Eight months ago I started taking Ruxolitinib. Prior to that I was taking HU which made me quite ill. However Ruxolitinib is not working and rather than my platelets lowering they have gone up, were 600 now 987 and sometimes higher, also I have developed a serious skin cancer on my neck and leg. I have had the tumour on my neck removed and will have the two on my leg removed in a few weeks time. These tumours are I understand as I result of taking Ruxolitinib. However today a Haematologist at my local hospital phoned me stating that I have an appointment with him next Tuesday to start Interferon. He did mention this medication a few days ago as an alternative telling me the side effects, flu like etc etc symptoms. I am really concerned about these symptoms as the op on my leg is in a few weeks and if I have a fever with raised temperature I'm sure they won't operate.
Does everyone have these symptomst, how bad are they and how did you manage them?. I have just come out of Hospital after 10 days due to a serious infection from the op on my neck so the thought of starring a new medication rather worries me.
Comments on side effects etc of Interferon would be greatly appreciated.
Many thanks.
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Heather270240
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Hi Heather 270240I have ET was diagnosed when I was 18 I am now 47. Initially I was prescribed Hydroxyuria but this did not go so well so was put on Interferon straight away. The first few times I had this medication initially it made me feel like I had the chills but no temp this subsided after about the 3rd dose. My experience of interferon is a good one. I was advised to take the injection out of the fridge to cook a bit so say for 5-10 mins take a paracetamol before injection. On a very rare occasion it can give me the chills feeling. It this is very rare and usually alleviated with a paracetamol. I was advised to take at bedtime so if you did get any symptoms you can usually sleep through them mostly. I know everyone is different and will experience things differently but my person experience of Interferon and Pagasys is a positive one. I hope this helps.😁
Hi Mandy-moo74. Thank you for your comments. You have put my mind at rest abouty taking it now and the side effects you mention I can probably tolerate.
You were very young when diagnosed. It must have been a dreadful ordeal. I do hope you’ve managed to enjoy life. Lol your experience of Peg is identical to mine. I read your post after submitting mine .
Hi WyebirdYes I was very young and initially it was a very big shock and did consume my life a bit initially but I have learned to live with it, I enjoy travelling, got a career, had my son so yes am making the best of everything, 😁
I have been on peg for about 9 months and have had hardly any side effects whatsoever. I don’t even take paracetamol. I actually take mine in the day as it was morning when nurse showed me how to do my first one and I find I have time to drink loads of water that way which is a must. Started on a 45mcg dose and went up to 65mcg. It can be a slow acting drug for some to control blood counts so you need to be patient. Drink loads of water. Injection is easy once you get used to it. It doesn’t suit everyone but there are plenty here who are peg fans. Well worth a try anyway. Hope it goes well for you and any questions we are here to help
It has kept my platelets steady, not rising. Hoping blood test next week will show a reduction. Have put weight on but not to do with peg. Just me being a piggy. Started to cut down and am losing weight slowly now so peg shouldn’t be a problem in that way. Let us know how you get on
Hi Heather 270240 I have ET jak2+ I've been on Pegasys for about 9 months now, (previously on HU for 9 months but it really didn't suit me - I felt awful most of the time). I started on 45 mcg peg and felt ok but was encouraged to increase the dose first to 60mcg then up to 90mcg I then began to feel miserable like I had a cold all the time, so after only a couple of 90 doses (platelets were coming down quickly), with agreement with consultant I went back down to 45 and I feel fine. I inject on Thursday evenings, no problems, I have noticed that Sunday afternoons (always seems to be Sunday not sure why time delay) I get a bit of a headache and sniffs like I'm getting a cold, a couple of paracetamol and I've forgotten it. Platelets had been 800 but now down to 270. A couple of things I have noticed - everyone is different and it's been trial and error to figure out how to stop my fatigue - I used to eat a lot of chocolate and drink gallons of coffee both of which I can't seem to do now. I drink lots of water (at least 2 L), herbal tea and small meals, no processed foods and I have no fatigue (if I eat an average size meal,10 mins later I have to sleep!). For me peg low dose works (so far). Hope everything goes well.
The only side effect I have had is being constantly tired. Obviously everyone is different. My levels came down within weeks. I get more trouble from the aspirin. Good luck with it. I haven’t put any weight on, I’ve lost 12lbs on the short time I’ve been on it, about 9 months.
Hi Heather270240, I’m 7 weeks in with 45mcg peg per week. When I was prescribed first dose I also had anti sickness meds prescribed as well, just in case. I decided not to use the anti sickness as I didn’t want to take it if I didn’t have to. Fortunately it worked out, but I had to increase my water intake from 6 to 7 pints of water on the injection day otherwise I wake with a headache. I take peg just before bed along with paracetamol.
Hi, Heather. I’m very interested in this topic as well. I am post Et Mf And currently only taking hydroxyurea and baby aspirin. However, my platelets stubbornly hover between the 700’s to 800’s. My doctor mentioned switching to peg interferon to bring down my platelets. But I’m very hesitant regarding the side effects since I’m feeling pretty good right now.I wish you all the best in your decision. Sounds like a very stressful time for you with everything going on with your other health issues. Hope everything gets resolved soon.
Many thanks everyone for your encouraging responses. Everyone is different but I think I should be prepared for flu type symptoms so I'll stock up on paracetamol.
Peg interferon is my life saver. I love it. The first dose and it warns you, stay in bed and take some painkillers- you get mild flu like symptoms. The second likewise but a lot lot less. 3rd dose I could go out but wouldn’t drive. Symptoms go less with each dose. I used to give my self a chill day but I think most of the time it was apprehension.
Now after 6months I think nothing of it. A bad day whilst on Peg equals a good day when I was on hydroxi and anagrelide. Mind you I was taking quite a few of them.
Hi Heather, I’ve been on 45mcg of Peg since mid-October. I was all prepared for side effects but have had none so very pleased Platelets went up initially probably due to an accident I had that caused internal bleeding, but they are coming back down again now. It can be very slow acting though and I’m not in any rush, I’d rather stay on a low dose. Hope it works out for you!
I’m two weeks in to Pegasys and feel fine. I did have an upset stomach 24 hours after the first injection, but then I realised it was probably the Katsu curry from the night before. The injection is painless and, psychologically, I feel better when I administer it than when I swallow an HU pill.
Strange you feel psychologically better taking Peg instead of tablets. I too feel exactly the same way. I’m absolutely dreading being told I have to go back to tablets
Interesting, isn’t it? It’s early days, of course, and it’s possible I might develop bad adverse effects, in which case I’d have to go back on HU, but from what I’ve read, the younger you are the better, so I feel I have nothing to lose by trying. My thinking all along has been, if both PEG and HU are just as effective AND there’s a good possibility of a molecular response with the former without some of the risks of the latter, then why not try it? Also, since some of the adverse effects seem to emerge after 9 months or so, I feel I’d just have to hold out for a little while - if they’re only mild - and hope that Besremi is available next year!
Oh dear here I am 7 months since starting Peg laying in bed light headed!!! I do hope it’s unrelated. I’ve just had my bloods done and all are fine. I’ve a telephone consultation on Wednesday.
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