Essential thrombocythemia

[Tinajane37]

Hi I was diagnosed in 2011 I'm JAK 2 positive & I'm aged 44 years

[eastwood1932]

Hiya, I m ET as well but JAK2 negative. I was diagnosed in 2011 when I was 50. Are you on treatment at the moment or on watch and wait

Janet

[Tinajane37 in reply to eastwood1932]

Hi Janet

I've been on watch & wait since I was diagnosed with 75mg of aspirin every day been ok but the last 2 visits there's been a change in my platelets so they are waiting till my next visit which is less then 2 weeks away x then I'll know more x

[eastwood1932 in reply to Tinajane37]

Good luck with that and fingers crossed all is ok

Janet

[Tinajane37 in reply to eastwood1932]

How are you getting on & are U receiving any treatment ?

Let me know xxx

Take care xx

[eastwood1932]

Yes am on Hydroxycarbamide and Interferon injections plus aspirin and warfarin. Keeps me busy sorting that lot out. Am back at Heamatology in a fortnight so will see where we are then

Janet

[Tinajane37 in reply to eastwood1932]

Bless you x that's a lot to take x hope they are doing the job xx

How high are your platelets?

I go to hospital every 3 months !

But they are very good at addenbrookes x

How is your hospital ?

[eastwood1932 in reply to Tinajane37]

Platelets are 475 which is not too high for most people but because of my history of clots they like me no more than 500. Am at Arrowe Park on the Wirral and my haematologist there is fine, quite business like which is better for me than someone more emotional. Currently on 8 week reviews but have been like you on 3 months in the past

[Andrew8]

Hi, I ( age 68 ) was diagnosed in March this year, feeling tired, had a platelet count of 1050K, put on Hydroxy and Clopi, now down to 405K , but now suffering with a lot of muscle and joint pain mostly lower back and hips, but also arms and legs the day after exercise. I was also on statins but after discussing with GP have come off those. I am currently taking 16 Hydroxy per week , 2 per day, and 3 on two days per week. The day after the 3 dose is often a do nothing day, fatigue and aches. Never had any clot problems. The haematologist consultants (often see a different one each visit ) do not seem to accept that the pains or fatigue are related to the medication. Have looked for complimentary treatments but not found anything which makes any real difference. Any advice ?

[ARW99]

Hello. I'm not sure how this works but I joined three weeks ago (ARW99).

I was diagnosed just over a year ago. Some doctors said PRV but others call it ET (I am border-line). I am on a daily dose of Hydroycarbamide but haven't seen a doctor for over a year although I have regular blood tests and the nurse contacts me to say keep on with the med. Fortunately I am feeling better than I have done for years although there is a certain underlying anxiety that raises its head at any ache or pain. The chemo has brought the red blood cell count down to a normal level and the platelets are "acceptable". I support the chemo with gentle homeopathy, which i think is helping. Good luck when you next go to hospital.

[Andrew8]

I would be grateful for any information about any homeopathy treatment you have found useful.

[ARW99 in reply to Andrew8]

Hello Andrew. Sorry not to have replied sooner.

I would talk to a homeopathist if I were you to see if they can help with the pain. When my son had terrible pain with , M.E., different, I know, he found magnesium helped.

Good luck

Robert

ARW99

[Andrew8 in reply to ARW99]

Thanks Robert. I'll have a look at Magnesium. But since my last post, the week before Christmas I hit the wall. Side effects had been building up, and on the Monday before Christmas I felt absolutely terrible, massive fatigue, back pain, no appetite, and spent 3 days in bed, forgot to take any Hydroxy, and gradually improved. Got an appointment with my GP on the Thursday, had some blood tests which eliminated any other obvious cause, and have continued with single daily dose of Hydroxy since, and feeling much better. Got another blood test tomorrow, so we will see what that shows. Looks like I need a change of medication or have to settle for a higher platelet count.

[ARW99 in reply to Andrew8]

,Dear Andrew,

Very sorry to hear about all that. Good luck with the doctor, one of my doctors said there are alternative medications, so perhaps.... . Actually, i forgot to take my Hydroxy twice over the Christmas period; some, complementary/alternative therapy people would say that was because the body was not wanting it which would seem to have been the case for you. BUT I am not a doctor so anything I say must be taken in that knowledge. I hope they can find the right balance for you.

best wishes,

- R

[Andrew8]

Since coming off statins, the muscle and joint pain has reduced considerably. I'm going to have a chat to my GP, to see if there is an alternative to Clopidogrel. Still getting some backpain, fatigue, headaches, and cough - all listed possible side effects. Maybe the dose could be reduced now my platelet level is down to 400k.

[Andrew8 in reply to Andrew8]

I came off Clopidogrel, at the suggestion of my haemo consultant, but my fatigue and muscle / joint pains did not improve. Now taking aspirin instead.

I had another fatigue meltdown, having to spend several days in bed, felt too ill to even sit in a chair. Consultant accepted that hydroxy does not suit me, so I am now taking Anagrelide, which so far, apart from a bit of a headache, seems to be a big improvement. Family and friends say I look better, and I have been able to resume my exercise, swimming, walking basketball, walking football, that's 3 hours a week plus outside work.

I realised that hydroxy is fungi based ( so I'm told ), and I know I'm fungi sensititive, allergic to penicillin, so that may explain the problem.