an increase in frataxin protein levels is veeeeery interesting to me, and there is so much high tech research going on at the moment. What caught my immediate interest with this particular research is that interferon gamma is already an approved medication. The indication for using this medication is something completely different than friedreich’s ataxia, but it is there! It has already been tested for safety and side effects on humans.
“Interferon gamma upregulates frataxin and corrects the functional deficits in a Friedreich ataxia model” başlıklı makaleyi gördüm ve daha ayrıntılı bilgi almak için onla iletişim kurdum. Fraxatin protein değerindeki artışla sonuçlanan her araştırma benim için çoook ilgi çekici, ve şu anda yürütülen çok fazla yüksek teknolojili araştırma var. Bu araştırmada hemen ilgimi çeken şey, Interferon gamma’nın halihazırda onaylanmış bir tedavi olması. Bu tedavinin ölçümü Friedreich’in Ataxia’sından (ataxia=kas işlev bozukluğu) tamamen farklı, fakat olay da burada! Güvenli olması ve yan etkileri açısından insanlar üzerinde denenmiş.
I’m not a very patient person. As soon as I read this article I decided that if there is any way that I can try this treatment today, I would do just that. A year passed… I’ve had discussions with doctors, family and friends about risks, side effects, cost… In May this year Morten and I flew to Rome for a meeting with Testi at his research lab. We had a very good and informative meeting with the professor and met some of his co-workers. Back in Norway the discussions continued and finally we made the decision; Let the treatment begin!
Pek sabırlı biri değilimdir. O makaleyi okur okumaz o tedaviyi şu anda uygulamanın bir yolu varsa onu yapmaya karar verdim. Bir yıl geçti… Doktorlarla, ailemle ve arkadaşlarla riskler, yan etkiler, maliyet vs. hakkında tartıştım. Bu yılın Mayıs ayında Morten ve ben Roma’ya Testi(doktor) ile onun araştırma laboratuvarında görüşmeye gittik. Profesörle çok güzel ve bilgilendirici bir görüşme yaptık ve bazı yardımcılarıyla tanıştık. Norveç’e dönünce tartışmalar devam etti ve sonunda kararımızı verdik; tedavi başlasın!
Big hope in a tiny bottle…
Küçük şişedeki büyük umut…
Before I started I had a FARS scale done and blood samples taken to measure my levels of frataxin. This was done by my neurologists. One of my doctors prescribed the medication (called Imukin here in Norway) and my mother who is a nurse taught us how to do the injections subcutaneously. The dosage is 100 micrograms three times per week.
Başlamadan önce FARS ölçümümü yaptırdım ve fraxatin değerlerimi ölçmek için kan örneklerim alındı.Bu nörologlar tarafından yapıldı. Doktorlarımdan biri reçeteye ilacı yazdı (Norveç’te Imukin olarak adlandırılıyor ilaç) ve hemşire olan annem deri altından ne şekilde enjekte edileceğini öğretti. Haftada 3 defa 100 microgramlık dozlar halinde alıyorsun.
I took the first shot 27th of August. I had some flulike symptoms after one hour with some chills and almost feverish feeling in my head. I also had some muscle aches. The side effects were so insignificant that I fell asleep and woke up the next morning feeling just fine. The side effects after the injections then became weaker after a week or two and now there are almost no reaction at all.
İlk dozumu 27 Ağustos’ta aldım. Bir saat üşüme ve kafamda ateşlenme gibi nezleye benzer bazı belirtiler yaşadım. Biraz kas ağrılarım da oldu. Yan etkiler o kadar hafifti ki uyuyakaldım ve sabah uyandığımda gayet iyi hissediyordum. Enjeksiyonlar sonrasındaki yan etkiler bir iki hafta sonra zayıfladı ve şu anda neredeyse hiçbir belirti olmuyor.
I felt better already the first day. Family and friends told me they could hear that I spoke better. Then I started realizing that I had more stability when I was standing and walking. I could brush my teeth standing up without supporting myself on the sink or I could make dinner standing up without needing a chair to sit on. Then came the energy. That is the most remarkable difference. I used to feel so tired all day every day. Now I have energy! It’s like I finally figured out how to change my empty batteries. Other things that feels better; walking up and down the stairs, swimming, breathing (!) and turning around in bed.
Daha ilk günden kendimi daha iyi hissettim. Ailem ve arkadaşlar konuştuğum şeyleri daha rahat duyabildiklerini söylediler. Sonrasında ayakta dururken ve yürürken daha dengeli olduğumu fark etmeye başladım. Dişlerimi ayaktayken lavabodan destek almadan fırçalayabildim ve sandalyeye oturma ihtiyacı duymadan ayakta yemek hazırlayabildim. Sonra enerjik hissetmeye başladım. En dikkat çekici fark buydu. Her gün gün boyu yorgun hissederdim, şimdiyse enerjiğim! Sonunda boşalan pilimi nasıl değiştireceğimi anlamış gibiyim. Eskiye göre iyileşen diğer şeyler: Merdiven inip çıkabilmek, yüzebilmek, nefes alabilmek (!) ve yatakta dönebilmek.
Both my sisters are witnessing the first injection live via skype!
Kız kardeşlerim skype yoluyla ilk enjeksiyona tanık oldular!
Ok, it could all have been placebo. My mind is quite motivated for me to get better. The first few weeks I didn’t dare to talk so much to others about how I felt. Six weeks later I’m beginning to let myself believe it is more than placebo. Don’t get me wrong, I really love placebo and find it very fascinating, but we would all love it so much if there were anything out there that could put on the breaks on the monster, friedreich’s ataxia, long term.
Evet, her şey placebo etkisi olabilirdi. Beynim iyileşmek için beni motive etmiş olabilirdi. İlk birkaç hafta nasıl hissettiğim hakkında insanlarla konuşmaya cesaret edemedim. Altı hafta sonrasında bunun placebo etkisinden daha fazlası olduğuna inanmak konusunda kendime izin vermeye başlıyorum. Beni yanlış anlamayın, placebo olayını severim ve etkileyici bulurum, fakat friedreich’in ataxia’sını uzun süreli olarak yok edecek herhangi bir şeyi daha da çok severim.
Since the beginning I’ve felt gradually better. I felt a bit up and down for the first few weeks but then I’ve just felt better. So what is it by Imukin that makes me feel better? Is it the increase in frataxin protein or is it the direct effect that interferon gamma has on the neurons? Will I continue getting better, will I get back to “normal” again after a while, are there any risks I can get serious side effects later, how large dose should I take and for how long…? Is the Imukin actually fixing something or just putting on the brakes for a while? Is it all in my head?There are so many unanswered questions at the moment. No one knows, yet. Testi and his lab of researchers in Rome is doing research on this as we speak and also there is one trial coming up in the US on interferon gamma.
Başından beri gitgide daha da iyi hissettim. İlk birkaç hafta biraz iniş çıkışlar hissettim fakat sonra daha iyi hissettim. Peki Imukin’de bana daha iyi hissettiren şey nedir? Fraxatin proteini değerini artırması mı yoksa interferon gamma’nın nöronlar üzerindeki direkt etkisi mi? İyileşmeye devam mı edeceğim, yoksa bir süre sonra eski halime mi döneceğim? Sonradan ciddi yan etkileri olacak mı, ne kadar süre boyunca ve ne kadar doz almalıyım? Imkin bir şeyleri gerçekten düzeltiyor mu yoksa bir süre engelliyor mu? Her şeyi kafamda mı kuruyorum? Çok fazla cevaplanmamış soru var şu anda. Henüz kimse bilmiyor. Testi(doktor) ve Roma’daki araştırma laboratuvarı bunlar üzerine araştırma yapıyor, aynı zamanda Amerika’da interferon gamma üzerine bir deneme yapılıyor.
I’ve had one drawback so far. Last Friday I had a two hours thai massage… I thought that sounded lovely. Apparently that was too much for the system to handle. Within one hour after the massage I fell all the way back to the time before I started on Imukin. At least it felt that way; I had slurred speech like a drunk, had so much ataxia that Morten needed to support me when I walked even indoors and I felt totally out of energy. I was heartbroken. Is this how it really should be like? Was everything ruined just now? It took me three days to get better and yesterday I was all good again. What a relief!!
Şimdiye kadar tek bir sorun yaşadım. Geçen Cuma 2 saatlik thai masajı oldum. Bunun güzel olacağını düşünmüştüm. Görünen o ki sistemim için dayanabileceğinden fazlaydı bu. Masajdan sonraki bir saat içinde Imukin’i başlamadan önceki zamanlarıma döndüm. En azından öyle gibi hissettim, sarhoş gibi geveleyerek konuşmaya başladım, o kadar çok ataxia’m oldu ki Morten içeride yürürken bile bana destek olmak zorunda kaldı, ve tamamen enerjisiz hissettim. Hayal kırıklığına uğramıştım. Gerçekten böyle mi olmalıydı? Her şey mahvolmuş muydu? Daha iyi hissetmem için 3 gün geçmesi gerekti ve dün tamamen iyileştim. Çok rahatladım!
Feeling better raises so many new thoughts in my head. You know, I’ve realized by now that I wont get better, but only worse. The Gunnhild that I had a year ago is gone and will never come back. Then I start getting better and I get a taste of hope and dreams again. Amazing and so incredibly scary at the same time! Interferon gamma as a treatment for FA can be many years ahead of us still. The research is following a strict protocol to get the medication approved for the treatment of FA patients. When (if) that day comes in Norway it means we will not have to pay for it ourselves. By now I pay for everything myself.
Daha iyi hissetmek kafamda bir sürü düşünce oluşturdu. Biliyor musunuz, şimdi anlıyorum ki daha iyi olamazdım ( Umarım doğru çevirmişimdir burayı 😀 ), bir sene önceki Gunnhild (Gunnhild, yazarın ismi.) gitti ve geri gelmeyecek. Ve daha iyi olmaya, umut ve hayaller taşımaya başladım. Harika ve aynı zamanda da çok korkutucu! Interferon gamma, FA tedavisinde hala başlangıç aşamasında. Araştırmalar, FA hastalarının tedavisinde onay almak için sıkı bir protokol içerisinde ilerliyor. O gün geldiğinde (gelebilirse) Norveç’te kendimiz ödeme yapmak zorunda kalmayacağız. Şimdilik her şeyi kendim ödüyorum.
The nurse is ready, the sisters are ready and I am ready…let’s go!
Hemşire hazır, kız kardeşler hazır ve ben hazırım… Gidelim!
In December will have another FARS scale done by my neurologists and also a new blood sample to measure frataxin. This is so exciting! I guess it dosn’t matter so much to the doctors I say that I feel better. They like much more to use objective measurements. Fingers crossed everybody! If they can’t measure any changes by then and if the research done in Italy and USA doesn’t lead anywhere I still have learned a lot from this experience.
Aralık’ta nöroloğum tarafından tekrar FARS ölçümüm yapılacak ve fraxatin ölçümü için tekrar kan örneğim alınacak. Bu çok heyecan verici! Sanırım daha iyi hissettiğimi söylemem doktorlar için pek bir şey ifade etmiyor. Objektif ölçümler kullanmayı daha çok seviyorlar. Şans dileyin! Eğer ölçümlerde bir değişiklik görmezlerse, İtalya’daki araştırma biterse ve Amerika bu işi devam ettirmezse, yine de deneyimlerimden çok fazla şey öğrenmiş olacağım.
Meanwhile waiting for the cure to come there should be put some effort in finding some treatment that aims to increase the energy levels in FA patients. Everything gets easier to handle with some energy. Maybe it could be EPO, steroids, Imukin…. Just find us something! (Certain sports communities knows all about this I guess…)
Bu arada FA hastalarındaki enerji düzeyini artıracak bir tedavi bulunmalı (burayı tam çeviremedim:D) Enerjimiz olsaydı her şey kolaylaşırdı. EPO, steroidler, Imukin falan olabilir… Bir şey bulun işte! (Bazı spor toplulukları bu konuda bilgilidirsanırım)
There are so many things to discuss about this subject. I have many thoughts and maybe others have questions? Have others tried interferon gamma and can share your own experiences with me? This blog post is already getting very long so let’s end this one here.
Bu konuda tartışılacak çok şey var. Düşündüğüm çok fazla şey var, ve belki diğerlerinin de soruları vardır. Interferon gamma’yı deneyen başkaları varsa deneyimlerini benle paylaşabilir mi? Bu blog yazısı çok uzadı, en iyisi burada bitireyim.
Finally, I just have to say how much I admire and love all of those who raise money and awareness for FA out there and all the incredible researchers who are using their brilliant minds and knowledge to find a treatment for FA. Without having met you, still you are some of the most important people in my life!! Thank you!
Son olarak, FA konusundaki bilinci artıranlara, para toplayanlara, harika zekalarını ve bilgilerini FA tedavisi bulmak için kullanan olağanüstü araştırmacılara ne kadar hayran olduğumu söylemek istiyorum. Sizle tanışmasam da hayatımdaki en önemli insanlardansınız! Teşekkürler!
Son olarak, FA konusundaki bilinci artıranlara, para toplayanlara, harika zekalarını ve bilgilerini FA tedavisi bulmak için kullanan olağanüstü araştırmacılara ne kadar hayran olduğumu söylemek istiyorum. Sizle tanışmasam da hayatımdaki en önemli insanlardansınız! Teşekkürler!
That is great! Thank you!
🙂
G
Hi
In your blog, I read about Mark Allen on EPO getting good results and is happy. I want to know more as to what exactly was he taking and How long,what dosage.
Can you get in touch with him or give me his contact details.
Hope the best for you and all FAers
Bye
Hi Risipal 🙂 Sorry about my late reply! I have been on holiday and there has not been much internet time. I have sent Mark an email and I gave him your address. Hope you get in touch with him.
G
So nice of you Gunnhild
Mark has also emailed me
Thanks
.
Hi Gunnhild,
Thanks for sharing your story…How are you finding the Inferron Gammon now” Has your frataxin levels changed?
Thanks, Margi
Hi Margi 🙂 I still feel really good. No changes in side effects and I’m still on the 200 microgram dose. Energy is great. The frataxin levels are not yet analyzed unfortunately.
🙂
G
Hola, buenas noches desde España, soy el padre de un niño que tiene una EGC(Enfermedad granulomatosa cronica). Esta enfermedad afecta al sistema inmunitario, y el lleva tratandose con inmukin 5 años, tal y como se indica aqui tres veces por semana, la verdad que su cambio fue brutal, y los efectos secundarios casi inadvertibles, solo algun dolor de cabeza a las pocas horas del pinchazo y muy de vez en cuando.
No se la utilización o efectividad que tendrá en esta enfermedad, pero ojala se parezca a la que tubo en la de mi hijo, que de estar cada dos semanas ingresados en el hospital hace 5 años que no tenemos un ingreso (toquemos madera) y suerte.
Translation by google
The parent of a child with a CGD (chronic granulomatous disease) Hello, good evening from Spain, I am. This disease affects the immune system, and the case leads to inmukin five years, as shown here three times a week, the truth that your change was brutal, and almost unnoticeable side effects, some headache only a few hours prick and very occasionally.
No use or effectiveness in this disease have, but hopefully it looks like the tube in my son, to be admitted every two weeks in the hospital 5 years ago we have no income (touch wood) and luck .
Thank you for sharing your experience! Glad to hear that Imukin worked so well for your child. We really hope it will work on FA too. It sure feels like it. 🙂
G
Hi im frome kosova i read for you and imukin testing can you tell me its anything ok for FA because i have and i want to try that tell me
>?
Hi there 🙂 I am not sure I understand what you are asking, but if you want to know all that I know you should read my blog posts about Imukin. It is all written there.
🙂
G
Can you write me your email to ask you what i need to now
fafysio@extremeliving.no
very interesting thanks for the information.and i want to say that your very cute
bye bye
Thank you Gino! 🙂 🙂
Hola soy de Chile de la ciudad de Osorno y tengo un hijo de 3 meses con diagnostico de la enfermedad granulomatosa cronica y le pido que me oriente para conseguir el medicamento inmukin y el valor de este.
Se le agradece toda la ayuda que me pueda brindar le pido encarecidamente que me envie la respuesta lo antes posible
Hi Carmen. There is IFG also in south America. I know a patient in Argentina is using it. It costs less there than in Europe/ USA. You should ask your doctor for interferon gamma, Imukin or Actimmune. It could be a different name in your country. Hope you can find this medicin in Chile. Otherwise maybe you should try to get it from Argentina?
Good luck!
G
Hello Gynhild how are how is goin the therapy. I want to ask something abput imukin because i have only scolioses syrgery and after that my walking is slurred and i dont have balance and coordination every part of me is ok Can the Imukin improvement and regular Wàlking because i walk whith help can regular something i want to now frome you after the start to take Imukin you can walking good or after take your walk is good and you can walk lonely you can stay lonely ?
Date: Thu, 11 Sep 2014 08:27:26 +0000 To: endi_boy4@live.com
Hi Endrit. There is a girl here in Norway who had the scoliosis surgery in December and then started on Imukin in January/ February. You have seen her on my blog earlier. They feel like Imukin has given her extra power to get back in shape after the surgery. Potentially I think Imukin will help you too. I can not know for sure, but all i know of so far has benefits from this treatment.
G
hi gunnnhild both of my son have FA you really give me hope .
continu the good work. and please let me no your test result.
sorry for all the mistake when i whrite. because iam frenché
but that not important.we got the same gold.
A CURE FOR THAT TERREBLE DESEASE.
thanks for everyting.
Randy.
[…] can read my very first post about Imukin here and my latest update at my two year anniversary […]
First I would like to thank gunnnhild for managing the blog and sharing her experiences about imukin and FA, this blog has been a lifeline for me for the past few weeks.
My son who is 12 has been recently diagnosed with FA, below is is short journey.
The Diagnosis:
His symptoms started to show at age 6 , we thought he as clumsy, when he started having problems with his balance we thought it was vertigo, ENT or sensory integration and followed with multiple doctors. We visited Neuro when he was 10, initially he thought it as Cerebellar Ataxia, then we thought it was SpinoCerebellar and then Mitocondria, we had to go through numerous blood tests and MRIs, finally the Genetic test confirmed it was FA. We were devastated, the way the doctor told us that FA was debilitating , life shortening and there is nothing you can do about it.
The Research:
I Immediately started doing research and that lead me to this site, FARA , Dr David Lynch who treats FA patients at CHOP, and Roberto Testi who invented the medicine. I am thankful to all of them for research and contribution. We heard that there were clinical trials underway for Actiimmune, I called up all the hospitals but unfortunately there was a big wait list, as many as 50 people waiting before us to get into the trials. I know the it will take 3 to 4 years to complete the trials and get the drug to the market.
There is a lot of hope and there is a lot of research in the pipeline and one day there will be cure for this disease.
http://www.fara.org.au/promising-treatment/
The Imukin:
After reading the blog we thought we would also try Imukin, the doctors in US are unaware of this medication, they are often times very over loaded with work and do not want to take chances experimenting with the drug, even if they can give you a prescription, it is a big battle with the insurance company as the durg is a not approved for treatment yet by FDA. Imukin is not available in USA, it is marketed as Actimmue and costs $3000 per vile of .5 ml i.e 100 MCG. The medicine comes as .2 mg per ml, each vile has .5ml to it will come to 100 MCG per bottle or vile. Imukin costs about $120 USD in Europe per bottle or vile of .5 ml of 100 MCG dose. As per the blog Europe is the only place where some doctors are treating FA patients with Imukin and it appears to be working for many. Imukin is also available as interferon Gamma 1b in South America, specially in Colombia, Panama and Argentina. The cost in most countries is about the same as in Europe or even a bit expensive. I spent many day on the phone calling pharmacies around the world. I kept emailing and calling doctors in south america if anyone can help us or prescribe the medication. I also Emailed doctors in Europe if they would like to treat our son, I do not mind traveling or finding a job in Europe for few years.
I think imukin can stop the progression give much needed time until new research arrives.
At this point I am looking for a good doctor in Europe who is willing to write a script and treat our son, any help is appreciated.
There is a lot of collaboration and education, but I think we can do more to help each other and change our lives.
Hello i can help you to find doctor in eu for your son im from kosovo my name is endrit 24 whith FA to
Here is my email : endi_boy4@live.com
Contact me
Hello 🙂
I do not know of any doctors who prescribe Imukin for other than their own patients. You really need to check this out with your own doctor. Sorry for not being able to help on this.
G