1st dose Pegasus done

[Sprat19]

Well , I finally had my 1st dose 45ug peg lunchtime today. Not felt anything as yet and injecting was surprisingly easy. So will see what happens. I have MPL ET age 61

[EPguy]

Wishing you good progress. There's lots of posts lately on our INF journeys, generally good things. Did you get an allele burden %?

[Sprat19 in reply to EPguy]

Apparently it was 26% back in September. Let’s see if it changes

[FG251]

Same dose as me - 14 weeks in, no issues. Good luck!

[Sprat19 in reply to FG251]

Any change in your counts yet?

[FG251 in reply to Sprat19]

My haem called me, unexpectedly, after only two weeks into treatment to say I’d responded well, although as I was still on HU, we couldn’t ascertain what was responsible for what. At that time my platelet count was 390-ish, but at the next count it had fallen to 337. I stopped HU 5 weeks ago and have a blood test next week, so I’ll know soon enough whether there’s been any rebound or whether the Pegasys has fully compensated for it. I’ll probably post an update when she gives me the result on Apr 19, so maybe look out for it - and fingers crossed!

[Sprat19 in reply to FG251]

👍

[AndyT]

Well done! I’ve been on Pegasys for nearly 7 years now and it’s been great - very good control of my counts and no significant side effects

[Sprat19 in reply to AndyT]

Hope to have a similar response

[Buddhability]

This evening I’ll have my second INF dose. My first was the week before last and same as you 45ug. I took it at the hospital to check I was doing it all right. About 5 hours later, back at home the flu-type symptoms hit me hard. I was kind of expecting that. What disappointed me was the next morning getting a migraine. I’m a long time sufferer, and it made for a very unpleasant day. The day after is usually my migraine hangover day and this was no different although I wondered if the INF was adding to my general malaise. It sure did feel brilliant to feel fine the next day. Did you feel no ill effects?

I hope so!

I’m going to do my second injection late tonight and sleep on it. Fingers crossed that I don’t repeat last time with a follow up migraine.

My overall feeling is that I’ll give this a while before drawing any conclusions. But I wish you Sprat18 a very smooth journey!! Thanks for sharing.

John

[Sprat19 in reply to Buddhability]

Hope your 2nd injection goes better than the first. I have had absolutely nothing. Probably regret saying that next week!

[Buddhability in reply to Sprat19]

Thank you!! My hope is you’ll be just fine!!

[EPguy in reply to Buddhability]

I've had a slight occasional headache since starting Bes. I also can get migraines, but this is a garden variety type headache. In my case this aspect of my journey is not a big problem, but it is new.

Interesting you note malaise, this is my issue since Dx no matter what I take or do. We're awaiting the INF magic to kick in.

[Hopetohelp]

Welcome to the peg club. Please let us know how you get on

[Sprat19]

👍

[Beup]

Best of luck! to you and please keep us posted on future progress. I read your bio and we have some similarities. I too had pain and swelling in my toe that led to blood tests and dx of high platelets/ET. I also have a similar AB %. I am, however, JAK2 +. I read your post on diet and was struck by your stabilization of platelets. You mentioned low grains and sugar, high veg/fruits, and turmeric. Could you share what you include in your diet for fats and protein? I am trying to be proactive as I await future tx with medication. My dx was recent. Thanks so much!

[Sprat19 in reply to Beup]

Hi I usually eat either eggs or yogurt and fruit for lunch. If I am working salad with nuts , cheese or tofu and advocado for lunch. If at home soup.

Evening meal chicken, fish beef stew etc with lots of veg and root veg. I try and have veg where the rest of the family are having pasta or rice etc. . I am not as strict as I was in the beginning and practice 1 Meakin 10 so if I am out I eat whatever then try and ensure the next 9 meals adhere to the principles. I tend to use coconut oil butter and olive oil and have full fat yogurt and milk. Hope that helps.

Jackie

[Beup]

This is very helpful! I like your 1 meal in 10 rule for balance(and joy!). Thanks so much and I hope you are still feeling ok post 1st dose.

[hunter5582]

Good news. You are right that the injection is no big deal. Wishing you success with the PEG.

[EleanorPV]

After over 6 years I can still remember my initial fear of PEG and the injection.

PEG works well for me. Remember PEG is slow acting therefore it might take a year before you have full results.

[cvita71]

Great to hear this, I'm starting next week with Peg, hope to treat it the same as you. I'm PV, on HU so far, but very tired because of venesuctions, hoping to have more energy soon.

[Sprat19]

Well had my 1st follow up platlets now 523. Best they have been over a decade. Neutrophils also dropped though to 1.5 so trying 45 every 10 days for the next month. No other side effects and feeling good