ET sufferer.

[Diam]

I'm new here and I have been suffering from ET for the last 2 1/2yrs. It have been taking 1500gms of Hydroxycarbonmide daily and some days I feel exhausted along with other side effects, hair falling out, chronic ulcers, my feet constantly feeling like they are burning. My platelets have now come down from 13000 to around 450 to 600 which seems to be a stable count for me. I would love to hear from other ET suffers

[socrates_8]

Hey Diam ...

When I was diagnosed with Post ET (pre-fibrotic) MF in May this year, I too commenced my med's regime with low dose Aspirin, and 500mg pd of HU. This then doubled to 1000mg pd, (part of the reason for this was because I had a TIA (minor stroke) in August 2015. Which they say places me in the 'high-risk' category for a stroke etc...

However, HU did not work well with me, and I then asked to put on another alternative...

My blood platelets (BPTs) were initially at 1700, and they were last recorded at 803 circa 6 weeks ago.

I could not cope with the variety of side-effects that I seemed to suffer from on HU, and as a result I am now using Interferon injections every two (2) days, and that dosage is set to double if my BPTs have not dramatically improved by next week...?

It's not all roses on Interferon though either... My mind seems to be generally clearer although I do still suffer from extreme fatigue, nausea (from my enlarged spleen), and pruritus etc...

I also suffered from mouth ulcers on HU, that have largely cleared up since switching med's.

However, as of this last week or so, my aching bones have intensified in their pain regime, for some unknown reason.

And I am barely coping with that pain...

Invariably, I wake every night and sit on the edge of my bed until I can start to fade off again, one more time... Sleep for me is not a good thing.

Ideally, I would love to be able to try the Ruxolitnib, but at the present, I do not meet the International Scoring System criteria...

Diam, suggestion, if you are not happy being on HU, ask your specialist about trying something else...

Best wishes

Steve

(Sydney)

[Diam in reply to socrates_8]

Hi Steve. Thank you for that. I am not due to see my Consultant till next month, so will ask him. My ulcers have now stopped( hopefully) due to my dentist telling me to stop taking my inhalers so maybe I was blaming Hydroxycarbonmide unfairly..... But I need my inhalers so a double edged sword.

Hopefully you will reach the criteria scoring for Ruxolitnib at some point.

Marigold

[socrates_8 in reply to Diam]

Hey Marigold...

You are most welcome. Best of luck with changing your Meds. My mouth ulcers have definitely cleared up since I stopped taking HU.

Steve

(Sydney)

[SuET2017]

Hi, I am ET (triple negative) recently diagnosed. I chose to take Anagrelide rather than Hydroxy, apparently it is a bit slower to work and initially I had side effects (nausea and palpitations) but they have eased off somewhat. My platelet count was 1300 but has come down to 980 in 2 months. I still get achy legs and fingers and I still get random bruising and blood in my urine, but that is all being monitored. But the best thing is that my fatigue has lessened. I get tired days but it isn't constant, which is life changing. It is good to be on this forum - don't feel so alone in it. Take care

[lizzziep]

Hi, I have ET, I was diagnosed 5 or so years ago. I was on Hydroxycarbamide for over 3 years. Then I got horrible ulcer type wounds on my feet and the burning feeling that you get. It felt just like someone was pressing a red hot iron on my feet. I found it impossible to walk. I saw a podiatrist and a dermatologist who said the problem was the hu. I now take Amitryptiline for the pain in my feet - which is nerve damage. It took a couple of weeks for that to kick in but the relief was fantastic when it did. I contacted the haematologist who saw me straight away and changed me over to Anagrelide. Over the few weeks I've been taking it my feet have healed really well (apart from the nerve damage) I had had the open wounds for around 4 months. I have had a few "teething problems" with the Anagrelide but things seem to be settling down now. When I started on hu my platelets were over 1000, dropped down to normal levels, rose again a couple of times, but they were down to normal levels a couple of weeks ago.

My joint pain is constant, mainly due to severe arthritis in my knees but made worse by the ET. I did lose some hair on hu but not too much. If you're staying on hu ask about Amitryptiline for the foot pain.

Best wishes

Lizzie

[Diam in reply to lizzziep]

Hi Lizzie. My feet this year have started to cause real problems. Skin peeling off in chunks and splitting, so painful. Also I get red bluster type spots that turn very painful once they go down. I have all sort of creams to put on but nothing seems to work. My foot burning only seems to come at night, sometimes not too badly other times it can be so painful. Will see my consultant next month about changing drug but in the past he has been reluctant to do this. Will have to wait and see.

Marigold