ET CALR mutation mail 53y.o.

[Gesha]

Been diagnosed 2005 with ET CALR MUTATION. Today 53 y.o. 1250 platelet count. No meds! Thinking trying pegasys. Heard that it is the best old stuff for.... Any thoughts?

Thanks

[Jocko]

Hi Graham,

I am 54 and have ET with Cake+. I was diagnosed May 3017 and started peg interferon I'm Sept 2017. The consultant suggested peg however after reading about the alternatives I had already come to that conclusion if it was possible. Counts have dropped from 1250 to 192 and it has been quite easy to deal with. I do get muscle aches , tiredness and the odd headache. But this is easily dealt with by popping a couple of paracetamol. If you get the option give it a try. If it doesn't work out you can switch to something else. Good luck and let me know if you have any other questions.

Jocko

[conno61 in reply to Jocko]

Its a postcode lottery in the uk as to whether you can get it.

[Jocko in reply to conno61]

Yes I think it's pretty expensive. If you are keen on trying it then I would suggest it if they don't. I hope what ever happens it works out.

Jocko

[Gesha in reply to Jocko]

Thanks for information. In us insurance company usually not paying for pegasys. Only if you failed all other treatments. Which is crazy. I'm going to buy it myself. One more question, What dosage you do?

Thanks

[Jocko]

I'm on 45mg which is half a syringe. It's a bit stupid because I have to squirt half of it out before I inject. I'm not sure if you can get a small dose syringe which would be cheaper. Can you buy this medication over the counter in the US ? How will you monitor if this is working ?

[Gesha]

I'm going to buy it in Ukraine. It's about $120.00 there! And 180 mgr. It's good for 4 time's. And it's the same brend ROSHE. And you can use it twice, just get more

[Gesha]

Needles from diabetic syringes. They are the same and you can get them at any pharmacy.. in the US 1 syringe over $1000.00 it's crazy.

. thanks for your response 👍

[Gesha]

I don't know how to monitor, i gess maybe once a month cbc blood test. How you been doing and how fast count went down?

Thanks