MATEs FORUM

Wow Pete - great post and very informative! I hope going back to HU works for you.
Cheers
Mark

Hi Simon I’m Mark, I’m 66 and I live in Lake Macquarie. I was diagnosed with ET Jak2+ ten years ago and for the last six years I’ve been on Pegasys injecting 67 mcg every 5 weeks with all my blood results pretty much in range. I have to say it has been a brilliant drug for me. I was lucky as ten yea...

Hi Dave I’m Mark and am ET jak2+ as well. I’ve been diagnosed 10 years ago and have been on Pegasys for the last 6 years. In answer to your question, no I haven’t experienced the body tingling side effect that you describe. I was on 90 mgs weekly for the first 18 months and my main and dominant side...

Hi All Just a follow up on my JustMeds delivery. Communication from JustMeds was good. On delivery day I received a text advising the delivery was happening sometime today. I rang the office in Brisbane asking if they could give me a two hour window to narrow down the delivery time, but unfortunatel...

Hi All Yesterday I had my appointment with Jacqui Jagger who is the nurse practitioner at Cecily’s rooms. As we got to the end of the consult, I asked about the Pegasys script and Jacqui said that they now send the Pegasys escript directly to Justmeds, which means we don’t have to fiddle around with...

Thanks Steve for getting this info. I was under the impression that the Pegasys shortage will ease mid to late 2025. Fingers (and everything else) is crossed that that is still the case.

Hi Mitch. I’m Mark and I too am ET and Jak2+ and was diagnosed in 2014 and initially took HU for two years from 2016. I’ve also been taking aspirin 100mg daily since 2014. I took HU until 2016 but it wasn’t a good fit for me and so from 2018 I’ve been on Pegasys (90 mg’s until a couple of months ago...

Steve - the description of your accident is shocking and you are lucky to be alive my friend. I know cycling, particularly on your R3 is deeply embedded in your way of life and as a vital part of managing your MPN. You are a strong man and I know that through your determination your recovery will pr...

Hi Craig I’m Mark I’m 66 and want to welcome you to our wonderful group. I was diagnosed with ET Jak 2+ in 2014 and in 2016 was put on Hydrea after a brain scan revealed some ischemic changes in my brain. Hydrea wasn’t a good fit for me and in October of 2018, was able to swap to Pegasys when it was...

Hi All, After 5.5 years on 90 micrograms with very stable results across all measures for some time, my haematologist has reduced my dosage down to 67.5 micrograms but still injecting 6 weekly. The goal is to see if I can maintain my good blood test results on a reduced dose. The good news is that s...

Hi Pete, I’m Mark, 65 and have ET jak2+, diagnosed in sept 2014 and was on HU for two years from 2016 ( not a good fit for me at all) and in 2018 was transferred to Pegasys. Peg had been fabulous for me. All my blood test results are all normal and within range, my Allele Burden is 5.9% and I’m inje...

Steve, the ride is now two days away and I wanted to take this opportunity to thank you for single-handedly making Sundays ride a reality. Your determination, your drive, your never give up attitude and positive outlook has meant that you’ve made this ride a reality. So I wanted to say a big thank y...

That is fabulous news Warwick!! You’ve worked so hard on your health and this trip is a just reward. Brilliant!!

Hi Allen Re skin issues - I’ve not had any change at all re skin cancers and any that I might’ve had I put down to being 65 and growing up in Perth WA in the early to mid 60’s where there was definitely no awareness of Slip, Slop, Slap. Well done on your platelets and that Peg is going well for you....

Hi Steve. Re a BMB, not at the moment. I’ve booked a F2F appointment with Cecily for mid March to discuss the AD result, so it might be discussed then. In regards to injection times, my view is I’d like to hold it at 8 weeks and see how my body handles that for the time being.

Hi Everyone. Well in my last post I said I was waiting for my blood tests (including my first Allele Burden). Well they have both come in. Remember I was on an 8 week gap between injections and my usual blood test results were all within range. My platelets had gone up from 342 to 368 a rise but sti...

Hi All Just a quick update regarding my journey with Pegasys as I enter my fifth year on it. As I’ve mentioned before, I’ve had a good journey on Peg, with a small number of side effects (fatigue being the main one) that I have been able to manage quite effectively. I’ve maintained my 90 mcg dosage ...

Hi All Just a quick update regarding my journey with Pegasys as I enter my fifth year on it. As I’ve mentioned before, I’ve had a good journey on Peg, with a small number of side effects (fatigue being the main one) that I have been able to manage quite effectively. I’ve maintained my 90 mcg dosage ...

Hi Zeppelin11 I’m Mark and have ET jak2+. I was diagnosed in September 2014 and have been on treatment for the last 6 years. 2 years on Hydrea and the last 4 on Pegasys. I’ve been under the care of Cecily the whole time and her team are a Knowledgeable, great communicators and equally important grea...

Hi all I was reading The Guardian Australia online news today and saw this article re investigations into a possible link between blood clots and Covid. So I thought I’d bring it to everyone’s attention Cheers Mark https://www.theguardian.com/society/2022/jun/27/possible-link-between-blood-clots-and...

Hi Carmel. My name is Mark I live in the lower Hunter and have been diagnosed with ET since 2014. I was lucky to be referred to Cecily in the first instance and have been with her ever. She’s brilliant in a word. I ET and for the last 4 years I’ve been on pegolated interferon (Pegasys). This drug is...

Late May works for me Steve..M

Hi Steve - I just wanted to publicly thank you for facilitating a wonderful online catch up yesterday. The teams platform worked beautifully and was much better than zoom (thanks to the member who suggested it). Being able to share info, assist and support each other and last but not least have a la...

Yep - count me in for that date, but I may be in Tasmania but that hasn’t firmed up yet. So I’m assuming I’ll be here.
Cheers
Mark

Hi Steve. Yes - I’d love to see a cafe catch-up happen. I think the spot our last catchup was held - Pattinson’s Patisserie in St Ives, was a central spot that we could all get to quite easily. Cheers Mark Afternoon Mark... :-D Hope you'll be free also for our Cafe Catchup Date change: UPDATED – SUN...

Hi Warwick! Bloody hell - you’re a new man! Well Done on navigating such a difficult and long journey so well. You are a Superman! - and an inspiration to all of us!
Cheers!
Mark

Hi Allen. Well done on getting boosted. It took me 5
days to get over my Pfizer booster side effects but like you I feel much better re being triple vaxxed. I too will continue to wear my mask indoors past the 15th December easing of rules here in NSW.
Cheers
Mark

Hi Steve, yes - I’ve heard that a variety of vaccines is beneficial. I must admit that being triple vaxxed means I feel confident in being able to handle anything that the pandemic can throw at me. Good luck with your jab and I hope that any reaction is manageable and short. Mark

Hi Nemesis My name is Mark, 63 and have ET and JAK2+. I was diagnosed in 2014 and have been on treatment since 2016 with the first two years on HU and the last 3 on pegolated interferon (Pegasys). HU was a bad fit, but Peg’s been brilliant. I’m well and all my haematology and biochemistry results ar...

Hi Steve. Just a BJ update ( and that’s booster jab by the way). I booked in with my GP last Tuesday for my booster as they have a vaccination clinic that day. Of all the people booked in, there were on,y two people - me and a Doctor who had been fully vaxxed since March who were booked in for a boo...