I’m on Hu but thinking of switching to Pegasus what’s everyone’s in take on Pegasus I read stomache pain nausea and muscoskelatal pain I get all thisevery day with fibromyalgia im worried it wil make it worse what’s every ones thought on it the Hu is just to many side effects for me been on 5 months now
Hu or Pegasus : I’m on Hu but thinking of... - MPN Voice
Hu or Pegasus
Personally I have been very happy with Pegasys. I think the secret is to start off with a small dose and augment it gradually. I started off with 90mcg once every two weeks and worked up to 135 mcg every week. The only side effect I ever experienced was feeling pretty knocked out the day after the injection and having to lie down for a nap in the middle of the day. But your body does get used to it; I hardly notice any difference now. It is a slow-acting drug and it took almost a year for my blood counts to normalise. I also had to have venesections during that time. Now i just inject once every 3 weeks and feel absolutely fine. I still have to be careful not to get overtired and very ocasionally have days where I just feel exhausted, but I honestly don't think it's related to the Pegasys, more to the disease itself.
Neither venesections nor aspirin nor hydroxyurea nor Pegasys are free from side effects. And, of course, a clot could be catastrophic. You could try a low dose of Pegasys with venesections as necessary until the slow acting Pegasys takes hold. In my case Pegasys is working well and I am taking a very high dose as a alternative to venesection.
While I have yet to have experience with Pegasys, I had to d/c hydroxyurea as I had toxic effects even at lower doses. The MPN Specialist I consulted took me off it saying that in my case, the risks outweighed the benefits. For now, I am on a phlebotomy-only regimen. If I need to revisit cytoreduction, then it will be either Peg-interferon or Jakafi this time. The thing I have learned is that we are all different in how we respond to these meds and one size does not fit all. I am hoping that we will reach a point where genetic testing for MPNs will be able to predict optimal response to medications. All the best.
Hi,
I’m on Pegasus, and it has suited me quite well. I don’t get many side effects, other than I think my hair has become thinner. In the beginning I felt like I had a cold for a day or two after the injection, now I get tired a few hours after, so I take it before going to bed. I’m on a low dose, as my liver values go up if the dose is higher. I have had some venesection whilst on the medication, but not as many as before. I haven’t been on other medication, as this was the first choice and seems to suit me reasonably well.