Just me again… Ranting about Imukin as usual 😛
So a pandemic just happened and making research on FA move even slower than before. Our patience have been tested in many ways this year, but if you have FA you are in hurry for real. No lockdown, one meter rule, face mask or antibac can keep us safe from the progressive force of FA.
I’m lucky to have Imukin while all this is going on, and while we wait for future treatments and a cure. To me taking Imukin means that some symptoms are gone while other symptoms slowed down or even stopped progressing. (Here you can see what others say about Imukin and effect on FA)
It is unfair that this treatment is not available for everyone.
Earlier this year the newest Italian study on interferon gamma (Imukin) was published.
12 young people with FA was tested using Imukin.
- During the 6 months period the progression stopped. For some of the individuals there were also a slight improvement.
- Heart wall thickness reduced!
- After the study was over progression continued and the heart walls started to grow thicker.
Doctors often refuse to prescribe Imukin because they are scared of the safety of the drug in FA patients. Well, both this study from Italy as I mentioned above AND the American study from 2018 says safety is good.
The American study: “Overall IFN‐γ 1b demonstrated a reasonable safety profile.”
The Italian study: “The treatment was safe, with only 2 serious adverse effects, both spontaneously resolved”
(You can find the Italian study here: Vavla_et_al-2020-Movement_Disorders)
I’ve heard that about 30 % do not have any effect of Imukin (I’m not sure about this number). So that’s boring, of course, but it also means that 70 % can have an effect. Worth trying?
Unfortunately for Imukin, it seems like there is little interest in funding further studies. It makes no sense to me that the current drug owner in Europe, Clinigen, don’t have the interest in funding more studies on Imukin and FA. Is this for real, Clinigen? Are we too few patients to make it financially attractive for them to bother? Does anyone have an idea on how to start these wheels spinning again?
I would like to hear your opinions. Maybe you can write your comments below?
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