Pegasys Interferon

[KeelerRo84]

I am about to start week 9 of Pegasys Interferon. The first week went as suspected with flu like symptoms, then every week after the side effects got less and less, until week 7. Week 7 had me vomiting for hours after the injection, but subsided on its own. Week 8 continued to have me nauseated but no vomiting. My biggest and worst side effect yet has not stopped since my last injection. Leg pain. The backs of my legs ache and hurt like I’ve over stretched and they are recovering. I sit in hot epsom salt baths, increased water and electrolytes respectively. Nothing really seems to take it away. I’ve messaged my doctor and awaiting a response. PLT 240 (first time since 2008 I’ve been in this range.)

[hunter5582]

Sorry to hear about the adverse effects. With your platelets that low, it sounds like you could use a reduced dose. This would reduce the adverse effects. Suggest you review your treatment goal with your MPN care team. It is worth noting that there is no defined value to keeping PLT that low. Some docs still use PLT<450 as the target. Others use PLT<600. Still others consider the delta (degree of change). Regardless, there is no reason to seek to have you PLT as low as they are now.

Wishing you all the best.

[EPguy]

If your new leg pain has not improved since the last shot I suggest you discuss this with your Dr. Your body may be sending you a message. As Hunter says, a lower dose may help. Do you have an HCT result? Best would be several test results during your time on IFN.

[Exeter21]

it must be too high dose of Peg. Speak to an MPN . There is no rush on this medication to lower platelets it took mine low & slow over 18 months. My platelets stayed between 400-500 & then stayed hovering 350-400. MPN happy with that & on a 45 monthly injection of peg. If you are nauseas you must speak up & I am sure a reduction would change your adverse reaction. Haemotology tried to put my on 90 weekly. I refused so started on 45 weekly that was still too strong & I was giddy etc. consulted MPN & immediately took me off it. Short break then 45 monthly. Perfect no reactions & platelets stable but I never expect them lower than 400 & healthy & happy on that.

MPN are the experts, Haemotology are not experienced enough on our medication options & doseage from my experience . Good Luck 🤗

[Mieshie]

when I started peginterferon, it was a low dose of 45mcg for some time as I had reacted badly to HU and anagrelide previously. Hematology prescribed over the counter Tylenol 325 for possible aches and pain and prescription prochlorperazine for nausea. I took both before first injection and felt fine. It was on days 2 and 3 after injection during half life period that I felt bad and repeated taking both drugs. Week 2 was very different and I didn’t need to take anything on day of or days following injection. I stayed on low dose for some time. Since then the dose was increased two more times to current 90 mcg. I keep Tylenol and nausea pills handy but have rarely used either. The slow and low dose approach helped me adjust to the treatment and lower impact of side effects. It took a while longer for platelets to come down but I’m in a good place now. I hope you find more than passage of time to get relief. The nausea pills I took worked fast and completely. Tylenol was only brand and dose allowed as it doesn’t interfere with the 81 aspirin I take nightly. Good luck!

[George1976]

Make sure to keep your digestive system and especially your liver healthy. Peg is hard on the liver.