I was diagnosed with Polycythaemia 6 years ago and have been taking Hydroxycarbamide for most of that time. My blood levels are stable but I’ve had two squamous cell carcinomas removed recently and the Hospital is now muting the idea of changing to the above by injection.
Reading the possible side effects fills me with fear.
Is anyone else using Peginterferon?
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Hi Lucydoo.
Firstly welcome to the forum and thank you for posting.
Any change in medication and reading a new set of possible side effects is naturally and normally going to cause anxiousness and worry.
I too have Polycythaemia vera (PV) but I actually started on interferon. To be totally honest with you and along with many others I’ve interacted with have endured little to no side effects to the interferon injections.
I had a few issues which I don’t believe nor were ever proved to be related to my Polycythaemia vera (PV) but the specialists got spooked and wanted to switch me up to going on hydroxycarbamide. I too was extremely fearful and reluctant to go on it but it was the reassurance of others that made me give it a go.
The important thing is to know though we may have the same condition how we react maybe different. They always start you on a low dose to monitor if you encounter any side effects that may hinder your quality of life and any experienced will not be long lasting.
If it’s the thought of injecting yourself… I’d certainly say it’s not at all bad and after a few gos you’ll master it and feel hardly anything.
All my levels were well maintained and bar mild flu symptoms after the first injection was absolutely fine there onwards. Happy to answer any questions you may have.
Thanks again for posting and look forward to hearing more from you 
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Hello there @Lucydoo, just wanted to second @Rammie18 in welcoming you to the forum, from one Polycythaemia vera (PV) survivor to another. Glad you found us here!
Really sorry to read of your diagnosis with Polycythaemia vera (PV) and those skin cancers, how are you getting on with it all? Any words of wisdom you’d like to share from your place of living with Polycythaemia vera (PV) for so many years?
I’m still taking daily hydroxyurea so I’ll look forward to pearls of wisdom from others taking peginterferon for Myeloproliferative neoplasms (MPN).
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Hello Duncan,
I don’t know if I have pearls of wisdom but I can say that I have been able to live my life as I’ve wanted, with a sense of humour and positivity to the fore! Don’t think about what you can’t do, but focus on what you can.
I continue to play (gentle) tennis at 80 and allow myself a nap when Infeel the need!
Keeping my skin out of the sun has become vital since the squamous cell carcinomas have appeared.
Great to have found the forum to chat with others who understand.
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Hi Rammie,
This is so helpful information, thank you.
I’m not afraid to self inject - it was the list of side effects which really spooked me, particularly hair loss, as this would not be able to recover as I would have to remain on Interferon for the rest of my life,
So hearing you’ve had no side effects is really helpful. Thank you.
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Hi @Lucydoo a great big welcome to our forum.
I cannot better the replies you have had from @Rammie18 and @Duncan.
I really find reading side effects scary, it is the unknown for me.
Please do keep posting as I look forward to hearing more about you and how you are getting on.
Look after yourself and be very kind to yourself
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I use to take Interferon Alpha and had to self inject it twice a week.If I remember correctly it comes in two dosages ,a red box and a yellow box but I can’t remember which was the stronger one.I don’t know about other blood cancers but it didn’t work against T Cell Lymphoma .There’s an Interferon Gamma too which they use in a similar way.The third type Interferon Beta is used for stuff like Motor Neuron ,Multiple Sclerosis and doesn’t seem to be used for cancers .
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I didn’t get any hair loss on interferon but my hair did thin when on hydroxy…
This is the advantage of being on a low dose to see if you have any side effects. It’s pretty common that side effects either fade after time or any side effects that occur return to normal when you stop the medication
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Oh I love this @Lucydoo, the idea of living our lives as we would like is my goal with all this. I’ve been very fortunate to have a relatively easy time of it with minimal side effects from the hydroxyurea and try to just get on with it… with catnaps aplenty! My fatigue is far less severe now that I’ve learnt how to take breaks better.
If I can reach 80 and be as active as you I’ll be a happy chap. Very impressed that you’ve kept that going. I’m a keen hiker and after some adaptations I can still get out into the hills. Been out twice this week already and feeling rather chuffed with my body.
Know what you mean about keeping ourselves out of the sun, it’s been quite a mission for me since diagnosis. I’ve ended up changing my hiking clothes to ones with high UPF sun protection which seem to help on top of high SPF sun lotions. No sunburn as yet, thank goodness 
Long may we remain active and protected from the sun @Lucydoo!
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Lucydoo I was recently changed from Hydrea to Ruxolitintib. My doctor was also considering changing me to Inteferon. I live in Ireland so not sure if this is relevant but as there is a shortage of Inteferon the decision was made to start me on Ruxolitinib. I wish you well with what ever medication you are put on. They all come with a list of potential nasty side effects. It’s good to hear that you still get to do things you enjoy like playing tennis. Best wishes. Liz 59
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Thank you for your message Liz. I have heard that there is difficulty in sourcing Interferon. I have decided to continue with Hydroxycarbamide as it is keeping me stable, but being very vigilant around sun exposure and damage, However as I look out of the window this morning there is no problem with that!!
Best wishes to you, it’s good to be in contact with other people who really understand.
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Hi Duncan,
Well done with the hiking! Enjoy every moment - awake or napping!
Every day is a blessing.
I’m off to help with a group of young adults with learning difficulties - we have live music which they love - and so do I - but I’ll limit the dancing today I think!
Keep smiling!
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Lucydoo I hope you enjoyed the music and there’s nothing wrong with dancing in your chair. The cold weather is making itself known. I was advised to wear factor 50 even on a dull day after I had acitinic keratosis which are not serious. Maybe check with your doctor if you should be too. Best wishes Liz59
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Thanks Liz. I shall be using a higher factor sunscreen from now on.
Best wishes.
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Thank you Liz, I hope you are doing well on Ruxolitintib. Do you mind me asking why your consultant felt you should switch from Hydroxycarbamide and if you have experienced any side effects on the new drug? I know everyone is different but it helps to know about particular cases.
Many thanks.
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Lucydoo I was switched from Hydroxycarbamide due to side effects. Several mouth ulcers including one on my tongue which caused it to swell which made it difficult to eat and drink, severe fatigue I went from walking long distances to needing a nap after going to the corner shop and brain fog,confusion. I am on Ruxolitinib about 6/7 weeks only. Positives so far increased energy, brain much clearer, memory better and can enjoy hot showers again. Couldn’t have hot showers before due to itching after. Side effects are weight gain and cold hands and feet. Having bloods again next week so should know more then. Hope that helps. Best wishes. Liz59
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Thanks for sharing that, really helpful. I have no side effects from Hydroxycarbamide and it’s keeping me stable which is why I don’t want to change.
Your side effects sound horrible. Hope you continue to do well on the new medication.
Keep smiling!
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The Sun is so low now as it’s less than 2 months to the Winter Solstice now which falls at 09:19 UTC on the 21st of December that sun burn isn’t too much of a worry at my high latitude in northern England! Although I caught it today in my telescope with appropriate solar filter and there were about 8 sunspots on it.
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Glad sunburn isn’t a worry for you @Kevan7, and yet there’s still a glimpse of sunlight where you are—I love that you’ve been having a careful look at its sunspots 
I still look forward to the winter solstice. It usually meant my SAD would decrease afterwards with daylight increasing following the shortest day, thank goodness! Maybe I should have been looking towards the sun like you to cheer me up?!
Lucky now to live somewhere bright all year round, albeit often foggy, so no more SAD for me, just a touch of June Gloom!
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Never suffered from SAD and as I like my stargazing I quite like the darker evenings although it’s all part of a natural cycle so best not to get too attached to one part of it.
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