Lilly1958

[Lilly1958]

Hi, my name is Lilly, I live in Melbourne , and have MPN ET for 26 years, but from September 2017 , I have PV too, start with venosection monthly and interferon weakly ,only my Hct was 48 and my Hem. Put me on drugs first time after. 26 years, before I Was only on cardia aspirin , but I was 34, and now I'm 60 year old.

[Rachelthepotter]

Dear Lily

Welcome to the forum. I ‘ve no experience of the drugs you have been given, but I am aware that the age of 60 is often a cut off point for starting drugs. If you are concerned dontalk to your haematologist.

All the best

[Lilly1958 in reply to Rachelthepotter]

Dear Rachelthepotter, thanks for your massages , I really confusing from my MPN disorders , and I was at second hem. and he told me totally different from my hem. He told me , he still be left me only on aspirin and watching me 2-3 month , and before put me on drugs make BMB. I told my hemo. and he told me BMB will show me I have PV and becouse I have 60 and hct 48 he must samting start .He is start with venosection , and now no good , and I must start interferon too . He think I can have blood clot, becouse I now 60 and hight risk . I read you have MF, I no undestend did you have before ET or PV Or straight MF ? I still learning about MPN . Best wishes to you from my hard !!!

[Rachelthepotter in reply to Lilly1958]

Hi Lilly. So glad you have found this site.

I had MF diagnosed at the start. JAK2+ I was 66 so I started drugs straight away Hydroxyurea, and then when that didn't suit me, ruxolitinib . And now also erythropoetin to give me better haemoglobin results and less tiredness.

This is another good site for information about mpns

bloodwise.org.uk/info-suppo...

So is this one.

patientpower.info/myeloprol...

Your doctors might like to have some of the information too.

All the best

[lizzziep]

Hi Lilly

I have ET, not for as long as you, but my haematologist told me my counts would jump when I got to 60 - he was right! So I was started on hydroxycarbamide, I was on that for 3 years, and after having a reaction to that drug was changed to Anagrelide. I don't have any experience of interferon, but I'm sure someone on here will have. The Anagrelide is controlling my platelets better than the other drug and they are currently in the normal range.

Best wishes

Lizzie

[Lilly1958 in reply to lizzziep]

Hi Lizzziep, Yes you similar me , but I have now both ET and PV , I was like you before , but now I am in 10% people with MPN and have both .I think this is more worse , blood is more thicka , but drugs is similar for both , only you no need venosection . Best wishes to you from Lilly!

[mhos61]

Hi Lilly,

Welcome to our friendly forum.

Twenty six years without any medical intervention other than aspirin is some achievement!! This will give hope to our younger MPN patients. Do you know which mutation you have?

I have ET (jak2+) but diagnosed at age 60 - so as well as aspirin, I am also on hydrea. It suits me well, I have no side effects and it keeps my platelet count within normal parameters.

Mary x

[Lilly1958 in reply to mhos61]

Yes Mary , I am JAK-2 pozitiv , my hem. Make test 3 times in last 15 years, becouse he told me never so people like me , platets was 514 frst time 1997, for 2 month go to 670, and was years stable ,around 450 and last 3 years about 420 , but now is only hct 48 and he think I must start with monthly venosection and interferon . He offering me hydrea , but I can't drink strong tablets .Wery good you hydrea is good for you and platets is normal . I have 4 venosection and always after 2-3 weaks my hct agen same 48-49 , and I must start on interferon , but I still don,t now result from my blood . Lilly!

[Mazcd Partner MPNVoice]

Hello Lilly, welcome to our forum, you did very well not having to have medication for so long, I hope you will be ok now on the Interferon, I can't offer any advice on it but I am sure other people will be able to. Best wishes, Maz

[Lilly1958]

Thanks Mazcd, interferon have really bad side effects 24 hours after , but I lot learn from this forum and I prepare my self , with hot bag , panadol, and next day with Advil (ibobrufen) . I think like Dr.Silver interferon is maybe for now good drugs for PV. I houp very soon in Ausyralia we can have Pegasy interferon . Thanks Maz your really Take care about as on this forum . Best wishes for you too , Lilly

[Johnsb]

I have PV and am on HU to keep my red blood cell count in range along with regular venesections. My goal is to stay under 45% HCT.

Thanks for joining us!

[Lilly1958 in reply to Johnsb]

Thanks Johnsb , we are same , fighting for Hct under 45. My is still 48 ,I compare my result from last 3-4 years and always my hct Was different from 43, 44, 46 and again go to 45, when start with venosection for 2 weaks was 48. Samting hapend with my body , maybe from stres , becouse I still can't believe I must start with drugs , after so many years.I believe wery important is food and stres for our MPN , becouse my platets and hct was hight and agen go in range . I think I must now written which food I eat , saplement whay is so different in years . I must tell you I really take care about food , Eat lot, lot fruit and fresh juice. I houp my next hct will be 44. Lilly !

[Johnsb]

I have had to learn to look at, long term averages and not each reading on its own. Keep up the good work!

[Wyebird]

Hi, lilly1958,

Welcome, you’ve been a sufferer for a long time and now an inspiration to many.

[NedKel65]

Hi Lilly1958 !I’m in Geelong Vic and have ET and PV have phlebotomies in past but ended up anaemic and had iron infusion which landed me in hospital very unwell 😣 about 6 months ago

Been travelling well until now, have had a few symptoms become worse recently which point to MF so more blood tests to see what’s going on !

Will see how this goes ! I have been taking rivaroxiban 20mg daily and Hydroxyurea 500mg daily anx other medication for COPD and have done so for 5 years

Breathing is getting worse lately.

[Lilly1958 in reply to NedKel65]

Hi NedKel ,I'm from South East Melbourne,and I'm didn't long time comment on this forum, becouse I'm member of MPN AAustralia too. After my ET progress in PV I'm was on venosection 1 year but this not working for me,and I'm.start Pegasys (from 2018 is on bps list and for free) and Pegasys put me in hemayological remission for 3 months and not need venosection. I'm was on 45 ,65,and 90 mcg weekly, but last 12 months my cbc is stable and I'm.on 45 mcg every 3 weeks ,and very important my AB is 0.5 to 2% and my PV.is not aggressive, before Pegasy my AB was over 35%.I'm 63 and over 30 years with MPN .I'm ok but I'm have problems with long bones pain only one leg and moving from hip ,knees and joint, but nobody don't know exactly reason,maybe PV or osteoarthritis. If you have any questions you can ask me or message me.Im know with Carl Pegasys slower working but not undestend whay you not on Pegasys ,or combination Pegasys and Jakafi if you have MF . I'm was in problems too becouse put me on venosection but I'm ask for Pegasys,and Pegasys is really miracle immuno drug's for me .BEST wishes!