Can anyone given me any advice re; Interferon

[Marie95]

I am due to start interferon meds very soon due to unstable counts on hydrea, the Hem has warned me I am in for a period of ajustment which maybe very difficult in parts due to side effects - I would be very grateful if anyone can share their experiences on this med, I guess I need to know how bad it can get, and did anything change for you over time, was it best taking before bed, or did that keep you awake - my minds doing overtime as these are always difficult choices we have to make, but you all seem such helpful friendly group, I just had to ask. Many Thanks.

[Dingwall1979]

Hi marie95 - I changed from hydroxicarbimide to interferon a couple of years ago - I did get the flu type symptoms to start with so I took my jab on a night having some paracetamol half an hour before. I ended up on a very high dose so I had some other side effects which included hair thinning and lost about half a stone as didn't have a big appetite however once I went to a low and stable dose of 3mg 5 times a week I didn't really have any side effects apart from a bit of brain fog - I managed to have only a small time off work during the 14 months of changing doses and my platelets went belw 400 which was never achieved with hydroxicarbimide (never got below 600) interferon worked a lot better for me as had alt of side effects with hydroxicarbimide and just could not tolerate it. I am now on Pegasys the longer lasting interferon and platelets have again gone to below 400 after only 8 weeks of treatment and again apart from brain fog feeling great! How do you feel about injecting yourself? It's always hard when you change meds and your going to have lot of emotions and uncertainty when you start and while your body adjusts but from my experience well worth it and wish I had changed meds a lot sooner - am here to chat anytime if you would like. Take care Becky

[StreetPastor in reply to Dingwall1979]

Hi Marie95 & Becky,

I am interested in why you have gone from Hydroxicarbimide to Interferon, missing out Anagrelide?

My hem has me on Anagrelide & keeps trying to talk me out of interferon. I know we are in big trouble in Wales re overspend in NHS & interferon is expensive.............

[tombs]

I have always been on Interferon, since PMF diagnosis in early 2009. I was very lucky indeed to suffer the side effects only after the first injection. I know that many others cannot tolerate continuous side effects and have had to change treatment. I think it depends on your body's ability to adapt and I do hope you are OK with it.

[Elvis-Fan]

Hi there

I was on interferon whilst pregnant, I was quite poorly on the first night, sweating, shivering and vomiting quite regularly resulting a horrible headache and fatigue the next day. After the first night the side effects werent as bad.I took it 3 times a week on a night and each day I had a bad headache but the fact I was pregnant meant I couldn't take lots of painkillers to ease it. I then increased my dose to every other night as opposed to having the weekend off (used to take mon, weds & fri) and this seemed to keep it in my system longer so the headaches eased, I just felt a bit groggy.

All the best.

[Jennie_Barnes]

Hi

I've been on interferon for 3 years now, and I have had the least side effects. When i was on hydroxeuria (4years) i felt sick all the time and had the same effects with anegralide (3years) but with interferon I take it before bed and have a slight headache the morning after but this usually goes after taking paracetomol.

[Beartime]

Hi marie95, I have been on interferon for about 18 months now - following initial diagnosis. I moved on to Pegasys 6 months ago. Treatment with the interferon was three times a week. I always took it 5 hours before going to bed & tried to be asleep before the flu symptoms started. Sometimes I took paracetamol before going to bed. For me, this worked well, so that I could sleep through the worst. It took me about 6 months to fully settle on it. I got chest & joint pain mainly during the day & some fatigue. I moved on to Pegasys so that I had more of a life & not having to plan my week around treatments. I have found little if no side effects with this treatment. I was getting to the stage with the interferon that I was going to stop treatment, however at the 6 month stage it was as if someone had flicked a switch I started to feel human again. This treatment is managing my levels really well to the point that I only inject next once a fortnight now. I wish you all best with the treatment. I would say stick with it & give it good try!!!

[Marie95]

Thanks so much for all your informative detailed replies - although you can have family, friends around you, you can feel alone at times like these, well not anymore, I now feel I can make a more informed choice ,I hope I can offer some useful advice when a question comes around I have some knowledge, or experience of. Becky - I am the person who looks away when having an injection, but that's about to change isn't it, would love to chat when I get started next month, Hi Streetpastor, The question of Anagrelide didn't come up, apart from Hem telling me Hu & Interferon are first line med's, and the other second line if 2 above don't work/agree with you. As far as i am aware Interferon remains much cheaper than pegasys which I was refused by the PCT, If you feel it might be right for you after your research, discuss again with your Hem, you have every right to be included in all your healthcare choices, good luck

[Aquaphobe]

Just found your question and concur with those who have already answered. Diagnosed in 2009 i went straight onto Interferon Alpha and the first few doses were hard . BE prepared for the first one to hit you like a train but don;t be put off, it does get better. I persevered and within a few weeks the side effects were much less severe. I am now on Pegasys and have been so for about eighteen months and like the others have found this much better with less side effects. I am a chartered accountant and have had little time off in the last three and a half years despite the consultant telling me that professionals in a stressful job find it hard to deal with the effects of interferon. I have had to shorten my hair length as my hair became strawlike and found this hard but have found a length which suits me and the effects of the interferon.

I started with a count of 1150 on diagnosis and my count is now at 225 with the Pegasys. I would not want to have to change.

[Marie95 in reply to Aquaphobe]

HI, Great to get your reply as keeping ahold of my job was one of my concerns as I work Nights/days, and so far, managed with little time off, Its so empowering to hear stories like yours, and responding so well to treatment, I already have the 'straw hair' with HU, but thanks for the warning of reaction to interferon, I know many others have also mentioned this, just hope I am one of those who can manage ok on it. Take care

[Malaika]

Hi. I have been on Interferon now for a few months. The initial dose was a bit of a roller coaster ride but that was the only one. The other side effects have nearly all gone I had to cut my hair short which I didn't like but I now have such good blood counts that it has all been more than worth it. I still take 2 Paracetamol before bed on injection nights and it is enough to help me sleep. Hu had stopped controlling my counts so we had to try this and I am very grateful although I am still on some Hu hope to titrate it down eventually. Good luck I am sure you will be fine.