Pegasys!! : Hi just a little update I have triple... - MPN Voice

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Pegasys!!

Samlowery17
Samlowery17

Hi just a little update I have triple negative ET I think no BMB not needed my professor states, am 31 and was diagnosed 3 years ago one of the young unlucky ones. I have never had any side effects from this nor would I have even realised I had it if it were not for a blood test. Anyways cut story short Oct,November last year was when I got told I needed treatment platelets 1549 and climbing hated the thought of hydro as I am only young with a family and don’t trust the long term use of it (my opinion), so I started pegasys was rough to begin with feeling ill, headaches, general aches etc. But now 7 weeks on my platelets... wait for it!!! Are 400!!! OMG I AM OVER THE MOON!!! What am trying to say is if you are young/old and get offered pegasys go for it and bare with it I wanted to give it up after 2 weeks but now I am so glad I never, I feel fantastic no tiredness I work full time as a nurse and run around after a young family. Hopefully next appt in 8 weeks I can stop taking it 🤞🏽🤞🏽

10 Replies
oldestnewest

So happy for you!

I started about 9 weeks ago. My platelets at the start were 1200 after a fortnight they dropped 729 then went down on the next blood test to 629 . I couldn't wait until the next blood test results were that they were back to 790 ...😣

I am jak2+ and I'm mpn unclassified.

Hi Sam,

Excellent result. I guess you are on low dose 45mgs per week. Don't be surprised if the count continues to fall over time. I've been taking Peg low dose since Sept 3017. Counts continued to fall and have levelled off at 160. However , sorry to say this , but you have a chronic illness which will probably mean you have to continue with Peg indefinitely. That's my understanding, , in some rare cases I have read it can regress and you can stop the meds. That may be an urban myth - unless someone out there can shed some light on this ?

Keep it up you're doing great.

Jocko

Hi, that’s absolutely fantastic. Keep the good work up xx

Happy for you. It's doubtful you will stop having to administer Pegasys however! i began it in June 2018 and within 3 weeks my platelets were in the normal range. Continued to drop but of course, Pegasys isn't selective and red and white also dropped and I was slightly anaemic. This was remedied by reducing the intervals between injections from one week to 10 days. My dose is 45mcg. My next appointment is mid February and I'm looking forward to a good report on the bloods. You are so lucky regarding side effects. I get just about every side effect of the drug and symptom of the condition but of course, my body is used to it now as is my brain! What's left of it!!!!! Stay positive and I hope you continue to enjoy life and work.

ATB. Penelope

Until we get to genetic manipulation, cytotoxic drugs would normally be for life.

Thrilled for you and will take on board what you have said. I had my anagrelide increased to two a day in addition to 17 hydroxi x 500 a week. Recently I had to drop 1 anagrelide, as I couldn’t cope with the lightheadedness to the point I would be a danger to drive. If the medics say coping with it until my body can cope then after reading your post I will.

Thank you

It’s great to read a positive post especially from someone who falls into the younger age demographic with our condition. Xxx

I miss typed stop taking it I mean reduce the frequency of injections am fully aware this is a long term condition, but I refuse to let it take over my life. From my knowledge and understanding from my professor is that all be it no serious complications ie thrombosis or bleeding I will continue to life a near to normal life span. I live everyday as I have always I go out drink have a good time, I won’t let this bring me down, I was in that dark place last November and I think the reason I felt so bad was because I was overthinking and overlooking into this disease. Thank you for the positive comments xx

I was on HydroxyUrea for about two years. Controlled the ET well enough, with occasional venisection, but I was always tired - had to quit work. Three months ago I started pegasys (and a series of B12 injections - very low level was disclosed after starting Pegasys) and after a month of aches and headaches, I began to slowly improve and now I feel significantly better. I wouldn't go back to the HydroxyUrea. Still not planning to return to work, but I would have retired in 5 to 10 years anyway. When I'm not sleeping, I mostly feel "human" again. I was reluctant to try the Pegasys because it is unsubsidized and quite expensive, but I am pleased I did.

Is it very sure that you are triple negative ET??How this confirmed?

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