just started Pegasus : For the last 15 years or so... - MPN Voice

MPN Voice

10,908 members15,257 posts

just started Pegasus

Stoosh profile image
4 Replies

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.

Written by
Stoosh profile image
Stoosh
To view profiles and participate in discussions please or .
Read more about...
4 Replies
Exeter21 profile image
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 profile image
Stoosh in reply toExeter21

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 profile image
Exeter21 in reply toStoosh

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 profile image
Stoosh in reply toExeter21

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. ❤️

Not what you're looking for?

You may also like...

Pegasus - how long to work

Happy Christmas to everyone in this amazing group. For those taking it, I just wondered what your...

Pegasus interferon injection

I have just done my 5th injection and it’s the preparing that causes me a problem I can snap the...
Hughley profile image

Do I start Interferon?

Hi everyone I have always been under a certain amount of pressure to start meds for ET cMPL but...
Quercus53 profile image

Increased Analegride Dose - Heart Related Side Affects

Diagnosed in April with ET-Jak2. Started on Hydroxurea that got my platelet count down but after...
Mishie14 profile image

Just Started Pegasys ( spelling error corrected)

Hi All Can some one comment and give your thought on the use of above injection for the following...
Stoosh profile image

Moderation team

Debinha profile image
DebinhaAdministrator
Mazcd profile image
MazcdPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.