Help! anagrelide

[Spanelmad]

Hi mpners,A bit of help needed, a balanced opinion on anagrelide please.

I've an appointment tomorrow to decide on next treatment and there's lots of info on interferon but not for anagrelide.

I've got AT jak2 plus seronegative arthritis and spinal nerve damage,so I take another cytoxic drug which reduces my immune system.

So a drug that would only reduce platelets is interesting.

[mhos61]

Hi Spanelmad, this is from MPN Voice.

google.com/url?sa=t&rct=j&q...

Hopefully, any members on Anagrelide will offer advice too.

[Spanelmad in reply to mhos61]

Thankyou your booklet just arrived in the post as well

[Ratton in reply to mhos61]

Have ET and have been taking anagrelide for nearly 4 yrs.No problems with it.

Couldn't tolerate hydroxy,so was switched to anag.

[PhysAssist]

Hi Spanelmad,

Here is what I have found & saved for future reference, in case I ever needed it:

How I treat MPN's

MPN Quarterly Journal:

mpnjournal.org/how-i-treat-...

Special attention to the section by Dr. Hans Carl Hasselbalch

titled : How I treat ET, PV, and MF with interferon.

Anagrelide compared with hydroxyurea in WHO-classified essential thrombocythemia: the ANAHYDRET Study, a randomized controlled trial:

ashpublications.org/blood/a...

Significant association of cutaneous adverse events with hydroxyurea: results from a prospective non-interventional study in BCR-ABL1-negative myeloproliferative neoplasms (MPN) - on behalf of the German Study Group-MPN

[Anagrelide mentioned in comparisons]

nature.com/articles/s41375-...

Web page: nature.com/articles/s41375-...

Anagrelide in essential thrombocythemia: Efficacy and long-term consequences in young patient population

sciencedirect.com/science/a...

The Use of Anagrelide in Myeloproliferative Neoplasms, with Focus on Essential Thrombocythemia

ncbi.nlm.nih.gov/pmc/articl...

Combination Treatment of Essential Thrombocythemia with Hydroxyurea and Anagrelide

doi.org/10.1182/blood.V118....

Ropeginterferon vs Anagrelide as 2nd line Therapy:

youtube.com/watch?v=vEHc35K...(Not working as expected?)

...amd probably the mother of all these:

Treatment of essential thrombocythemia in Europe: a prospective long-term observational study of 3649 high-risk patients in the Evaluation of Anagrelide Efficacy and Long-term Safety study

haematologica.org/article/v...

I hope these help and aren't too overwhelming.

Best,

PA

[Spanelmad in reply to PhysAssist]

Now will be armed with questions on both treatments thanks to your research.

[Spanelmad]

you are amazing!!!Thank you so much

[PhysAssist in reply to Spanelmad]

Hi Spanelmad,

Usually the adjective used is 'annoying', so thanks for appreciating my overloading your 'inbox'.

I'm glad if it helps you even a little,

Best of luck, etc., whatever you decide!

PA

[heathermc]

I take anagralide 4 a day and 1 hydroxicarbamide. It changed my platelets and put them in the normal range. I was only taking hydroxicarbamide to begin with and it wasn't working as effectively as required . Been on.this for 3 yrs now.. I'm well monitored and doses do get adjusted as and when needed. It's not for everyone as can cause palpitations amd other dide effects . But it's been OK so far for me..

Wish you well and good luck .

[Spanelmad]

Nice to hear from someone taking it Thank You lots to discuss today

[Gaithersburg]

Hi there, I have been on Anagredlide for 13 years now ( 2 in the morning and 1 at night) and have not had any problems at all. I was reviewed with Prof Harrison and her team in January including a bmb and scan and she said everything is fine and no point in changing medication unless it is necessary. Good luck with your journey.

[Spanelmad]

Thank You so much for replying, since my diagnosis the forum has mainly been talking about Hu and Peg so it's really helpful to hear from you.Awaiting a second opinion from Guys at present

[CraftySpider]

Hi, I started Anagrelide after 20 years of Hydroxy, last July…it can cause heart issues, but have had no problems so far. Have had to increase dosage to 3 daily, but no side effects, so all good.

[Spanelmad]

Thank you for your thoughts

[ts75]

Anagrelide has worked like a charm for me on normalizing my counts (ET Jak) from very high platelets. Took one morning one night. Had side effects first 2-4 weeks (headache heart palpitations) but since then nothing. Am now trying pegasys because of more promise long-term (am 47). There are a few possible downsides to anagrelide so make sure to discuss w doctor! Good luck

[Spanelmad]

Thank you for your reply decided to go with pegasy ,after a lot of list making, family issues with our hearts trumped it!