Day one..

[heathermc]

So I begin my HU journey today. Have to take 500mg and an alipurinol tablet for a week only. See my consultant in 2 weeks. Platelets are 1645.. The hu is a small dose I know feeling nervous but here goes.

[hall2]

Good luck!

[ggrana]

Good luck to you! I also started HU when my platelets reached 1.7 million. I hope one a day helps you , it didn’t for me but for many it does .

[Tico]

Must have been very daunting, with a bit of luck those pesky platelets will soon be tumbling! Haemo will keep a close eye on you in the beginning and adjust the hu accordingly. Sending you my very best wishes.tina.x.🤗

[WileyFrench]

Hi Heather - I sure know how you feel re being nervous. I started hydroxy last July (2018) and was so nervous and worried and everything else. This forum was so helpful and there are people here who’ve been on it for decades and lead normal lives. I’m now one of them. No side effects other than platelets going down like they’re supposed to. I had to get the dosage to one pill one day, two the next for the decrease to happen and I’ve heard others say that their dosages vary. It’s really supportive here, with real-life (not Google) information and I’ll bet things will nicely move forward for you too.

[heathermc]

Thanks .. early days I know but feel ok.. I know I need more than one dose to give comment. I have been to work and drank lots.. don't know what I was expecting. Upwards and onwards. Still smiling .

[Ebot]

Wish I hadn’t wasted so much energy angsting over those capsules! Turned out to be little miracle workers with no side effects. The reality is that for the overwhelming majority of people they work really well. All the best. Here’s hoping your numbers start tumbling!

[Greta1144]

The best of luck to you. This is a very helpful and support group. So many great people ready to discuss, explain and listen.

[heathermc]

It's helped me so much.. stops alot of worrying. I think we all get anxious but I'm not scared anymore. Concerned as we all are but feel I can get some control back. Just need the platelets to come down.

[Wyebird]

Good luck. Don’t worry if your dose doesn’t lower your platelets. It didn’t for me and mine were only 802! 1000mg daily did tough and after a week felt better.

[Cja1956]

Good luck on your journey. I was nervous at first, too, but it’s been 11 years and I’m still on it. It’s great that you are seeing your doctor again in two weeks. He will adjust the dosage, as necessary.

Regards,

Cindy

[MacDWild]

I was nervous too when I started 5 weeks ago. It made me feel like crap at first. Now I take it at 8pm and I feel pretty normal. Good luck to you!

[Rachelthepotter]

Hi Heather

Hope the HU suits you, and does its job. It didn't agree with me, so I was switched to ruxolitinib (I have MF, so that was an option), but as you've seen loats of people here barely know they are on it. Just a comment about the allopurinol: are you only taking it for a week? I take it permanently, as it stops the buildup of uric acid from the dead blood cells that causes gouty pains . I re-read your post and its not clear -apologies if you mean are going to be on it all the time. Worth checking with your haem when you see them. Do keep posting.

All the best.

[JediReject in reply to Rachelthepotter]

Yes Rachel I agree re Allopurinol and was going to say the same. My diagnosis was triggered by gout initially so along with HU I was on 300mg Allopurinal daily tablet for 9 years until juSt before my SCT.. I was put back on it as I had a gout attack 5 weeks after my SCT.

As you say it's for long term prevention.

Hope you're well as can be- Chris