Starting Interferon

[AndyT]

Well that was an interesting morning! Went to my appointment knowing I'd probably need to start treatment as my platelets have been climbing for a while - had decided to opt for HU and negotiate a delay of a couple of weeks as I've got a very busy October. Ended up opting for Pegasys instead and injecting my first dose there and then in the clinic..! So far so good with no side effects noticeable - back in 2 weeks to see if it's started having any effect on my platelet count of 1100+. After 13 years of aspirin only it all seems a bit odd but I guess I'll get used to it and if a once a week injection does the trick I'll be happy..!

[Cdseiter]

Best of luck to you. I've been on pegasus for almost 6 mths with almost no side effects. It is a good idea to make sure you stay well hydrated as the interferon has a tendency to dry one out.

[AndyT in reply to Cdseiter]

Thanks for that advice - definitely worth knowing...

[tracey13]

My husband gets a monthly venesection last year he went from April to September without needing a venesection then by Christmas he's needed them monthly.

He's usually more tired after the venesection for the first week after then he's fine. Mind the week leading up to his appointment he says he can tell he needs a pint of blood off.

His platelets have been around 650 to 700 he's trying for as long as he can to keep of the hydroxy. He said he's managing well for now.

He's due to see the consultant in two weeks we hoping his bloods have dropped. His HTC was 0.47 last month the consultant wants it to be 0.45!

Tracey

[Klys in reply to tracey13]

What is venesection? Is it expensive?

[tracey13 in reply to Klys]

A venesection is when they drain a bag of blood off you. Same as giving blood process.

Downside is the blood can't be used for a donor it's got to be scrapped!

[lizzziep]

Good Luck! X

[Klys]

Hello this sounds good and I hope all goes well for you. May I ask what Pegasus is? I am newly diagnosed and when offered HU decided to hold off as I would like an alternative which they didnt offer me. I am 64 perhaps my age, but otherwise fit with platelets of 700 now and taking asprin. May I ask your age? My haemo said I fitted the criteria for high risk due to my age?? Feeling confused and rather nervous.

[Hidden in reply to Klys]

Hi Klys, im 63 , plateletts rising every few month , age makes a difference i was told because we are at the age where we are more at risk of health problems which can come on in later life such as High Bp ,blood clots and the like so we need to listen to what the heam advises , but if we are otherwise healthy its even better for us if we can just manage with asprin for long as we can it all depends of each indiviual i think dont be confused. your find out alot on this site , i dont know what pegasus is either! but there are various treatments out there , i have ET a t risk of blood clots as i also have a heart valve issue but im told that asprin only is fine at this moment in time ! im also jak2+ plus dont know what that means just said it confirms a MPD best wishes Holly

[Cdseiter in reply to Hidden]

Andyt has it right on Pegasus. As for jak2... It is a spontaneous genetic mutation. If you are jak2+ then you definitely have an mpn. If you are jak-, it is still possible but less likely. Jak2 gets a lot of attention b/c it was discovered only within the last 10 years or so. It is considered a signaling pathway that may play a critical role in all cancers. The trick is that the docs have figured out how to block the jak2 signal, but they are not sure they fully understand all of the impacts of turning it off. Jak 2 along with CRISPR gene editing technology are on the cutting edge.... Keep an eye on them.

[mickey64 in reply to Hidden]

Hi Catwoman, I'm 64 have only the only one risk over 60, may I ask what your platelets are? my highest have been 812. I have low bp and low cholesterol. I am jak2 positive. I had AFIB once three years ago and they are not certain why I had it, it came right after my operation, heart dr thought inflammation from the surgery, reg dr thought they nicked my thyroid which made it hyper thyroid, never did find out, never got it again.

[Hidden in reply to mickey64]

Hi Micky64, my plateletts 3 month ago were 546 they were always 150 before i had ET im jak2 pos and last month was put on a bp tablet and i take low statins i have heart problems in family and i have heart valve regurgitation . my brother as AF im due back to heam in November she may put me on HU depending what plateletts are but i been taking Asprin ! sounds like your Af was a one of ,lets hope so eh , but my blood work all been okay apart from rising platelets so long as they monitor us well and we help buy watching our lifestyle etc we shouldnt be too bad you take care best wishes Holly

[Klys in reply to Hidden]

Cat woman hi my haemo didn't say it was okay with aspirin only! He said I was hiGh risk and aspirin not enough! My platelets are 700 now and I am otherwise healthy with normal Bp etc. I wish he had said it was okay with aspirin to me hence confusion! I would like to continue with aspirin too but he didn't give me that choice. I wonder why?

[Hidden in reply to Klys]

Hi Klys, i guess reason being ,that your plateletts are higher than mine , i was nearly put on HU in July but only raised a little Asprin alone wont be enough your heam is right

[AndyT in reply to Klys]

Hi Klys, Pegasys is pegylated interferon alpha, which means just one injection per week and therefore far less risk of side effects. I'm 59 so was concerned about taking HU for maybe 20-30 years - Pegasys has mainly been given to 'younger' patients so far but like so many things late 50s and early 60s are becoming considered relatively young so my haem and I agreed it was right for me. My counts are 1100 plus and any one of a count of 1000 plus, age over 60 or a thrombosis put us into the high risk category. It's early days but I'm happy with my decision so far and suggest you discuss all options fully before deciding what to do. Lots of useful info on the MPN Voice website too - hope it goes well for you.

[mickey64 in reply to Klys]

whow we are the same age and I am having the same feelings as you, mine have been around 740, but last week got sick and it jump to 812. I want to hold off also, are you having any symptoms are you Jak2 positive?. I had a bone marrow last week and go back tomorrow, I know he wants me to go on HU, but I would rather try this Pegasus if its better. Mickey

[Hidden]

Good luck! I am on Pegasus too! All good here! 😀

[AndyT]

Thanks to everyone for your feedback and good wishes - I'll let you know how it goes..!

[mickey64]

Hi Andy I'm new to the site, can I ask how old you are? Can you tell me what Pegasys is??? So you were on nothing but aspirin for 13 years?? how high were your platelets. Thanks, I'm 64 new to the site, new to the ET, highest platelets are 812. Hemo Dr wants to give me HU but if there is a better solution I would rather opt for it. thanks Mickey

[AndyT]

Hi Mickey - I'm 59, diagnosed 13 years ago and CALR+ - platelets were 600+ at diagnosis and 1100+ now. Pegasys is slow release interferon alpha so just one injection per week. Definitely discuss all options with your haem and review pros & cons of HU v Pegasys- hope all goes well for you. Andy

[crapaud]

By the look of it this Pegasys 2alpha is an interesting thing; I have MF so my red and white blood counts were low and my platelets were constantly Below 50!

I stopped Pegasys 6 months ago to prepare for a bone marrow transplant I had 2 months ago, but whilst on Peg I had no unreasonable side effects.

Best of luck in your choice

[AndyT in reply to crapaud]

Thanks crapaud - hope all is going well for you since your transplant

[AndyT]

Went for my 2 week check up today and counts are down to 839 after just two 45mcg doses of Pegasys - better result than I'd expected, so very encouraging. Went up to the 90mcg dose today and thankfully no side effects yet - going to try that every 10 days for next 5 weeks and see how much further my counts come down - so far so good and very pleased my haem suggested going with Pegasys...

[Mandy-moo74]

Hi AndyTI have ET and was diagnose 20+ years ago, tried a few medications and stayed on I feeder on and recently transitioned onto Pegasys this last year and a bit. I have found the drug to work well co trim what needs to be co trolled with very minimal side effects and you soon get used to injecting yourself, comes as second nature, I hope your transition into it is smooth like mine has been

[AndyT in reply to Mandy-moo74]

Thanks - I’ve been on Pegasys nearly 6 years now and it’s been great. I just inject 45mcg every 4 weeks now. Hope it’s working well for you too ...

[Mandy-moo74 in reply to AndyT]

Hi AndyTYes is working well for me too.

My dose is higher than you I inject 90mcg every 2 weeks but seems to be working fine and I have no issues keeps my blood counts stable enough so I am happy