Good News Day!

[IrishSarah]

For the first time since starting Pegasys my platelets are down to 297 today - bang in the middle of normal range!

Nice to share some positive news that may be a boost to anyone struggling with Peg and not seeing results yet 💚

[IrishHiker]

How wonderful for you😊 very happy you got great news♥️

[IrishSarah in reply to IrishHiker]

Makes a nice change from complaining 🤣

[ggrana]

Great news Sarah!!!! How long did it take you? Just curious because it didn’t work for me at all for six months so my doctor had stopped me from going forward

[IrishSarah in reply to ggrana]

Started to see a slight downward trend at around 13 weeks, took until week 24 to hit normal range. I know there’s people on here who respond more quickly, and others who took up to a year to see a change

[DoubleF79 in reply to ggrana]

Same here. 6 months max dose & nothing. Thankfully Hydroxy is doing the trick. Down from 1500+ to 660 in 8 weeks 👍🏻

[IrishSarah in reply to DoubleF79]

I’m always fascinated by what unique little unicorns we are! Brilliant to hear that you’ve found what works for you 💚

[EmeraldA]

What great news I am so pleased for you! How are the side effcts have they settled down for you?

[IrishSarah in reply to EmeraldA]

Aches and pains have pretty much disappeared since I started taking daily antihistamines and other symptoms are much milder and pass pretty quickly.

Fatigue still a killer! Had discussed reducing peg dose/frequency with my consultant and decided to stick it out a while longer. She’s pretty confident Long Covid is causing the fatigue at this point, so reluctant for me to reduce peg when it’s working so well.

[Hopetohelp]

Thank you for your post. This is why this forum is so helpful! At week 21 myself and figures slightly down but not as much as expected. Consultant wanted me to increase dose but I had a bereavement inbetween last consultation and stated would like to stay on same dose for now which she agreed to. Comparing figures can really help x

[IrishSarah in reply to Hopetohelp]

Sorry to hear that, grief is tough on the body as well as the mind so it’s a good decision not to push yourself too hard 💚 Lots of people successfully taking the low and slow approach to pegasys, plenty of time to up the dose whenever you’re ready. Take care x

[Hopetohelp in reply to IrishSarah]

Thank you x

[ritaandscooter1 in reply to IrishSarah]

Sarah glad the Pegasys is working. I'm one of those low and slow Pegasys users. Started on 45mcg but it irritated my liver enzymes really bad so my Hematologist doctor here in Anchorage cut that dose in half to 22.5 mcg weekly and my platelets are slow coming down. More importantly my liver is happy now. I'm PV with Jak2. It's amazing reading everyone's comments and how different are bodies are with blood disorders and medicine reactions. I really believe that daily exercise and staying in shape has been the biggest medicine for me!! Had my teleconference with one of the best MPN specialists in the US ( Dr. Tefferi-Mayo Clinic) and he didn't want me on any drugs despite turning 60. He recommended 2 aspirin a day with phlebotomys when needed. He looks at the whole patient including fitness level, level of clotting risk and symptoms from PV. It's refreshing to have a MPN specialist who doesn't immediately put you on a drug just because you turn 60 and recognizes a patient who has spent years trying to be healthy. Kerry

[IrishSarah in reply to ritaandscooter1]

It really is fascinating! Great to hear you’ve found a balance that’s working for you Kerry

[hunter5582]

That is great news!! 😀

[Wentry]

Great news, so pleased for you. I’m due to start Pegasys soon, what dose are you on? I was planning low and slow, I’m in NZ and will be self-funded as you can only get funding if you’ve failed HU etc. here. I’m not aiming for a quick result, so can keep on a low dose for quite a while as long as my haem agrees, otherwise I will try a private haem who would support this.

[IrishSarah in reply to Wentry]

Best of luck with it Wendy!

I’m on 90mcg weekly. If you tap my profile name you can see a list of posts I made on the forum. There’s a couple of posts asking others about Pegasys with lots of chat about what dose and frequency people are on, makes for interesting reading!

[Wentry in reply to IrishSarah]

Thanks Sarah, I’ve been looking in your earlier post, surprised to see someone went down to 22.5mcg! I’m aiming to start on 45mcg but thinking about trying 30mcg if my haematologist agrees, I want to give myself plenty of time to adjust and minimise side effects. It’s my choice to start it now rather than in a year or two, most studies suggest the earlier in disease progression that you start the better the results.

[Daisy-May]

That's great news so pleased for you.. 🙋

[MistyBlue2]

Hi SarahGreat news!

But just to give hope to a few more people, it's taken me a good year to start seeing results - so stick with it. (not easy when living with the side effects!) 😊

[IrishSarah in reply to MistyBlue2]

Absolutely! I remember you had to tweak your dose quite a bit. How are you doing now Misty?

[MistyBlue2 in reply to IrishSarah]

I’m good thanks. Still alternating weekly between 90 & 135mcg, but I’ve got everything crossed that I can reduce my dose after my next blood test (hope so - the sweats are getting beyond ridiculous 🙄)

[IrishSarah in reply to MistyBlue2]

Will be keeping 🤞🏻 for you x

[blueseas45]

Great news!

[Magentas]

That’s brilliant Sarah, so happy to hear and especially as I got a new diagnosis today. Good news day as well!!! Totally crazy, first I had ET then I had MF2 and now I have ET again….all thanks to me asking for a second opinion on my BMB!I think I’m a bit in shock, what a rollercoaster but I was absolutely dreading going on Rux and hadn’t committed because I didn’t think my symptoms were right for it yet. So anyway, I’m gonna try the Peg first. Last two blood tests my platelets were 750. What were you yours when you started PEG?

I feel like I know everything there is to know about Rux. Not sure if I should read up on ALL the possible side effects of Peg 😬. Haem just mentioned the depression and fatigue….but it’s worth trying because it least you can quit this one without withdrawals.

How did you go with your side-effects?

[IrishSarah in reply to Magentas]

Wow what a rollercoaster indeed Magentas!! Really shows how important it is to advocate for yourself.

My platelets were in the 800s and on an upward trend.

Side effects were a mixed bag but eased a lot after around 12 weeks. It completely varies - I know some on here have zero side effects or even feel energised after a dose!

I totally understand the desire to read up on everything, I took a similar approach myself but if you’re looking for advice I’d suggest you don’t bother. The list is long and varied and I’ve yet to hear of anyone who’s had ALL of them at once. I think sometimes knowing every possibility can be more stressful than helpful.

Hope it goes well for you, will be sending positive thoughts 💚

[Magentas in reply to IrishSarah]

Thanks hon, loved hearing your input, I think you are right, best to just leave it all alone now for a while and just try it…it’s not like we have a choice.Hope you have more great days ahead! 🥰

[ciye]

That's great 👍

[jointpain]

Hi Sarah, your latest results sound very promising. Do you take anything else during this period to keep the platelets down while the Pegasys does it's thing?

[IrishSarah in reply to jointpain]

Just aspirin, I don’t think aspirin is cytoreductive though, as far as I’m aware it reduces platelet aggregation rather than platelet count. Our knowledgeable friend Hunter might elaborate on that!

[jointpain in reply to IrishSarah]

Therein lies my wife's problem, if left without hydroxycarbamide and anagrelide, her platelet count hits the million mark within nine days, and has hit 1.9 million before starting on hydroxycarbamide. We are trying to get an appointment with Dr Somervaille at Christie's Manchester. But her hematologist is really digging his heels in, and since the magic three years have now passed since her portal vein thrombosis, he is not showing any concern for her health.

[IrishSarah in reply to jointpain]

You’ve both been through the mill this year, you absolutely deserve a break and some medical attention that you can feel confident and comfortable with.

I don’t know how the NHS works, but I imagine others on the forum could offer advice on how to bypass her current haematologist?

I’d bet there’s a patient advocacy service that could offer support. You’ve been carrying a heavy burden in fighting for your dear wife, I really hope you can find some help 💚

[DoubleF79]

Wonderful news! Hope you are feeling great x

[Skyehope]

Always lovely to hear positive news - I'm very happy for you x

[Oscarsboy]

What a huge encouragement for you and many others on the same treatment.

[Kelly2]

You don't say when did you start it?

[IrishSarah in reply to Kelly2]

Started March 2021, on week 23 now 🙂

[Superwoman]

Really good news. 👍👏

[lhammy66]

Brilliant. Great news. I have also just had good news only just into my third week of Pegasus. Platelets normal for the first time in over two years and my haematocrit at 44%. Miracle - I gather it will be a few more weeks before I will know if the rest of my counts are likewise controlled. I am hopeful for the first time in some months. Might even be able to reduce the HU if I’m lucky.

[IrishSarah in reply to lhammy66]

Ah I’m delighted for you! It’s definitely a morale boost when the effort starts paying off

[lhammy66 in reply to IrishSarah]

Yes indeed - it’s a relief given two years of escalating blood counts not controlled by HU for more than a few weeks at a time.

[Cja1956]

Great news, IrishSarah, you really hung in there and it turned out well for you. It’s always uplifting to hear something positive!

[jmctrek]

Thank you for sharing the encouraging news IrishSarah! Gives me a lot of hope when I cross that bridge.

[Kelly2]

What about the side effects? Tiredness?

[IrishSarah in reply to Kelly2]

Yeah fatigue is the worst of it, but I also have long covid in the mix so it’s hard to judge how much of the tiredness can be attributed to Pegasys.

First 12 weeks after starting peg I felt pretty rough. Much easier from week 13 onwards. Now I just feel hot and a bit flu like for 24-36 hours after peg with some aches and pains (anti histamines help)