I was diagnosed with ET at the age of 37.Until now I have been taking 75 mg of aspirin and been having regular check ups.Yesterday had appointment and now my platelets are 1500-my haematologist want me to go back in 2 weeks time for more tests and depends on the results I will need to choose a treatment.Reading about all available options I am very worried of the side effects.For 8 years I have not had any symptoms related with the ET and the thought of taking medication that will make me tired and generally not feeling well scares me a lot..is there any body who is taking interferon?(I am thinking to try this first as is non toxic option)
This is my first post ever -I don’t like talking about my condition but now I feel I have to start looking for some support ..will appreciate any information
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Welbi
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Hello there, I have ET and was diagnosed aged 37, I am now 56 and over the years have tried various treatments. I tried interferon, I worked the injections around my working life, it made me feel achy but by far the worst side effect for me was severe anxiety and depression. Even after coming off the drug and having a drugs rest for a few months the depression persisted and was treated with antidepressants. I too do not like to disclose or talk about the disease. I have been taking Hydroxycarbamide for a long time and that too has side effects, but on a positive note I was diagnosed in the year 2000, I get a huge amount of support from this site. Good luck to you and your decision on medication, we are all different and Meds effect us differently.
Thank you very much for replying to me Bobthecob..it will be a difficult decision ..I am sorry you hade depression when taking interferon ..I already suffer with anxiety so may be will not be the best choice for me ..
Hi. I chose Interferon as it seems better for someone my age (43 at diagnosis last year). HU (so Haem and literature says) through longer term use potentially brings increased chance of developing Leukaemia. No such evidence with Interferon. Flu symptoms went away quickly, and my platelets are down in normal range in just a few months (900+ to 300), all good. I take the interferon 3 times a week and take on an evening. No other side effects for me. Best wishes Cath.
Thank you very much Cath for replying to me ..so glad to hear you are ok taking it ..this is my first choice and I will give it a go and see how will feel...so pleased I asked the question
Hi Welbi, I'm 37 (but have PV) and take Pegasys. Currently on 135msg/2wk as platelets have reduced. I've been really lucky and had very few side effects - I am a worrier so I thought anxiety may get worse but it hasn't. All in all, I'm really pleased but I know not everyone is as lucky on this medication x
I am 56 and been on 45mgs Peg Interferon for 21 months. It's been OK , if I get any side effects it is occasional tiredness. I cycle to work and apart from having to inject weekly I forget I am on it. My counts are down from 1250 to a steady 160. So all is good.
I am 63 but was diagnosed 19 years ago. I have been on various medication Hydroxycarbamide, Anagrelide and now Interferon. I personally have found Interferon to suit me best. Yes I am tired but is it the disease itself the medication or age nobody knows. I have had no anxiety or depression with Interferon. But we are all different to how our body reacts to a drug. I hope you find one that is good for you.
Not sure you will be offered interferon. I went on hydroxi . You might find that once you start treatment and your platelets go down you will feel a lot better.
I started 5 weeks ago for pv. My platelets have gone down from 996 to 545 only in 4 weeks. I had only used 3 injections to achieve this results. My Hematologist was impressed with the results wants me to come back in 4 weeks to check my improvement.
Hi Welbi, there comes a time when we all have to start. If you have any autoimmune problem, such as a food intolerance or allergy in any way, eczema or psoriasis, etc., it’s better to avoid interferon, since it works through the immune system. I have a thyroid problem, therefore IF is out of the question. Make sure you check these things out before starting. All the best to you.
Hi there, I stated Pegasys about a year ago after having really bad palpitations on Anagrelide, started on 180 mg, now on 90, counts around 300. Get achy bones muscles and the dreaded fatigue but side affects more tolerable than Anagrelide, inject once weekly. Now 63, was diagnosed in 2006 ET CALR positive. Well worth a try at your age. Good luck whatever you decide. X
I started Pegasys in December 2016. To have it available through the NHS it seems to depend which trust you are under. I had no problem with funding but I did have to have another specialist back my research. My blood levels have been stable for more than a year. I’ve only require 1 venesection while on Pegasys. I’m not symptom free but I do feel better on Pegasys.
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