ET/JAK2+.
I started Pegasys 45mcg 14wks ago and my platelet count was stabilised at 10wks (age 66yrs). I was given the option of Hydroxy or Pegasys, for me Pegasys was the right decision. The only change I could report yesterday at my FU was increased muscle pain. My Dr agreed that Pegasys can cause muscle pain, so now I will inject fortnightly instead of weekly. I’m slightly neutropenic so hopefully this will improve both issues by ⬇️ frequency.
Glad to hear its working for you!!For me peg irritates my spinal nerve damage after injecting.I'm now moved to every 3 weeks.
Hope the 3wkly injecting is reducing your pain. My muscle pain is back of both legs only and has increased over the past 5wks. Of course my sacral nerve pain may be a contributing factor too. I’m usually well controlled on Nortriptyline. Wishing you better days.
or you could try 22.5 weekly, some docs prefer that
it’s early days I’m still tweaking my Peg I started on 90 units weekly I’m now trialing on 90 every 5 weeks.
Amazing progress
Yes 2yrs after starting it. So Sorry to read the injection aggravates your nerve damage. I think you can inject into the leg. Maybe that would help. I do hope so.
I always injection the leg(alternating) it's just means a bit more codeine.A couple of days after the injection it seems to.settle with just the pregablin.Luckily for me no pins and needles or numbness so it's not getting any worse.Hoping with the next appointment to move to monthly if everything is the same.
Good luck! I’ve been on Pegasys for a few years now and it works well for me.
That’s brilliant . I am also on same with ET Jak 2 I find the injection brilliant. I started on weekly 45 now on monthly & all blood readings in range. Glad I pushed for it when it was not offered to me . Julia UK. 👌
congratulations! Very happy for your progress. Hoping the timing change brings more comfort. Stay safe!
Hi, it is sometimes hard to differentiate between normal aches and pains with ageing or something drug related. I have been transitioning very gradually for hydroxy to pegasys over the last six months (low dose peg 45mcg every two weeks) and after about one month on peg noticed my regular aches and pains had ramped up to another level. I have always been very active and I am now finding it hard to maintain this due to the discomfort. Currently debating what to do, the pegasys is bringing my platelet numbers down and the reason I wanted to come off hydroxy was because my platelet levels were increasing so had to keep increasing hydroxy dose. I thought by now I would be getting used to the dose and the discomfort would return to the normal level but as yet that has not happened. Whilst I can become accustomed to the new pain levels my concern is what damage is this drug causing to my muscle and joints, a question for my next hospital visit. Good luck on your journey.
Hi, I wonder if you did monthly injections for a while to see if anything changes. Did you have bad side effects with Hydroxy? Will be interesting to see what your Dr says at next appointment. Good luck for you too.
Hi, thanks for your response. I have been on hydroxy four years and my dosage was gradually creeping up due to elevating platelet levels. I developed gastritis, dry skin etc, which was thought to be due to the hydroxy and I was really anxious about my hair thinning so I asked about Pegasys. Plan agreed but know one thought to tell me that pegasys also causes hair thinning and also the consultant also knew about my long term muscle soreness and joint pains and never mentioned that peg can cause these symptoms also. I still take one hydroxy daily along with the peg so I think it would be fair to give peg a run until at least I am completely off the hydroxy which will involve a lot of tweaking of dosage I expect. I am very slightly built (6st 12Ib) so they are being careful with my peg dosage perhaps looking at 45mcg weekly once off the hydroxy but that will depend on my platelet reaction. I forget about this most of the time and then occasionally I have a melt down, I fret that my life just becomes about 'this'. Watch this space!
Glad it is working well for you. Peg has brought my platelets into the normal range, RBC is too high and WBC is a bit low, so Hematocrit has been consistently above acceptable. Regular phlebotomies every 5 to 10 weeks depending on reading. Increased dosage to 135 recently in hopes to slow the RBC production with PV. Dry throat/thirst seems normal.
On the very positive news. My provider has had two patients with JAK2 Mutation test negative for the JAK2 Mutation after 5 years of Pegasys!
Keep up the fight!
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