just started Pegasus

[Stoosh]

For the last 15 years or so my platelet counts was over 450. But never been over about 540. I am now 71 years old. Recently specialist advised to go on medication. All these years I was not on any medication for blood . The specialist about a year back told me to go on it as red cells count and platelet count compete each other.Also I was advised that I have Jak2 mutation .I was reluctant to go on medication. I had venesection few times and subsequent blood tests were done too. About a month back specialist recommended me to take Pegasus 45 microgram/.5 mL each for two weeks and change to 90 microgram/.5mL for every two weeks. I have now taken the first 90microgram dosage for the first time.

The blood test performed a week prior to taking Pegasus showed 543 Platelets counts.

I am travelling overseas in a weeks time.

I have appointment with specialist in about two months time.

When I read some of your experiences and comments about how Pegasus is improving platelets counts gives me good confidence and courage in taking the above injection.

I will keep you all informed how I am progressing with it. Bye Now.

[Exeter21]

yes excellent medication. I have been using it for 2 years for ET Jak2. Platelets were 590 then & 260 now. Other bloods in range. I have 45 monthly & travel with it regularly & no problems . Blood tests around 8 to 10 weeks . 👌 Hope it helps but it is a slow drug but worth it .

Julia .UK.

[Stoosh in reply to Exeter21]

Thanks Exter21. Good to know that you are v happy with it.

Just a query regarding travel . If you go overseas how do you take it. It is supposed to be 2-8 degree C cooled. Which type of cooler do you take in with and take it. I noticed some one commented about Disoncare . Is Disoncare Odssey suitable for it to take to last about 24 hours ? I looked at their webpage but it is not v clear whether suitable for that temp range. It is ok for diabetic insulin but is it also suitable for Pegasus? I am planning to order tomorrow if suitable.

Your thought on it Pl

[Exeter21 in reply to Stoosh]

With regard to coolers I discussed it with my MPN as do long haul. I was told the drug is ok out of fridge for up to 24 hrs. So I always put mine in their boxes as they are packed for travel. Put them into a small cool bag similar to kids school lunch ones with a gel cooler from freezer I put in. It stays cool enough for my medication & if worried I just place ice cubes in polythene bag in it periodically . I often sail & we don’t have reliable fridges onboard but my drug has worked fine for past 2 years travel. You can buy these expensive ones online but the cheaper ones are just as efficient . I do carry a letter showing I am prescribed the syringes & ask it not to be put through scan machine at airport. Always been ok even in remote airport s around globe 👌

Julia

[Stoosh in reply to Exeter21]

That is excellent advice. Thank you very much Exeter21 for it. Only reason why this came up is my Pharmacist specifically told me that it is v important to keep under that temp condition otherwise it will be off. Unlike insulin injections they told me it is v essential to keep in that condition.

Since your MPN advisors told that I am now very confident that I can use it.

It is very helpful

I have learnt a lot in this forum. Infact this is the first forum I joined few days back. I can see how much it is useful and how each person in the group helping each other. Wonderful forum. Definitely it will be helpful to many others too.

Best wishes. ❤️