Just to encourage those starting on Peg Interferon to be patient & to be your own advocate on your treatment. I started on Peg 2 years ago after asking for it due to my intolerance of HU after my ET Jak2 diagnosis following a shoulder sports injury.
I had no symptoms apart from slightly breathless if walking uphill. Usually fit & outdoor sports hobbies all my life.
Professor Harrison approved Peg & I initially stayed off anything for 3 months after HU gave me gastrointestinal problems.
My platelets were only 590 but because over 65 I was considered At Risk.
Started on 45 weekly on Peg but couldn’t tolerate the doseage. Giddy & light headed. Again taken off for a few weeks & started back on 30 so body tolerated drug.
This worked so then 45 monthly. Platelets started to reduce very slowly & fitness uphill returned.
Yesterday all my bloods are back in the normal range & platelets reading 260.
Interferon is slow but to me it’s an excellent solution to my health .
Maintenance is still 12 weeks blood checks .
Hoping this helps the ones like myself reluctant to try it. The actual side effects they write up on these drugs are frightening & reality very very rare. I have had none on this low dose & inject mornings as nighttime’s for me ruined a morning of feeling tired . Day injections have no side effects .
We are all different but wanted to share this information for new users .
Good luck & we are so lucky to have this informative website .
Julia UK 👌
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Exeter21
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Glad to hear that you are being your own best advocate and following your preferred plan of care. I would certainly agree that patience is needed when using the interferons and the focus needs to be just as much about quality of life goals as it is about the numbers on labs. While we certainly want to reduce the risk of thrombosis we also need to live high quality lives.
Thanks Hunter yes I felt that many times the Drs rush a quick result ignoring patients reactions to drugs. Hopefully this site helps and your great knowledge & information thanks. Julia’s😊
I wish to confirm the success of the interferon injections. Just over a year ago my platelets were plus 1000. I had been taking hydroxycarbamide for 2 years but didn't like the side effects plus had to take on a daily basis. So I stopped the hydroxycarbamide and after a few months my platelets were up past 1000.I started interferon over a year ago with weekly jabs of 45 and within 3 months my platelets were around 600. Now I inject 45 once a month and my platelets are 320 in the accepted range.
It's so good Just have to think about medication once a month apart from the daily asprin. For myself it has been a real plus.
I also don't have a problem with the injection. After the first few you quickly realise there is no pain. Just got to get your head around it.
Hope this helps someone out there.
And thank you to all you contributors that helped me to change to interferon injections.
Really appreciate the knowledge and wisdom of this site.
Brilliant you will be fine . May take a bit of time to get doseage to suit you but if any problems speak to an MPN as they will suggest different doses if your Dr doesn’t. All our bodies react differently & I was reduced to 30 monthly initially as it gave me headaches. On 30 the body got used to drug & headaches went then increased to 45 so don’t let them push you too fast if any side effects Irene as doseage changes will sort it . Julia 👌
great news Exeter21! Very happy to see your progress and good results on the low/slow/steady course. I am following in your footsteps at the one year mark. Thank you for sharing your journey. My confidence is up another notch.
Thank you for sharing Julia, that just the best news, and it gives us all hope.
I'm on 90 every week and I know my consultant wants to increase it again to 135. My platelets gave been yo-yoing between 720 & 860. I hoping on my next test my platelets may have dropped. If so, I'm going to follow your lead and request staying at 90. Just like Hunter has explained, low & slow gets results and helps our quality of life too. You have proven this, with your results. So happy for you.
Yes do not worry if slow to move . Mine went up some months but due to trivial reasons. One time it was mosquito bites when travelling caused it & another time a torn shoulder injury injury.
Stress can raise them . I never thought mine would move lower but body eventually reacted. My MPN did not suggest raising the doseage due to side effects so kept it low . 2 years roughly to get steady readings . Helps to get 2nd opinion on the treatment from an MPN as Haemotology wanted to up me to 90 when MPN wanted 45. MPN decision worked . .
Thank you Julia. I am very lucky as the Haematologist I'm seeing is fab. He's been consultanting with Guys in London and at a recent appointment, shared some research articles on patients going into remission. Thanks to you and others on the forum, I'm more informed and it was a very interesting appointment.
I have been on Pegasys for almost 2 years and it has been very slow. I am now injecting 45 every two weeks. My allele burden has gone from 23 to 7.7 in less than a year. My platelets are in the high 500s and continuing to go down. I am very happy with the Pegasys after suffering greatly on hydroxyurea. For the most part I have zero side effects. I am a very active person, but do find uphills difficult, which is new for me. It just feels like more effort than it should. Hopefully I am able to find a solution for this.
Yes I am like you very fit normally & until the platelets started to reduce I was breathless. The oxygen is not carried properly if too many I understood. My speaking with an MPN knowledgeable in our disease helped considerably. If you haven’t consulted an MPN do so as they are the experts & may have different suggestions. You can email them which I did if you haven’t got any nearby .
thank you so much Julia. I am looking into seeing if any experts will do online only since there are none here in Hawaii and my insurance just changed to Medicare so I will hope for the best.. wishing you all the best.
Hi Julia and thanks so much for your positive post. Such good news you are getting results and feeling you are in control of how you are getting there.
I stopped taking Hydroxy 2 years ago due to the increased effect of side effects and decided to be put on a ‘watch and wait’. I started Peg 5 weeks ago (45 weekly) and feel so lucky I haven’t suffered many side effects. My platelets were at 1345 when I started and the blood test 4 weeks later had them at 650!
I look forward to the time when I only need a ‘top up’ once a month (fingers crossed!) when, hopefully any lingering minor side effects (nausea, fatigue, aches) are just a bad memory!
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