Over 20 years.

[BloodZero]

Just wondering if anyone has had ET longer than 20 years? If so, what did you experience over this time? How did the disease progress? What changed for you better or worse?

[Hidden]

I met a lady at the wellington seminar with Dr Rubin Messa from USA. She told me she had ET for 30years!! She looked brilliant!! Not to say inside she was. Everyone there seamed to look great!! 'The hidden disease' I myself have had ET for 3 years! Only a baby compared to some.

[hall2]

Hi I was first diagnosed about 20 years ago. And I've just been on aspirin with no problems in that time. I've reached the age of over 60 when risks are seen as higher and platelet count seems to be rising. I'm awaiting a BMB and doctor has told me I'll probably need to go on further treatment. Also now confirmed that I'm JAK2 negative and CALR2 positive. Some people on here have had this much longer.

[graymare]

Hi BloodZero, I was diagnosed with ET in 1990, had BMB in 1993, no JAK2 or CALR tests available in those days. Had only aspirin till 2011 or so, then platelets started rising quickly so was put on interferon alpha 2a. Platelets came down to normal in about 6 months and have remained in that range ever since. I had some fatigue before interferon but was very active and lived a busy life. Interferon and I battle it out a bit, main side effect is painful leg muscles. Have had JAK2 and CALR tests since---- -ve both times. I am 78, mostly healthy, can't walk as far as I could because of leg muscle pain but can still go several kms and enjoy my bird watching and beach/bush walks, everything at a slower pace (might be the 78 years). Biggest pest is travelling with injections and keeping them cold, but I have managed it and airlines provide ice when necessary. on v. long flights. I have become more accepting of my limitations over the years, keep busy but mostly try not to overdo things----don't always succeed. Am finding my life with ET satisfactory---Christianity helps there----health remains pretty good so far. Don't despair----if one drug doesn't suit you may try another, but I thought interferon sounded best in spite of side effects, so haem allowed me to choose that. Good luck with your ET and be happy!

[bms0hes]

Hello, I was diagnosed in 1997 age 16, I’m now 37 and so had ET for 21 years. I’ve had 2 children during this time whilst taking interferon and I’m not in hydroxycarbamide and aspirin. I work full time and live a full and active life. I’m negative for all known genetic abnormalities e.g. JAK-2, CALR etc.

[beetle]

Hi. I was diagnosed with ET in 1994 and have since progressed to MF. I’m taking Jakafi, have very low blood counts and I’m transfusion dependent. Fatigue and now breathlessness restrict my life somewhat. At diagnosis I had four boys under the age of 12 so I was a very busy person. I worked too. I am now retired which is just as well because I know I am not fit enough to work. I am jak2 +ve.

[catkinspolymer]

Hi Blood zero , I was properly diagnosed in 1996 but an earlier medical showed I had it in 1986 . I am now 73 still quite fit and enjoying life. ET interferes very little in my life. That makes me 32 years so i am the oldest ET patient on this site?

all the best Town crier

[BloodZero in reply to catkinspolymer]

Thanks for your reply. Have you been on any medication?

[catkinspolymer in reply to BloodZero]

Hydroxy now 10 tablets a week baby aspirin. and amlodipine for blood pressure . venesections every 8 weeks or so

[catkinspolymer]

Something I wrote a while ago

MPN Voice Following Home Posts Polls Members About Home My hub Chat HealthUnlocked old age and ET catkinspolymer a year ago 3 Replies From: To: [e-mail] Subject: Essential Thrombocythemia and the RUBBER INDUSTRY Sent: Tuesday, 19 August 2008 Hi Allissia I have searched through my old notes on my case which may be of interest.I am now nearly a 70 year old man living in the wilds of Wiltshire and still going strong whilst living with ET. I started in the rubber industry in 1963 on leaving school and worked for a tyre company in the west of England called Avon, now owned by Cooper tyres of the US. Stayed in the rubber industry another 15 years and then went onto a similar occupation mixing specialist plastics fo another 22 years. Had some visual disturbance and dizzy spells in late 1985 and had a privately funded medical check including a blood test, which possibly showed some evidence of myloproliferative disease.There was some notes on my blood tests where the technician had written presence of " basofils, myloproliferativre desease ?" On recently checking also spotted PCV was 49 at that time. my GP ay the time did no understand the significance. It all seemed to get better and was all forgotten about by me and my GP until 1996 (with a new GP) when I was in serious trouble with high blood pressure chest pain and lethargy. Blood test showed a platelet count just over 2 million and a BMB revealed ET. This was controlled with 18 time 500 mg tablets of HU per week and fell to about 330, 000 where it has been for the last 12 years. Recently however it has fallen to 270,000 and hem has reduced HU to 13 per week. PCV has risen to 47 and I am now having a phlebotomy every 6 weeks or so to keep it below 45. Back in 1985 I had two small children and I just got lucky that I did not have any kind of thrombosis. My girls would have suffered without their Dad.? Generally today I keep well but cannot do an 8-hour workday. Managed to semi retire in 2000 and now fully retired but doing lots of charity work with our entry to Britain in Bloom.I am also now the town crier. However one shock was that when I retired I rang a Swedish friend who i had gone to college who also worked in the the rubber industry and found he had PV. We searched hard but did not find any significant increase incidence of myloprofilerative disease in the Rubber industry. Perhaps most ironic of all two other close college friends have now died of heart failure whilst me and my Swedish colleague keep soldering on. I also enjoy long (8 week trips) to the Continent with my caravan but have to have a phlebotomy as soon as I get back. To be absolutely honest the ET interfers very little in my life , but it does make you get on with things you want do. all the best hope the spelling is up to the mark. all the best Town Crier Brit 69 years old ET diagnosed in 1996 but some evidence of MPD in 1985 12 times 500mg HU per week baby aspirin every day and amlodopine to control the blood pressure.

[BloodZero in reply to catkinspolymer]

Thanks for your detailed feedback. At present im 44yo and only on aspirin. I was really fit before but not can only manage a 6hr work day 3 days a week as its manual labour work.

[Lilly1958]

Hi, I have Et for 26 years from 1992 , on blood test from 1997, and from 2002 i now I have ET and Jak-2poz. 10 years I don't now I have ET.,but my platets was stable 500. Yes I have simptom migrene and I lost vision 3 times for 30 minutes , first time hapend 1992, but I was only 34 not went to JP. , and years I have migrene ( now not,) . After 26 years my hct go to 48 and I start venosection any interferon weakly .Now I have both Et (platets 423 ) and PV . Becouse I 60 years old I must start With venosection and interferon.I have normal life , but from 2002 I start eat helthy and lot fruit , lot water ( tea with 3 oranges , 1 lemon and 1 spoon honey , 2 litro daily,), and no stres, becouse only one times my plates from 500 go to 670, from big stres. After I take care and everting ignoring , and I live normal live . For 24 years in Australija iwas 6 times in Europe, no problem, always socks in plane and 2-3 litre water and Woking lot.My hem. Told me Et sametime transver in PV after years or directly go to MF agen for years , we never now when this hapend 10, 15, 20 or 25 years .I very happy becouse I was 26 years only on aspirin from 2002. I houp I help with samting , Best wishes, Lilly !

[BloodZero in reply to Lilly1958]

Thank you for your detailed reply Lily. Im trying very hard to work on stress and anxiety. Im 44yo and platelets about 1200. Have known about my Et for about 10years.

[Lilly1958 in reply to BloodZero]

Hi, I thing you platelets Is hight , my was stable all 26 years 430-500, and only one times when was (2 month) 670, my hem. Told me if go over 1000, he be put me on interferon , but platelets go back to 500, he told me never so person with Jak+2 , and platelets go back witaut medecin , interferon or tablets . Maybe you can go to another Heamatologist and ask for second opinion . I was , and he told me different , and he not be start with interferon and venosection becouse I have hct only 48 , and platets 430 , but I'm 60years old and start with medication ., olways looking for hematologist undestend MPN disoda. I live in Melbourne (you are from aAustralia) and in Monash hospital you have good hematologist . You very yang , in you ages I was very fit and working full time , 8 years -4 days 12 hours lot Woking , but now with interferon not really god . Take care !!! Best wishes my sister on blood!!!

[Paul123456]

I note that most of the replies on this thread are from people with JAK2-ve?

What about ET and PV JAK+ve patients?

Time frames are tricky to compare since many of us diagnosed a long time after earliest symptoms.

[Strumpshaw]

Hi BloodZero, I was diagnosed in 1992 (aged 36) with ET having first been to my local General Practitioner (GP) with painful toes. I have the CALR type 1 mutation. Over time, I have been on most of the common treatments i.e. Hydroxycarbamide (mostly), Interferon Alpha (three times weekly), Pegasus interferon once a week, Anagrelide (daily), and aspirin daily from the beginning. As far as the effects of ET are concerned, they have been minimal –Interferon caused more fatigue than anything else! Unfortunately about two years ago the ET transformed to secondary MF (Post ET MF). Due to an enlarging spleen I have been put onto Ruxolitinib, which has shrunk the spleen a bit but is lowering my blood counts a little too much. I am still working 4 days a week but plan to retire in the next 18 months, then live life to full whilst I can!

[robbjoy]

Hi I was having symptoms back in 1995 but not formally diagnosed till 2000. I was in nursing school identifying my blood cells under a microscope. All I could ID were platelets on my slide! I asked my instructor and she mentioned for me to see my doctor. Fast forward to 2000 and BMB later, I was finally diagnosed with ET. I am on no meds but baby asa. Worst symptom I have is fatigue and bone pain.

[MoNut]

I’ve had ET for nearly 27 years. It didn’t bother me too much, but what I am really worried about is what Hydroxy is doing to me, ulcers, rashes on legs among other things.

[AmandaS]

I was diagnosed with PV in my twenties but later the diagnosis changed to ET. Felt fine for 40 years on Hydroxycarbamide and aspirin. Now coming up to 65 and have recently added MF. My most burdensome symptom is the pruritus - feels like millions of pins sticking in my legs. But I feel fortunate to have had the 40 years with hardly any problems (I have a gene mutation that combined with the ET to give me a blood clot in the splenic vein and a TIA. So no spleen for the last 40 years makes me wonder how my body will cope with MF. So yes it is possible to have ET for a very long time - I've had 2 children with it and now have 3 grandchildren to keep me active.

[BloodZero in reply to AmandaS]

Thanks for your reply. Its interesting to read about peoples long term dealings with ET. So just to clarify, you had your spleen removed 40 years ago? If so, thats amazing.

How did you know that you had transitioned to MF?

[AmandaS]

Last year Hydroxycarbamide, my friend for over 30 years, stopped keeping my blood counts under control - some too low, some too high. So I had a bone marrow biopsy to see what was going on.

[BloodZero in reply to AmandaS]

What was the outcome of the biopsy?

[AmandaS]

That I had MF but luckily not some of the gene mutations that predict a faster progression.

[BloodZero]

Thats good. Though i was aware of a few gene mutations of which im JAK2+, i didn't know they mean a faster progression. Scary.