Interferon and Hydroxea

[Charlieapple2018]

I visited an ET specialist who has recommended I keep waiting for Interferon to kick in ( I’ve been injecting for six months with limited results) and add in Hydroxea to bring my platelets down quickly due to symptoms. What are your experiences of taking both at the same time? I’d be grateful to hear your experiences.

[JojoWonder]

Hi Charlie, I’m ET CalR, I started on Interferon (90) weekly earlier this year and aspirin every other day, like yourself my platelets stayed stubbornly at the same rate which for me was in the 1100’s. 2 Hydroxy tablets daily were added in to my programme and my platelets dropped to the 600’s. I didn’t feel any different within myself which was great. I was then reduced to one hydroxy around 4 months ago and my platelets again have remained in the 600’s.

A couple of months ago a Haematologist recommended that I up my interferon to try to reduce my platelets further originally to 120, then at my last visit to 135 weekly because of my stubborn counts. I have found my mood over the last few weeks declining until this week after my injection it has been pretty awful. I’ve never really experienced depression before but after injecting on Sunday night I have felt very low with some aggression until mid Thursday when my mood returned to normal, which is generally pretty upbeat. I’ve called my Haematology dept and left a message but I’m still awaiting a response. I’ll call today again as I’m reluctant to take more interferon for fear of this becoming a trend. I know it is side effect of treatment.

I have come to realise that meds are a fine balancing act and each of us will react differently.

I’m so conflicted about meds anyway as in all areas I’m considered low risk, although my principal Haematologist considers me a moderate risk because I’m 43, if I was under 40 in his opinion I would be low risk 🤷🏻‍♀️, and my platelets have never been recorded as more than nearly 1200 but I’m on a full on programme of meds even though it’s usually watch and wait unless your platelets are 1500. His reasoning is that because my platelets have risen since they’ve been recorded over the last couple of years they are likely to hit 1500.

All this can really mess with your head - even without chemical intervention.

I think it’s a matter of constantly tweaking until you get the most satisfactory balance for you.

I really hope hydroxy helps you. For me the only real notable side effects have been changes to my nails, more ridged toe nails, and skin, more freckles and slight dark patches even though I wear a factor 40 daily. Less vain people may not even notice!

Good luck and let us know how you get on.

Best wishes, Joanne

[Charlieapple2018 in reply to JojoWonder]

Thank you, that reassuring. I am ET Calr+ too and my platelets are hovering between 1300-1800. I’m considered high risk because I have nerve pain in my hands, aura head aches and bleeding.

[Charlieapple2018 in reply to Charlieapple2018]

There’s limited choice at our age, I’m 42 as the other two drugs have risk of leukaemia with prolonged use.