Medication for ET - HELP

[Emma_shall]

Hi everyone. Looking to find someone in a similar boat here.

I have Essential Thrombocythemia as well as APS. I'm recently on warfarin for APS but they now want to medicate me for my ET. In my doctors words, 'I'm an accident waiting to happen'.

Anyway they want to start me on a low dose chemotherapy, specifically Hydroxycarbomide. This will be for life & I am only 25.

There are several concerns, one being wether to do interferon instead but my research looks like it can not be a great time. Also any future pregnancy looks problematic.

Anyway if there's anyone on hydroxycarbomide, specifically 25-35 years old, I'd love to find you and have a chat to know what's in store etc.

Thanks so much in advance

Emma. X

[AndyT]

Hi Emma

Welcome - this is a great community. We are all different and medication depends on lots of factors but I'd definitely suggest considering Pegasys (slow-release interferon) especially if you're planning children.

The great thing about Pegasys is that you inject less often (every 4 weeks for me) and side effects are much less than with earlier forms of interferon.

Many people do well on long term HU too but my haem and some others definitely prefer Peg in younger patients.

Good luck

Andy

[Hobnobbing]

Hi.

I'm really sorry you are experiencing this at such a young age. You are right to seek really sound advice with all of these factors. I have ET. I don't have APS but I do have Lupus and other AI diseases. I would be careful about starting Pegasys. From what I can understand - you would need to confirm this with a medical person - Pegasys can worsen AI diseases. I found this article on tinternet about Pegasys. It might help you.

fda.gov/downloads/drugs/dru...

I really hope you get the answers you need. It is really tough adjusting to these changes in your health. This is a helpful and supportive community. I do spend more time lurking than posting but wanted to reply to you when you mentioned APS.

[Emma_shall in reply to Hobnobbing]

Thank you, I'll have a read. It seems to 6 of one & half a dozen of the other with the treatment choices!! I'm on warfarin for the APS & I know some interferon, maybe pegalated, can clash with that x

[jillydabrat]

So sorry you have found yourself in this situation at such a young age. Please speak to your haemotologist before taking hydroxy if you are planning children. This is vitally important. Good luck with your treatment and God bless.

[LKVVZ]

Hi Emma and welcome,

Can I ask how high your platelets are? Most of the time the Dr wont start you on any treatment besides Asprin if your counts are below a Mil and you haven't had any clots in the past.

The reason why they place you on a chemo drug is not to kill chemo cells because ET has none, its just to lower your platelets if they are extremely high and you are at risk for bleeding, which is why I ask how high your counts are. Also did you do a bone marrow biopsy?

Lina

[Emma_shall in reply to LKVVZ]

Thanks lina. My platelets are steady around the high 700's. No, I can't do a bone marrow biopsy as I'm on warfarin but I'm JAK2+

I had a thrombosis event on aspirin hence the need for warfarin now.

[LKVVZ in reply to Emma_shall]

Is this why they want to start treatment? Because you've had a clot?

[Emma_shall in reply to LKVVZ]

Well the event happened in July & they've been hoping they'd come down naturally but they haven't so yes, I guess so.

[zvinkovic]

Hi Emma,

I was diagnosed with ET in 1999 at the age of 19 following a blood clot in my left leg, and I was immediately put on Hydroxyurea as they needed to lower my platelets as quickly as possible. Didn't have any side effects, but later my GP suggested to switch to interferon because of my young age, that it would be better long term and if I decided to become pregnant. So I switched to interferon, also no major side effects and I would suggest you to try it but unfortunately I don't know much about APS and how it would agree with interferon. I would suggest talking to an APS specialist and checking with him if interferon is contraindicated if you have APS.

If there wasn't for APS and you needed some sort of medication for ET I would definitely recommend interferon, as from reading a lot of pages of research, for now it is the best treatment for ET, especially for young patients, it can in some cases revert fibrosis and you can become pregnant while on it.

If you have more questions feel free to ask, I hope this helped a bit.

Best wishes from Croatia,

Zlata

[Emma_shall in reply to zvinkovic]

Thanks zlata.

I'm worried after reading ALL the side effects from interferon but I guess some people are lucky & have none!!

[zvinkovic in reply to Emma_shall]

I believe the side effects depend on dosage, in the beginning I was on 3 million units 3 times a week, now I am on 6 million also 3 times a week. That is both low dose so probably the reason why no major side effects. When you start interferon it is normal to have flu-like symptoms without actually having the flu, but that can easily be managed with paracetamol. Also, it is better to inject in the evening so you sleep through side effects. With me the chills would begin about 4 hours after injecting, and it takes about an hour for paracetamol to kick in, so I would inject around 8 in the evening, after 2 hours would take paracetamol and then get ready for bed. After a week or two your body adjusts and flu-like symptoms happen rarely or never.

Also, as Andy mentioned in the first reply, there is a possibility of pegylated interferon which has less side effects and you only inject once a week or once in two weeks, but here in Croatia it is not in use for ET because it is more expensive.

[AndyT in reply to Emma_shall]

If you are in the U.K. Pegasys should be available and is much gentler in terms of side effects - availability in other countries seems to vary. Either way, interferon is definitely worth investigating at your age as there is increasing evidence that it's a better option for younger ET patients.

[bms0hes]

Hello, I was diagnosed aged 16, started on interferon daily injections, then hydroxy carbamide then swapped to Pegasus whilst I had my kids who are now 7 and 3. I was on quite a high dose and didn't get any side effects. I found Pegasus much better than daily interferon as only needed one injection per week. I had regular blood tests, checkups and scans throughout pregnancy and like you was really concerned about the impact of ET on starting a family but it is possible. I'm back on hydroxy carbamide now. Hope all is well for you.

[Emma_shall in reply to bms0hes]

Thank you, that's very reassuring.