I am 34 with ET. I started Pegasys at 45mcg per week about 2 months ago and for the most part I haven’t noticed obvious side effects. However in the last few weeks I’ve noticed pain in my hips, I think it’s muscular rather than in the actual joint. It tends to hurt sharply upon certain movements but it doesn’t ache. Most recently I’ve developed a really bad spasm in my lower back and my eyelid is twitching.
I know interferon can cause muscle pain but I imagined something more like the type of aching you get with a flu. Has anyone experienced issues like the ones I describe above? I’m just not sure whether it’s a side effect of the meds or just independent issues. My mood has also been deteriorating but it’s so hard to tell if that is a side effect or just something I would have experienced anyway!
I will speak to my haematologist about it but was just curious if anyone else had experienced similar things. Thanks all
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AlexWheek
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Oh Alex, I wish I could tell you. So many really general possible side effects, both physical and mental. If you wouldn't normally take much notice of the odd twinge, or mood change, you might be more aware now you have started Peg, because you are expecting something. But if it's worrying you, get it checked out. After nearly 4 months on Peg I think I am probably a bit slower, tireder and more wobbly, but in my case I could equally put it down to old age or my arthritis getting worse.
Sounds like you already know that Pegasys can have adverse effects of arthralgia and myalgia. Likewise with changes in mood. I have not heard of it causing spasms or twitching. It may be that there is more than one thing going on. I would suggest that you follow through on talking to your hematologist ASAP. Your care team needs to be aware of these potential adverse effects.
Yes , I have been experiencing pain in my hips and sometimes it runs down into my legs especially during the night. I also had crippling itching after showers and weather changes. I have been on peg for a year , it definitely does not agree with me even though it has leveled my platelets, I have ET also . As of yesterday after a call to my specialist I am not going to continue with pegs and hopefully find another drug that will suit me better . Good luck
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