My Dr and I planned to start last Friday but due to logistics with my insurance we are starting Jan 10th. I'm currently taking 1500mg of Hydrea and my Hematologist wants me to keep taking it while starting a Pegasys dose of 180mcg. I told him I thought that was too high and prefer to start with 45mcg and work my way up if need be. So I will continue the 3 pills of Hydrea with 45mcg of Pegasys. If my numbers are looking good we will start to take off one pill at a time to taper me off. The other option is for me to start 90mcg. The syringe comes in 180mcg and I can't use it twice so I will be burning a lot, however I'm reluctant to start with 90mcg because the other side effects and I don't want to give my liver too much to handle.
Question for anyone taking Pegasys, what dose did you take when you first started?
Side note: Make sure to always be your own advocate. My Hematologist is wonderful, however he is very tough and aggressive with his treatment, and because of the information I have discovered, I ultimately choose what is best for me when it came to my medication and dosage.
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Zeppelin11
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Hi Zeppelin11, I started with 45mcg every 7 days. I stayed on this for about 3 months. The dose was then increased to 90mcg every 7 days for about 6 months. I am currently on 90mcg every 10 days to reduce the dose (mine are supplied in 90mcg).
Hi, I am transitioning from HU to Pegasys and started on 45mcg every two weeks. First dose was in September, I have dropped two doses of HU per week (now on 5 HU per week). Had some side effects with flu like symptoms the first two Peg doses. Now those are not happening any more but I am getting some occasional muscle pain. Blood values are fine. Good luck with the new therapy,.
Most of us start pegasys at 45mcg then titrate up as needed. For those transitioning from HU to PEG, there is usually a period of overlap titrating the HU down while titrating the PEG up.
There is some parallel data for people with PV switching from HU to Besremi. The norm is to start at a half-dose of Besremi (50mcg) then titrate up gradually while titrating the HU down, It may be worth reviewing this with your MPN care team.
I would agree that starting at the max dose of PEG while also taking a high dose of HU may be a bit of a challenge for your liver and other organs. Many of us achieve control of the thrombocytosis at 45mcg or 90mcg. Given that you are on a higher dose of HU, you may also need a higher dose of PEG. Your thought that it would be best to work up gradually does make sense.
Here is one of the protocols for the use of Pegasys.
Really? My Dr said once I use it I have to throw it away. The pharmacy mails me my prescription so I'm not able to seen anyone in person. Would love more information.
In the US you're unlikely to get cooperation from the pharmacy. $ and liability are the usual issues. In Euro and likely other places there is more flexibility in this area as we see with the dual use Bes syringe there.
Your best bet is to discuss with Dr, maybe ask why not.
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