UPDATE!
Week 13 of Pegasys and bloods today showing a definite downward trend in my platelets 🥳 Currently at 480 which is almost within normal range.
Hi gang, hope you’re all well!
I’ve had my 3rd dose of 90mg Pegasys (ET JAK2+) and curious to know how long it took others in the same boat to see results?
Sarah 💚
Hi Sarah, so glad to hear that Pegulated Interferon is starting to work for you! Great news. Are you still getting many side effects? Hope all else is well with you? Brona 
Thanks B! Side effects are still a bit of a mystery to me. It’s like a weekly pick and mix between muscle & bone ache, flu type feeling and nausea but nothing that’s unmanageable. They’re definitely less intense than they were at the start, also much easier to tolerate now that I’ve seen positive results ☺️
Glad to hear that that the side effects u are experiencing are manageable as it means u can continue to take peg. That's good news you platelets are going in the right direction. You may also get some of the other possible results reported on so it very interesting indeed to be on peg I think. As for fatigue I take Q10 and drink Green tea . You could maybe try this at some point. Bx
Thanks for the tip 💚
Hi Sarah,
Great news. I am delighted for you 😀 .
I would be interested to hear if you have noticed any or much improvement in your symptoms alongside the downward trend in your platelets?
I hope you are enjoying our good weather & also getting to enjoy the outdoor dining opportunities ☘️
No noticeable improvement in symptoms as yet woodlandgarden 🤷🏼♀️ Fatigue is still my biggest complaint. I’m on 90mg weekly so It’ll be interesting to see what happens when platelets come down to a point where I can lower peg dose or take less frequently. Hope would be that whatever fatigue is a side effect of Peg eases off 🤞🏻
Never one for a dull life I managed to injure my knee and am hobbling around on crutches so I’m missing out on outdoor dining and more importantly outdoor drinks 😂 Making the most of the weather though and lots of garden parties with family and friends so it’s happy days here! Hope you’ve been enjoying yourself too 💚
Glad to hear you are responding. PEG usually does take longer, but has the potential for greater benefits.
I started the weekly 45mcg on 5/15. PLT were 677. As of yesterday they are 518. HCT is holing steady. WBC has dropped from 7.12 to 4.16. LYMPH is just a tad low at 1.11, but us a bit from 2 weeks ago at 0.97. On the whole, things looking pretty good.
Wishing you continued success.
So happy to hear that Hunter 💚 Nice to see numbers heading in the right direction and the boost in optimism it brings. It’s the potential for long term improvement that I’m excited about for sure!
excellent news Sarah, so pleased for you. Best wishes, Maz x
Bloods after 10th injection showed figures started to come down. So pleased for you x
Oh that’s wonderful hopetohelp ☺️ Makes the hassle and side effects of Peg feel worthwhile when you know it’s having an effect
Do you mind me asking when you have your next blood test? Mine was meant to be in a month but looks like it will now be 2 months away and haven’t had appointment through yet so guessing it may be longer
9 weeks for me (with option to have them sooner if I have any concerns). Haematologist that reviewed my most recent bloods is happy that all other numbers (especially liver/kidney function) have been consistently good so no need for closer monitoring
Great news. Glad to hear PEG works for you. Did you use HU before?
No HU Sam, only aspirin. Given my age (38) & likelihood of pregnancy this year Peg was the most suitable option for me
I look forward to comparing notes. I hopefully start next Wednesday. Did you suffer hair loss?
Best of luck with it Wyebird! If you feel nervous I’d recommend thanking that little vial of magical medicine for the good it’s about to do for your body, and the power it’s giving your immune system. Sounds mad but a dose of positive thinking helps!
Hair loss was my biggest concern starting! My priorities might be questionable 😂. Have had no hair loss at all, worrying appears to have been a futile effort 😉
You have the right priorities hair loss is mine too. I’ve lost a lot through hydroxi. I wonder if there will be an improvement🙄 x
Will keep fingers crossed for you 🤞🏻
Hi,So I’ve been to the hospital. I was told to go away for 30 mins and then pegasys would be in clinic and I’d be shown how to inject.
40 mins later I get asked to fetch it from pharmacy. (Only given two and not 4.)
Had to wait a further 25 mins.
Returned to clinic and waited and waited. At least 40 mins passed so I requested an appointment and then left without training.
I cut off my nose to spite my face. I was mega upset. Moreso as it looks like my platelets are on the rise again and so I’m presently on 3 forms of meds with no reduction in the other two to compensate for the introduction of Peg.
Went to my neighbour’s still livid over the hanging around and platelet rise.
Between us I did it🤣!!. I stabbed she put the plunger in😀. It didn’t hurt at all. I did ice the area first though.
Nurse phoned to apologise over delays in clinic, bless her-
All fine the annoyance I felt was most probably to my advantage as my adrenaline was still pumping and helped no end.
🤗🤣
👏🏻👏🏻👏🏻👏🏻
First one is the worst one and you smashed it! Well done! Hope you sleep well tonight 💚
So glad it's working so well - please keep us updated - I'm a few weeks behind you with starting pegasys, blood test next week and hope my results are going downwards.
Will keep fingers crossed for you 🤞🏻
It can take up to a year to see results on Peg so keep the faith 💚
Thanks everyone for sharing how your doing on Pegasys! I started Pegasys in April with 45mcg given weekly. Almost immediately my ALT (liver enzyme) sky rocketed. I took a 6 week break to get the ALT number down. My Hematologist wasn't going to give up on the drug because it was working in bringing my platelets, whites and HCTs down. He cut the dosage from 45mcg weekly to 22.5mcg weekly and I'm happy to report that the much lower dose is working! Liver is now happy and my numbers are slowly going down. I guess I'm sharing this because I've read that 45mcg is the absolute lowest dose one should be given for therapeutic benefits BUT remember there is always exceptions!! I'm one of those exceptions. Everyone one of us with PV is different and differ with how we handle and respond to drugs. I've been extremely fit and in-shape my whole life. My Hematologist said I'm like a fine tuned machine and very finicky to what is put into it. In terms of someones question regarding hair loss, I have noticed more strands of hair coming out-thinning as well as hair being drier. Maybe its just that I notice it more because my hair is long. It's hard to tell. Thanks again for all your sharing! Take care. Kerry from Alaska!
Nice to know the dose can be reduced even further if necessary. Thanks for sharing
That’s really useful info Kerry thanks 💚
So glad to hear that Pegasys is working for you!I've been on Pegasys for about 7 months now and my platelets went from 1.4 mil down to 480 so I'm seeing very good results other than some hair loss. I take 90 mcg every other week. Good luck to you!
That’s a fabulous response CAOR! Delighted to hear it’s going so well for you ☺️
Did you begin with weekly doses and then reduce to fortnightly? Curious to know how/when people start to lower Peg intake.
I think I saw on an older post that you had flu symptoms initially, has any of that eased for you?
Hi and yes I started with weekly doses and I had flu like symptoms for a day or so afterwards so I asked my doctor if I could switch to every other week. My platelets have only gone up a very small amount, like 50 since switching so my doctor is ok with it. I don’t have flu like symptoms as often anymore so I think my body is finally getting used to it. I wish you well on it. It takes some getting used to but it’s not bad once you do it and your body gets used to it. Good luck on your journey!❤️
Great to hear! Thanks CAOR 💚
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