Which drug

[Alired]

Hi All,

I am one of the fortunate ones and not taking any medication yet, however the platelets are slowly creeping up and it is just a matter of time before I start. I recently moved within the UK and changed hemotologists my first hemo recomended Interferon, the 2nd recomends HU. Which ones is right and are there any medical guidelines out there which assists the decision process?

Thanks...

[linds]

Hello Alired, you should listen to the lecture by Dr Trefiri as mentioned in the posts section. It is very easy to follow and seems to make sense of things. Hydroxurea seems to be the preferred medication and I am just about to face this too having had my condition controlled solely by venesection for 18 mnths. Good Luck.

Linds

[piggie50]

Hi Alfred, my PRV has been controlled by venesection and clopidogrel for the last seven years. My bloods have been gradually creeping up over this time and my haematologist has said I will need to start taking hydroxy within the next six months. He has said that hydroxy is the preferred drug unless you cannot tolerate it. I am also due to have a bone marrow biopsy on 9th sept, which I am not looking forward to. As Linds says, listen to the lecture on the posts section, you can fast forward the first 20 minutes. Good luck.

Judy

[treebeard]

Hi Alired I have had ET for 6 years or that was when it was diagnosed, you did not say at what level your platelets were at, mine fluctuate between 600 to 850 I don't take any medication apart from 75mg of Aspirin per day, the heamotologist is always trying to put me on one of the drugs used but I prefer to avoid them because of the side effects that they invariably cause!

[Alired]

Hi Treebeard,

You like Lord of the Rings heh!

Mine are sitting in the same range as yours, but my hemo doesnt recomend any drugs until the platelets are approaching the danger level of 1,500 so you are doing well to refuse. Would be interesting to know why she wants you on them though, perhaps you have other risk factors.

To all,

Thanks for the advice about Dr Trefiri, most informative.

Be good,

Al

[Sherry2]

Hi

can someone please tell me where i can find Dr Trefiri's lecture?

Thank you

S

[piggie50 in reply to Sherry2]

Hi Sherry,

youtube.com/watch?feature=p...

You can fast forward the first 20 minutes to get to the English speaking part.

Judy

[Sherry2 in reply to piggie50]

Thank you piggie50

[Alired]

I am unconvinced with his lecture. He criticizes the very pharmaceuticals which have developed the drugs we use because they profiteer and then goes on to say people with ET no matter how high their platelets become should only take two aspirin per day. This is contrary to all of the advice we receive from ALL of out hematologists.

[Sherry2]

Hi Alired

I am in exactly the same situation as you, Diagnosed with ET 3 years ago currently on Clopidgrel 75mg. Platelets are creeping up. Heam has suggested inteferon.

I suffer from migraines approx once a month, so will ask to see if doubling up on Clopidgrel is ok.

If I do decide to start on any of the heavy drugs, I will probably pick inteferon - this is just my opinion for me, but I hope the info I have gathered below helps.

Information I have done so far is:

1. Interferon alpha

Pros - not mutagenic - not associated with risk of leukaemia, predom works on reducing production of platelets which are currently overproduced by the signal sent to your marrow.

Cons - injection under skin, like insulin,side effect profile means upto 20% patients do not tolerate it, associated with worsening depression if there is a history.

Symptoms usually worst in first 4-6 weeks, and most folk get flu-like symptoms which they can manage - take injection at night before bed and with paracetamol. Fatigue can be there for day after injection and usually 3xweek min dosage.

2.Anagrelide - tablets, affect all cell lines but mainly target platelet production - so again reduce numbers - can cause anaemia, palpitations, mild GI problems. Reduces venous clots but can increase risk of bleeding is used with anti-platelet agents and may not impact on arterial clots.

3. Hydroxycarbamide - gold standard with evidence to show reduces clot risk. Tablets. Affects DNA and so production of cells at DNA level of division - hence mutagenic risk if used for long time ie more than 8-10yrs. Can cause skin changes in darker skins.

All need to have doses adjusted to individual pt's counts and so doses will vary and regular monitoring.