ET/PV/MPN-U

[Mookat4]

Hi, this is my first post. I have been inspired by others’ positive feedback and useful information sharing to share my journey so far. It was diagnosed with ET last November with platelets in the high 800s, although they have been high since at least 2019. I started taking daily aspirin. In May my haematocrit starting misbehaving rising to 0.53 and since then this has been the area of most concern . To cut a long story short I have required 4 venesections in the last 6 months and now have a diagnosis of MPN-U from Guys - I believe my bone marrow results indicate ET whereas my bloods suggest PV. My symptoms, if I’m honest for years, have been fatigue and difficulty concentrating. Since my last venesection these have become so much worse, constant headaches, leg cramps, some chest tightening, complete inability to concentrate/ think clearly. My local haematologist was adamant these were menopause related but Guys reassured me they could be in part due to iron deficiency. I have now started Pegasys 45mcg every other week- on the suggestion to go low and slow.. If I had relied solely on information on the web the possible side effects would have terrified me but the supportive forum here gave me the confidence to give it a go. It is only early days I know, I am only two jabs in, but so far I have had no side effects and am beginning to feel more human, I know this could just be my red cells increasing and iron improving but I am hopeful this could be a big improvement to my general well-being to relying on venesections alone. If I have gleamed anything from reading your posts over the last year it is that I am trying to be as informed and involved in my own treatment as I can be. My suspicion is that my ET may be transforming to PV but I will take each 3 weekly blood cycle at a time. Thank you all for the support you have all provided simply by posting your views/ information/ updates, it has been much appreciated.

[Lyndjs]

Hi Mookat4 ,

I'm sorry you're going through so much but, yes, this is definitely the best forum, for support. I'm new to peg too. I've had 4 injections so far, and with advise from here, I was able to keep my dose low, even though my haematologist wanted to increase it to 90 after only my 3rd injection. My platelets are increasing up to 860+. I have PV and high iron levels.

I think we're all trying to navigate a minefield, having so much thrown at us. However, this forum and the people are amazing. I know you'll get lots of support from people with far more experience, than I have. We're all learning here from people with a real life experience of MPN.

Welcome to the forum. Please keep us all updated. Everyone's experience is different and we're all learning from each other.

Take care x

[hunter5582]

Hello and welcome. Glad you decided to post. Your contributions will be a valuable asset to the forum.

Your case sounds remarkably similar to mine. I had ET that progressed into PV. Like you, I also had more trouble with the venesection-induced iron deficiency than I did with the PV symptoms. In fact, the iron deficiency symptoms I experienced were similar to yours, fatigue, difficulty concentrating/memory, cold-intolerance, and alopecia. I switched from venesection-only to Pegasys then switched to Besremi when it became available. I feel much better now that I am on th e interferons and my iron levels have come up. In fact, I feel better now than I did 10 years ago. The side effects I have experienced with the interferons have been minimal and easily managed.

Please do keep posting about your MPN journey. Sharing our successes and struggles allows us to both share and receive information and support.

ALl the best moving forward.

[Solyesh]

Welcome and you have found an amazing community for support, information and the ability to just let loose once in a while when needed! You are in great hands (the best) at Guys. Peg has worked well for many and hoping for you as well.

[Spanelmad]

Welcome to the site.All the information I've gleaned from the group has been amazing, always someone who has the answer or will sign post you to a web page.Good luck with your journey and keep posting.As I've found no question of comment is stupid.

[MAP44]

Welcome to our little family.

Feel free to search many topics and find older posts that might answer your questions too.

I have been on Pegasys for under 2 years and could not function without it. As your bloods settle and reduce you will find your sanity also returns The brain fog will lift and you will feel like your old self.

I started at 90/ week, went up to 135 and then 180 for 4 weeks as nothing was reducing. The 180 started the downward trend and eliminated the need for phlebotomy. Regular dose is 90/week.

Different thinking on low and slow treatment vs attacking to regulate. My platelets were high 900.

Get an MPN specialist also, best advice given.

[DougyW]

Hi Mookat4 and welcome to the site. I've gleaned loads of usefull information on here. I will be starting on Peggy in January due to turning 60. Do you get yours from the hospital or a normal pharmacy?

It will be interesting tobcompare notes as time progresses.

[Mookat4 in reply to DougyW]

Hi DougyW, nice to meet you. I pick up my Pegasys from the hospital pharmacy, it’s a bit of a pain, only open week days during normal working hours and parking is always an issue but I’ve been told I cannot pick it up from a normal pharmacy. I agree it will be interesting to compare notes going forward. Wishing you well for your January start.