Pegasys Interferon and Hashimoto's disease

[Dusty777]

Has anyone, with Hashimoto's, had any adverse side effects while using Pegasys? Ever since I was switched from Hydroxyurea to Pegasys, my body has had an explosion of pain, ranging from headaches to GERD to sinus issues and beyond. Trying to figure out if it's the combination of the thyroid disorder and the interferon, or I'm just getting older and falling apart. Appreciate any input - thanks

[hunter5582]

Pegasys can have adverse effects that include arthralgia, myalgia, and thyroid issues. Pegasys has a caution for pre-existing thyroid disease. If these symptoms are new, starting after initiating treatment with Pegasys, then it is quite reasonable to think that you are having a reaction to Pegasys. This is an issue that you need to discuss with your MPN care team.

Hope you find resolution soon. All the best.

[Mishie14]

I don't have Hashimoto but do have hypothyroid for which I have taken levothyroxine 75 MCG Tabs 5 days per week for some time before and since ET diagnosed in 2022. Checked with endocrine doctor before starting peginterferon. He wanted immediate thyroid blood tests before first injection for baseline and I now get thyroid blood tests and exam every 6 months as a precaution. Peginterferon dose started at 45 weekly and slowly up to 90 now still weekly with good results. The levothyroxine dose has not changed and I don't have any worsened thyroid issues. So far so good. Please check with your care team for help understanding what is causing your side effects. Hoping your discomfort gets solved soon. Stay safe.

[Pachena]

I have Hashimotos and have had a few side effects like yours tho I find them less intrusive than when I took Hydrea.

The positive is the longer I am on Pegasys, the less I am bothered by them.

I began on a 45mcg does of Pegasys in June and went from weekly to 10 days to now fortnightly.

The longer I am on it, the better I feel 👏🏻

Best wishes 🌸

[jodary in reply to Pachena]

Hi, I am also hypothyroid and am on hydroxy , did you notice any changes in your blood tests or symptoms of hypothyroidism while you were taking hydroxy ?

[Dusty777 in reply to jodary]

Not at all. I was diagnosed with hypothyroidism two years prior to the ET diagnosis. When I was put on hydroxy, my blood tests did not change. A year later I was told I had Hashimoto's disease. I was on hydroxy (while still taking levothyroxine) for four years without any side effects (other than the occasional mouth sore). My life/health took a dive when I was switched to Pegasus and I am certain it has to do with chronic inflammation. Pegasus can create inflammation and Hashimoto's is an inflammatory disease - so combined, my body did not take it well. Some people don't have this reaction - unfortunately I have. But in a nutshell, no side effects with hyroxy and no changes to my thyroid blood tests. Hope that helps.

[Pachena in reply to jodary]

No, Jodary, I did ask them to check and I was assured my thyroid was fine. Before I started on Pegasys, I asked for my thyroid to be checked as well as my eyes.

So I had a base to check back upon.

They did blood tests plus an ultrasound on my nodules. All was fine. Also the optometrist kept a record.

So far all appears well.

I did get some tightness in my chest into my throat and have had that throughly checked with a cardiologist but all is fine and that too is fading.

All in all I feel better side effects wise on Pegasys then Hydrea 😊

[jodary]

Thank you, just wondered as Ihave been hypothyroid for 40 years and on hydroxy for 5. I just seem to be struggling with hypo symptoms since increasing hydroxy and not sure if it’s effects of hydroxy or some interaction with medication . Haematologist says no but must be something. Am having a private blood test as am fed up with them saying it’s fine and not comparing to previous tests to see if anything has changed

[Dusty777 in reply to jodary]

Doctors will tell you everything is fine while you feel like heck. I too have been paying out of pocket to see an integrative doctor to manage my Hashimoto's. My hematologist sees no connection between Pegasus and autoimmune disease (states right on the pamphlet that comes with meds). The whole thing is frustrating and you need to advocate for you own health (even if it means going around the system to find answers). It's not beyond reason that the increase in hydroxy may be affecting other conditions - too bad doctors don't want to dig into possible culprits when the patient says "I don't feel well". Jodary, hope your blood test reveals something with an easy solution or tweaking of meds. My best to you. Let us know what you find.

[jodary in reply to Dusty777]

Thank you I will

[EPguy]

You should rule out other additional autoimmune conditions beyond thyroid. As you've noted IFN has a black box warning for this and you could be at elevated risk. Your comment "My life/health took a dive when I was switched to Pegasus and I am certain it has to do with chronic inflammation" is an good indication you want to rule these out.

You can see my post here for a decent list of tests I got.

healthunlocked.com/mpnvoice...

and my post "Last Dose" for a worst case outcome.

[Anag]

it’s basically the immune system that is affected. I was on Besremi and had the highest dosage 200mcg of thyroxine daily. I switched to the Autoimmune paleo diet, and did everything possible to eat only organic, no chemical in my home on by body or clothes, or in the air switched to bioidentical thyroid hormone. All my Auto imm problems left me, brain fog, migraines, colds, bronchitis, etc gone! After 4 years I only need 40% of original thyroid med. then came Besremi. It worked well but after 9 months the pain started. Everywhere where I had had accidents. Hands, r. Shoulder, feet, r. Knee,fingers, neck, lower back.

The pain became so excruciating over time. Stopped several times. Restarted on min dosage. Same pain. So stopped completely. Am on Anagrelide. Thrombose keep climbing Anagrelide cause heart problem. HU, nervous system really bad. My symptom were mai ly when I slipped off the diet s bit inflammation just caused my body to scream

I’d like to try Pegasus 9 month after stopping. My mpn spec said some better with Besremi, some with Pegasus. 🙂

[Dusty777 in reply to Anag]

Oh my, so it's not all in my head (or old age). My pains started 2-3 weeks after starting Pegasus. 4 years on Hydroxyurea, no problems. Have had headaches for 8 months now. I'm going to ask to be put back on Hyroxy for a few months to see if my body's fire dies down. Pains keep me up at night and there's only so much OTC pain killers you can take without additional side effects. Thanks for sharing - best of luck.