HelloI recently stopped taking Hydroxy after 2 years and changed to Pegusus Interferon and in many ways feel better. I had my first dose of 30 micrograms on the 13th of October and every 2 weeks since the. However l have appalling headache/Migraine and wonder if there are others with this side effect and how others have dealt with challenging early experience with Interferon.
Adiewon
Hi
I haven’t experienced severe headaches ,just fatigue and increased joint pain.
Are you drinking plenty before ,and after taking the interferon?
It is a small dose that you are taking.
Maybe contact your specialist if the severe headaches continue?
Take care,
Bobadog
Hi AdieI totally agree with Bobadog. Water, water and more water. Especially during the days before and after the shot.
If you I keep fully hydrated, I can expect not only headaches but dry and uncomfortable eyes, and a dry mouth. I usually use Vogel eye drops if I have let this happen.
I don't know if it helps, but I also try and remember to take high doses of vitamin C.
I hope you do well on Peg. I certainly do. Warm regards, Daisy
Totally agree - keep hydrated. When I don't drink enough water I get all sorts of symptoms, of which head aches is definitely one of them
Hi NCB l will definatley increase my water intake and thanks so much for taking time to redond. Adiewon
Definitely lots of water. I used to feel like I had a hangover the next day if I didn’t drink enough water, especially in the early days. I take my injection mid morning so that I can drink lots and lots of water that day. Works for me but not for all. Good luck and hope your symptoms go away soon
Hi with me had a few side effects early on but they have settled really well given time hardly know I have them now, good luck!
Thanks Mustang your response is so kind.Adiewon
hi Adiewon2
I’ve been taking Pegasys now for just over a year……gone so fast.
When I started I suffered from headaches too, along with flu like symptoms for a day or two after injections weekly. I took Peg prior to going to bed along with some paracetamol and after a couple of months the symptoms disappeared. I agree with others that hydration is vital. Water, water, water. I now take 67mcg fortnightly as my bloods are pretty much in normal values. I have PV and only required 2 venesections this year .
Very good luck to you on your journey.
Rosie
Hi Rosie, how much water do you drink? I try to drink 2ltrs a day, I’m starting this drug soon after many years on Hydroxy. X
I’d fill a 1.5 litre bottle at the start of the day and try to work through it .
Not always successful. I also drink 4 - 5 cups of tea so I’m thinking that adds to the fluids. Good luck with it.
Rosie
Morning Rosie measuring my water for the day, that's a top tip.Thank you have a good day.
Adiewon
hi the first does it was recommended I take paracetamol and go to bed . I’d have flu like symptoms. This lessened with each dose.
Good luck
I’ve been on Interferon since early Jan 22, started on 45mcg then 90mcg then 135mcg weekly. To date, apart from a red tummy around the injection site I’ve not experienced any side effects and definitely no headaches. I hope it stays that way. My bloods are now more or less stable, but I have had a number of venesections this year to get my HCT down to acceptable levels.
Thank you AndW65 it's blooming brillent when meds work without troublesome side effects. So pleased to hear how brillent this drug is its still early days for me so l have my fingers and toes crossed.
Adiewon
yes it’s a side effect & probably because your dose is either too high or too frequent. I started on peg with 45 injections weekly. After 2nd one blinding headaches & 3rd 4th. I never get headaches. I had a telephone conversation with Professor Harrison at Guys re my bad reactions headaches blinding. She has taken me off it for a month & my headaches stopped after 10 days. My next doses will be spaced 4 weeks apart 45 dose to see if body adjusts. I weigh only 60 kgs & reacted badly to any medication all my life.
Peg is good at platelets reduction as mine dropped from 560 to 320 in 4 injections but has to be adjusted in strength & frequency to hope to conquer migraines . Guys hospital London is excellent on information from Professor Harrison. Your Doctor can send email for information . 👍
THANK YOU SOOOOO MUCH EXETER21.So much good information and to hear that you also suffered migraine/headache in the early days of Interferon. Im seeing my consultant on Thursday for our usual 6 week meeting,a blood test and feedback as to how my platelets have responded. Myloproliferative neoplasm was diagnosed after a Thrombotic event more specifically a clot in my head. I suffered with intense head pain at the time and for 2 years into treatment Azetazolamide then Hydroxy. This is why l think intense migraine or headaches trigger fear and health anxiety in me.
Thank you your sharing has helped to calm me down and along with the responses from other MPN buddies lm feeling strong and ready for my appointment this week.
I drank loads of water & do heaps of walking . Also injected at night & took paracetamol. Nothing stopped the headaches it’s your body reacting . Hopefully different dose & bigger gap will help . We are all made different so hopefully we can get used to it slowly 👍
I was switched to Pegasys after 20 yrs of hydroxyurea for ET. Dosage now dropped to 45 every 3 wks. It has started affecting my breathing and my eyesight - difficult to focus. Small headaches, not severe. Am now on 1 litre of oxygen . I stopped taking the pegasys and after 5 weeks, my eyesight is better . Emailed my haemo but have had no response about my stopping it. Anyone else with these problems??
Very brave but with my health history to stop taking my meds without medical supervision no way. Take care we are in similar circumstances changing meds is always so difficult in my experience as lm sensitive to all medicines. Get as much support as you can don't know what l would do right now without this site.Stay strong.
Adie8
Brave or stupid? Who knows? But I am 80 yrs old and I have no intention of living to be 100, blind and in a wheelchair. I am pursuing a conversation with my hematologist because I want to know what happens if I continue to not take the Pegasys. I'm guessing he might not have that answer either.
Morning Sandymacp lots of deep issues and experiences to contemplate. I have to say EPguy and others on this site have personal history and learning that may link to some of your experiences.Good luck
Adiewon
Eyes are a possible serious side effect of IFN, esp possible damage to the retina. If you do resume the PEG you should have some visits to ophthalmologist to monitor it. I have been doing so since before starting Besremi. I had super sensitive to light when I started, so far all is ok.
A particular concern would be spots, flashes, and the like. But even a large change in focus indicates seeing the eye specialist.
Thank you. I appreciate your advice. Have now had current blood tests done so will be aggressively pursuing my hemo guy.
I experienced that early on with interferon. I now drink LOADS of water /squash & that does the trick 👍
Threelions nice, well l am drinking loads of water, it's a pain because l take wafrin and so aren't allowed ibuprofen. At the moment lm taking a combination of codine and paracetamol, thing is body is becoming resistant,3 days before lm back to see my consultant. Pain is very challenging at the moment and lm like a bear with a sore head. But talking with everyone on this forum is helping to manage my anxiety.Thank you friend
Adiewon
Hi,
Saw your comment from several months ago. Are you still on interferons? I am on Besremi and developed very strong headaches, yet my blood pressure became elevated, as well. I have always had hypertension and to combat it, I doubled my blood pressure medicine and that seemed to help. I am scheduled for a MRI just to rule out anything else. I doubt they will find anything. Interferons can raise blood pressure and cause headaches. I asked the MPN specialist to lower my dose and I am currently taking the lowest dose(50mcg) and will stay at that for awhile to see if everything subsides. Do you have hypertension? My blood numbers are trending in the right direction, so I really want to continue with the medication and hope these symptoms finally resolve.
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