pegasys and migraines

[Smithjoa]

I see from a recent post response that there are others on Pegasys who have suffered from migraines. I have been on 45 mcg weekly for a few months and have just had an excruciatingly painful migraine. I have had a few less painful ones. I’m hoping some patients will share their experience on this subject, particularly on dosage and any other advice. I never had migraines prior to taking Pegasys. I will speak to the hematologist, but I need some thoughts before I do that. Thanks for any input.

[Mishie14]

I have experienced no migraines. I have been on peginterferon since March 1. Started with 45 mcg injection 1 per 2 weeks then in mid May switched to 45 mcg injection 1 per week and so it goes now. Injections are usually 2:30 PM on Wednesdays so have time to adjust with expected reactions coming during the night--which never happened. It's been slow and easy for me as I reacted badly to Hydroxy and anagrelide. From the beginning my prep has been to take a 384 TylenoI 2 hours before injection as precaution along with at least 3 pints of water morning of injection and repeat after injection. Lots of water every day is very important. Result has been consistent: slow reduction in platelets; no migraines; no impact on liver, kidney, etc.; day of injection no issues; day 2 periodically wake up with bone and joint pain lower back and left leg that is alleviated with 384 Tylenol; and late AM can get an upset stomach that lasts about an hour, started taking a prescription anti-nausea that stopped it quickly. I suspected having empty stomach may be a trigger for the nausea so have been taking a mid-AM snack that helps prevent nausea altogether.

Now that I have been taking it for several months, I have noticed short periods of sadness or irritation can appear out of nowhere. They seem to occur during the first 3 days when peginterferon is at its highest strength. My go to is the 384 Tylenol that can help but does not stop it. I try to exercise, get out a mystery novel, go outside for a walk, etc. to distract my mind.

Should also note that at the very beginning back in March a hard red spot about the size of penny appeared on my shin. It was painless. Thanks to this forum I was pointed towards inflammation reaction as the cause. Consult with dermatologist and biopsy confirmed it is an inflammation under the skin that is specific to interferon use. Got a prescription cream to apply and the spot disappeared after a few weeks, no new spots either.

Peginterferon has been a life saver for me. I hope you have good luck with it and find relief soon. Stay safe!

PS--I take the 384 Tylenol because that is the only pain reliever approved by my hematology and cardiology as I take low dose aspirin every night.

[Jelbea in reply to Mishie14]

Hi Mishie - Can I ask you if you did experience migraines in the past before you took peginterferon and if so were they the type with aura? Thank you

[Ovidess]

Smithjoa, I had aura migraines for many decades, and they seemed to begin after I discovered that I had high platelets in the early 90s. The platelets were checked every year and many doctors assumed they were congenital. The migraines, even to this day, are never reliably blamed on my platelets. When I started to feel weak last summer, and my blood work revealed that the HCT levels were also climbing, I began traveling toward the ET, then PV diagnosis. I had 6 doses of Besremi interferon earlier this year. That brought the HCT to normal and helped lower platelets, but it also elevated liver enzymes. I had headaches, etc with interferons, but not migraines. Even now, off treatment for almost 3 months, I don't seem to get full fledged migraines anymore. I sometimes get a little shimmering, but nothing worse. Odd since my platelets rose after getting off Besremi. So the platelets/drugs/migraine association is uncertain.

My liver enzymes, by the way, with a little herbal help, plus qigong, returned to normal. However I recently had an unexpected and unexplained bruising on my calf and intense rib pain that sent me to urgent care. My acupuncturist and the urgent care doc said the rib pain might well be due to an inflamed or troubled liver despite the good enzyme levels, but my oncologist (a new one) says he thinks not; he will, however, refer me to an ultrasound to check it out.

Hope your migraines vamoose!

[Smithjoa in reply to Ovidess]

Thanks Mishie and Ovidess for your kind and thorough responses. I have had the aura headaches and they seem to be related to platelets but never a full fledged migraine until I was on Pegasys. I have PV.

[Smithjoa in reply to Smithjoa]

Ovidess - one more thought about the liver. PV can cause pulmonary hypertension which can affect the heart and then cause liver congestion. Good to keep an eye on it. Best of luck.

[russkatt]

I started PEG 7 weeks ago at 45mcgs and I have not experienced any migraines. Sometimes I have to wonder if the side effects are from the drug or just the disease?

[Exeter21]

Yes I suffered badly when on weekly 45 but contacted MPN & was changed to 45 monthly . Headaches stopped & all good again . Interferon working . I inject mine mornings as that way I drink lots of fluids & get excercise When taken night time I got migraines . It’s all on the doseage . Has to be done slowly for body to get used to it .

I also had horrendous ocular migraines prior to ET diagnosis . Had eye tests for them but no one EVER suggested bloods tested . Took years until it diagnosed ET . Julia . 👍

[Smithjoa in reply to Exeter21]

Thanks, Julia. Morning injections are a great idea that I hadn’t thought of. I will also increase time between shots. I had the ocular migraines too. Jo-Anne

[Exeter21 in reply to Smithjoa]

Jo-anne . It really works well morning injection . When I told Haemotology how I solved my migraines they went ‘That’s a great idea no one ever suggested that 🙈!!

I honestly work out my own injections & timing now . It’s trial & error. If I am going away during injection I do it just before I go. I used to take it away on ice but now on monthly injections I can juggle it. Headache’s & eyesight problems all gone. However ensure loads of water & daily walk as if I don’t I find every bone aches . You can conquer this 👍Julia