Hydroxycarbamide

[PhilReade]

Hi it’s taken two years on hydroxycarbamide to get my platelets to 400 has anyone else had this experience?

[awlancaster]

Yes, me too... Exactly so.

[PhilReade in reply to awlancaster]

Thanks even while on hydroxycarbamide 1500 mg daily asprin allopurinol and Clopidogrel I have had DVT bleeding from stomach blurred vision and blackouts

[Wyebird in reply to PhilReade]

So sorry to hear that PhilReade. I have mouth ulcers and constantly aching limbs along with a permenantly depleted energy level. I have also recently noticed occasional indigestion after taking my meds st night. ( I’m on 16 x 500mg a week)

Has your doctor given you anything for your stomach. I’m on lansoprazole.

Hope things improve.

[PhilReade in reply to Wyebird]

Hi thanks for your reply yes I’m on pantroprazole 40 mg I also had a splenectomy in 2014

I take meds for blood pressure and VK penicillin along with statins my energy levels are also depleted I’ve not worked for the last 4 years due to this diagnosis of E/T and the complications

[Wyebird]

Oh how awful. I retired at 57 felt I’ll at 59 diagnosed at 60. I know I too wouldn’t be able to work. I’ve not had your complications. I wish you well

[forwardocho]

I was diagnosed in Jan 2016. It is only from November last year that my platelets have been in normal range. This was due to a lot of chopping and changing of my chemo dosage. My dosage is now right but the moment I drop a tablet, they shoot through the roof!

[Andrew8]

Hello Phil,

I was diagnosed with ET in April 2016, put on hydroxy', but in December 2016 developed severe fatigue. My Haemo specialist denied any connection, but the fatigue got worse, and in early 2017 , I was changed to analgrelide, but the fatigue continued, still my Haemo't denied it was a drug problem. I was not convinced so saw my GP who immediately diagnosed abnormal heart rhythm (listed possible side effect of hydro and analgrelide ) - immediate admission to cardio unit at local hospital, My Cardiologist was surprised to say the least, ( raise eyebrows etc) that my Haemo't had never checked pulse, or blood pressure. As I was about to be discharged after 7 days treatment, the haemo nurse came running after me wanting me to see the Haemo't within the next few days . I was then booked in within 2 days for another bone marrow aspiration, which the showed the ET had changed to myelofibrosis ? , so I was changed on to ruxolitinib , which I have taken at the rate of 20mg twice per day.

After further cardio treatment a second cardioversion at the end of September 2017 has brought the abnormal heart rhythm under control with Amiodarone Also taking aspirin , rivaroxaban, furosemide and omeprazole.

Developed shingles symptoms 3 August, still not rid of rash, but gradually improving.

So I would suggest that if anyone is on Hydroxy' or Analgrelide, if they experience fatigue they should ask for an ECG.

It would seem that my ET was caused by long term exposure to benzene. Oil companies keep that one quiet.

[PhilReade]

Hi Andrew

Sorry to hear of your symptoms and lack of support off your Haematolygist you obviously did that right things with going to your GP ect

I am still under the TIA clinic after recent loss of vision temporarily in my left eye back in September 17

I’ve had a 24/7 heart monitor which shown heart fibrillation!! So that’s interesting what you’ve had through the hydroxycarbamide

I’m on 1500 mg a day statins and asprin and Clopidogrel

I had a splenectomy in 2014 as my two previous bone marrow tests was negative prior to my splenectomy professor Abtul Mehta at London royal free hospital told me this was due to chemicals causing severe and unusual symptoms

Eventually in August 2015 after my platelets went to 945 and I’d had an angina attack and Haematoma they tested for Jak2 which came back positive!!

Even on hydroxycarbamide I’ve had a DVT twice and blood in my itinerary through stomach bleeding

I’m on pantroprazole 40 mg daily as well as Irbesarten 150 mg and amlodipine 10 mg as my blood pressure was 178/101 prior to pre opp

The skydrol I worked with contains Benzene and Mastinox had toluene strontium chromate barium chromate petroleum and Xylene now substituted for non toxic Mastinox!!

I’m currently in court with Airbus regards all the cocktails of chemicals I was exposed to in my 15 months contract

I’ve had a professor in toxicology look into everything and occupational hygienist which all point to chemicals causing my ET

I also was lucky I gave blood prior to my employment at Airbus

I hope you have a claim as you’ve certainly gone through the mill with your health