MATEs FORUM

Hi,
Just wondered if anyone of you on Peg have annoying side effects?
I have developed eye disturbances once again which I haven’t had for years. I have had my eyes checked recently.
Also problems with tingling and numb toes. Have not had this symptom for years either. Have had the circulation checked in my legs and feet. No problems there.
Maybe these are just such symptoms of ET but they have only come back recently. My platelets are within normal range.
Does anyone else have these problems?

Best wishes
Katie

Hi Katie
The annoying side effects I experience are
- floaters
- dry eyes, particularly when I wake up (I routinely use eye drops)
- light sensitivity (I usually have to wear sunnies even when it is overcast)
- itchy patches on the skin and scalp
- no tingling but cold, numb fingers with the onset of cooler weather
However, I'm still glad to be on Pegasys rather than Hydrea
Best wishes
Allan

Thanks Alan. I do have those symptoms too. Dry, itchy eyes which are very light sensitive. I too, wear sunnies even on dull days.
I am just a bit concerned about the eye disturbances and the numb feet. Have mentioned this to the consultant but she did not seem to think it was of concern.
Thanks for replying and I hope you are well. Peg has certainly made a difference to my life after my life after my long lasting ulcer caused by HU.

Best wishes
Katie

Hey Katie & Allan...

Been looking into a few articles in relation to Platelets of late... & its really quite astounding just how complex the interplay is between Platelets & many other aspects of human biology & homeostasis...

In any event Katie, thought that I would just add my two cents, even though I'm not taking Peg' etc.

As you are aware Katie, I am Post ET / MF, hence, I have all of the symptoms that can generally be found or included w/ ET. Numbness of the fingers & toes has long been commonplace for me too... Eye issues as well, has also long been a part of my condition. Hence, one might speculate, that some of this might be more related to "ageing" in a general sense, while obviously in keeping w/ ET too...

Its hard to know where the line merges between those two (2) fatal conditions,"Ageing & ET" )

Best wishes Katie, & you too Allan...

Steve

Hi Katie & Steve
I developed significant floaters within 2 weeks of starting Pegasys. I was referred to an ophthalmologist who doubted Pegasys was the cause since floaters were not listed as a side effect on the drug information sheet. I doubt however that she, or any other doctor for that matter, would bother reporting my symptoms to the manufacturer or the TGA. If doctors don't report patients' symptoms then they don't get recorded as possible side effects on the drug info sheets. Anyway that's my theory