Peginterferon side effects!

[Fairbank]

Hi all,

I have ET Jak2+ since 2021 and have been injecting 45mg Peginterferon weekly for 6 months and doing relatively ok until just recently. I now am experiencing severe aching arms and legs radiating down from my neck to my knees. It is so bad that I have to take pain killers daily. My blood pressure has also risen and my blood test showed that my d-dimers are very high. Can anyone here throw any light to what’s going on? Thank you for viewing my page.

[hunter5582]

This is really a question that needs to go to your MPN care team promptly. Arthralgia and myalgia are know adverse effects associated with Pegasys. That could be what you are describing, or it could be something else. Hypertension can also be an adverse effect associated with various medications or combination of medications. The increase in d-dimers (a protein fragment that your body makes when a blood clot dissolves in your body) also needs prompt review by your MPN care team.

Please do follow up promptly with a MPN Specialist. This may be a minor bump in the road, but it is better to be safe than sorry in this situation.

[Fairbank in reply to hunter5582]

Thank you Hunter for your sound advice, always welcome.

[Wyebird]

oh dear it sounds painful. I do think you should contact your specialist nurse.

Hope it’s resolved soon.

I too am on Peg.

[Fairbank in reply to Wyebird]

Thanks. I emailed my specialist nurse and have just had word to say stop taking the Peg for now. May be able to see the consultant next week she says.

[Wyebird in reply to Fairbank]

so glad you’ve had a fast response x

[PupsBestFriends]

I have no experience with Peginterferon, but have been on Besremi, another interferon, for 6 months.

At around 4 months I started having increased arthritic pain, mostly in my lower back. I have had two previous lumbar surgeries, so it always has been a balancing act to manage lumbar pain. The pain has increased slightly in the past couple of months, and is at it's worst at night.

I have also recently experienced arthritic pain in my neck, hips, knees, and shoulders. These arthritic episodes seem to come and go from each affected area. For example, my neck and shoulders have been completely pain free this week, but my back and left knee have been very painful the last few days. A couple weeks ago it was my neck and shoulders. At it's worst, this pain has also radiated into my arms and up my spine.

I began taking a supplement from Naturewise with 2250mg turmeric with 500mg of curcuminoids, 105mg of ginger, and 15mg BioPerine. Within 3 days I noticed a major reduction of pain. I have taken acetaminophen a couple of times to help me sleep when the pain has been terrible, but am not keen on taking painkillers regularly.

I see that you've already consulted your specialist nurse and stopped Peg for now. I hope you find a solution to continue ET treatment, while providing relief for your symptoms. Best wishes.

[Fairbank]

Thank you for the information about the supplement you take for your pain. I will look into that. Sounds like you’ve been through the mill quite a lot so wishing you well for a pain free future. Take care.