Update on vitamin 12 and my treatment plan for PV diagnosed in December 2022

[Blonde25]

Hi everyone

I hope you are all ok

I wanted to update you about the vitamin 12 to prevent mosquitos bites . Really sorry but it's vitamin b1 not 12 🙃 I got it wrong but my consultant has ok me to take it short term .

I saw her yesterday and she is on the MPN list of specialists.

I've been on 45 peg interferon since February every two weeks but my Hematocrit level is still at 49 so hence needing a venesection in may and also needing another one now .

My consultant said I need to increase to 90 micrograms of peg interferon every two week for the next 6 weeks but if my Hematocrit doesn't fall to go to weekly injections.

I wanted to ask if anyone else needed higher dose of interferon and why it's probably not made a difference to my Hematocrit levels 😞on the 45 microgram dose . I'm a little anxious that the interferon wont give me a positive response 😞 but trying to stay positive.

Dr Garg as prescribed blood thinning injections for my flight to Cyprus . Can I ask if anyone else as put injections in the hold luggage rather that hand luggage , the blood thinner injections don't need to be kept in a fridge like the peg interferon , she advised I take it on the day of both flights .

Anyway take care all

[Wyebird]

hi, I took 90 of peg every 2 weeks I’m now taking it every 17 days. I have ET

Regarding flying with your injections I took mine in hand luggage. I used a cool bag and ice. I also took a fridge thermometer.

I don’t think you can risk loosing your luggage.

[MAP44]

Hi Blonde25

The quick answers is yes. I was on 90 mcg per week and after 4 months I went to 135mcg per week and for a month up to 180 mcg per week for a month. Everything especially my Hematocrit went into the normal levels .I do not need phlebotomy any longer. I returned to 90mcg per week and have stayed there.

I have been on 90 mcg for over a year and feeling great.

Have a wonderful vacation.😎

[Quercus53]

Hi there, I travel a lot and to weird places!! I always have a blood thinner injection once I'm on the plane, if the flight is over three hours. Luckily my Interferon is only 45, every two and a half weeks, so with a bit of pre-planning I can avoid taking it with me and not have all that faff keeping it cold. There are no minibars in a mud hut in the Amazon or half way up the Andes!

I had an appointment at Guys before I started Interferon and he said that a few days extra here or there don't matter between doses.

I feel sometimes we can get really wound up about how many different counts there are in our blood samples. It can take over your life. I was diagnosed with ET cmpl a few years ago, just by chance, as a result of an RA blood test. Without that I would still be carrying on my merry way and be totally oblivious to the world of blood cancer.

There are more than likely thousands of people who are walking round with numerous diseases, dodgy hearts etc, all unaware and enjoying life to the full. A friend of mine has a different version of ET and her consultant told her that she may die with her ET but she won't die from it.

Hope you get everything sorted soon. I'm off to French Polynesia, starting on Tahiti - two 10 hour flights with a day in San Francisco in between. So that will be a good test for the blood thinners!

All the best, Jillx

[Plate in reply to Quercus53]

Be safe in San Francisco! It has become a very dangerous city! What N interesting life you have!

[Quercus53 in reply to Plate]

Thank you for your concern, I think my daughter and I will be OK, our hotel is just off Fishermans Wharf, and even I would not mess with my daughter!!

As for the interesting life, I really try to fill as much as I can with experiencing new places. There are not many places that are not spoiled by commercial travel companies, so I'm trying to get to them first!! Nest Big One is Papua New Guinea, cannibals and all!

[Plate in reply to Quercus53]

Enjoy every minute of life!

[MAP44 in reply to Quercus53]

Hi Quercus53,

This questions is totally unrelated to health but is about travel. Is there a special credit card you use to collect points to travel or are you in the travel business and get deals? We love to travel although we haven’t gone to far since COVID just got too busy!

Happy trails❤️😎

[Quercus53 in reply to MAP44]

Hi MAP44, how nice to get away from health issues!

I don't have a card that I get points from but I do use the Halifax Clarity Mastercard and the Chase debit card when I'm away as you get a near perfect bank rate from each one, so you are not diddled on the exchange rate. It is a cheaper way to do it than cash but of course you still need cash for less expensive things like taxis, ice creams etc. However, not all countries accept cards, eg Guyana in the jungle villages - but I did manage to find bottles of Guiness at Rewa!!

I am enrolled in various airline frequent flyer programmes, you can spend your miles on a cabin upgrade or to pay for choosing a seat. I also use mine sometimes for a pre-flight hotel or car hire in resort.

I'm not in the travel industry and if I go into a travel agent to enquire about my out of the way places that I want to visit, they just look for a TUI brochure or similar. These places are not true travel agents, they are package holiday agents, which is a whole breed apart!

Part of the fun of travelling is the wonder of putting it all together, hotels, flights, trips into the jungle, days on deserted tropical islands etc No concrete swimming pools and early am towels on sunbeds. Try waking to the sound of rival Howler Monkey packs shouting and growling at each other! How about a bat sleeping in your room or a frog in your toilet!!!

If I can ever help you on your new journeys, let me know, I'm always willing to help if I can xxxxxx

[MAP44 in reply to Quercus53]

Thank you for the lovely reply.

Youngest of 3 just graduating from high school next week so hello empty nesting!

Will definitely be looking forward to some adventures.

Have a wonderful holiday. 🍻😎

[Alexbits]

HCT/RBC is a stubborn thing. It will need some time and maybe dose adjustments. But it will work eventually. I started Peg with 45mcg/week, and it took a few months to see the real difference in HCT levels. It took me three years on Peg to have my RBC more or less stable under 5.00. I'm on a 14-day interval at the moment.