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Update on my eye issues and side effects with Veenat

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Hi all

As I have been posting about my eye issues, i thought I'd give an update.

It started with a soft pop and a lot of floaters in the 3rd week of dec. A week of travel and hiking later, the vision in my left eye was very bad, floaters, dark haze and fuzziness (like greasy glasses). I went to an opthamologist in Sri Lanka, where i was on hols. He said I had a retinal bleed which was due to my condition, I think he may have sealed it with a laser (I'm not sure) and in any case said it was no longer bleeding but I should have bed rest to help the blood in the eye reabsorb. I did this, and it was almost back to full sight, then I danced a little  (30 mins) and the vision was worse than ever.

I returned from holiday mid Jan and went directly to the eye hospital in Swtizerland, where I am treated for CML. The vision got better and worse in the time between and it didnt seem to have any corrleation to my activites. It was pretty bad by the time I got back. They found I had a hole in my left retina which was bleeding repeatedly (and causing the vision loss) , the hole had been caused by new blood vessels that the retina tried to grow when my blood count was very high (mine reached 335,00 wbc before I was treated) and there "anarchic" blood vessels were also in the right eye (but had yet to casue vision loss)

I am now undergoing treatment with lasers every week to seal off/discourage the growth of these vessels and hopefully it will be a permanent solution. Though its not sure at the moment and I might need surgery. Meanwhile I am feeling very angry at the doc who let me walk out of his office in March 2015 with a white blood count of 50,000 (I was dianosed in July) ....all this could have been avoided...

 

On another note, I was switched from Tasigna back to Imatanib while on hols in Sri Lanka as we suspected the eye bleeds were to do with taking Tasigna at that point. I took Veenat which is the indian made Imatanib (200$ for a month supply!!) and found that I had problems with nausea than I did with Imatanib from other companies. I tried one or two doses of veenat when back in Europe as an experiment and found nausea too. 

Eva