Hi, went last week for my first appointment after my Essential thrombocytopemia diagnosis.
I’ve been on the starting dose of Hydroxi for 4 weeks and my platelets have gone up??!!
Is this normal?
They have increased my Hydroxi and I go back to the clinic in 4 weeks but I’m worried as to why even the mildest Hydroxi has not touched my platelets.
Has this happened to anyone else.
My platelets were 800 at the first referral, dropped before treatment to 712 and after some treatment are now 777.
Amy advice will be welcome.
Thank you x
1 Like
Hi @May14 it sounds like an anxious time to me, I think the unknown always is.
I don’t know if anyone can share their experiences.
I will also copy your post to the Blood Cancer UK nurse advisors in case they can add something. @BloodCancerUK_Nurses
Perhaps this is also a good question for your next medical appointment because everyone is very unique and treatment is tailored to each patient.
Please let us know how you get on.
Really look after yourself.
1 Like
Hi @May14,
Thank you for opening up this chat. I’m hopeful that others within the forum will also be able to offer you some reassurance and share their own experiences.
It is reassuring that you have your bloods have been monitored and that your team has increased the dosage.
We know that managing drug levels is not an exact science and often titration of drugs, particularly when newly introduced, is an important part to find the best level for you in reducing your platelets. However i do appreciate how unsettling this can be when you don’t see the results you had hoped for.
Please do keep in touch and know that if you want to talk anything through, our helpline is open 7 days- Blood cancer information and support by phone and email | Blood Cancer UK.
Take Care, Lauran
2 Likes
The early days of starting treatment I’ve been told is a bit of a rollercoaster and can take a while before it becomes a bump free ride.
I’d say it’s quite common in the early days to see you platelets go in the opposite direction. This is often because hydroxy or any treatment for your platelets is often started on a low dose and never the eventual dose as your body needs to get used to it but also to see if your body can cope and not give you severe side effects so specialist will always start with an air of caution. Sometimes new medication can make the naughty things in your body go into hyperdrive to fight the treatment because of the low dose before it’s increased and overpowered.
The important thing is to keep your medical team informed and ensure you have support for the rocky ride of starting treatment and all the ups and downs.
There are many people on here who’ve been on hydroxy for decades and been absolutely fine. It’s best to see this treatment not so much as a quick fix but more planting a seed.
You’re being completely normal about being anxious and cautious being newly diagnosed. It can be like starting a new school with no friends joining you but the forum is a brilliant go to place that will fill you with warmth and company through it all
1 Like
Hello May14 - I have ET too and had 13 years on Hydroxy - and yes what you mention happening to you is normal, it takes a while for platelets to drop (although there are some that it happens quickly) and find a dose that works for you - both ET and it’s treatment with Hydroxy is very individual to each patient - some will get their platelets controlled with 3 capsules a week, the next it will take 3 or 4 a day! - with no indication the higher doses mean a worse disease, almost no rhyme or reason as to how individual it is for each of us. So quite normal that you got started on a smaller dose, now no doubt the dose will be tweaked up a little to see how that works and it will be some adjustments over coming months until levels fall quite a bit - even then it is very usual for dosages to be tweaked up and down over the course of treatment so never be worried if that’s done - it’s also normal for platelets to go up and down, it does in all people with effects of infection or inflammation, so again don’t worry too much as that will happen - it’s an overall picture that your consultant will look at as your treatment goes on and it’s quite usual to keep being checked every few months to keep an eye on you. I found Hydroxy worked well for my platelets for many year, I was one of those that needed 3 and 4 a day to do so with the specific amount being tweaked up and down all over the 13 years. I have been on Peg interferon for a few years now that works well for me now. All the best and keep us posted how you get on
1 Like
Hi, thank you all for your replies and support. Jilly can I ask you how long was it before your symptoms eased?
I have bouts of light-headedness and blurred vision still.
Thanks
1 Like
The blurred vision should ease up once your platelets go down a little - the aim of treatment is to get the platelet counts more within normal range, or just above it and that eases things like light headedness and the blurred vision - although it is worth knowing some things are symptoms of the condition and can come and go even when your counts are well controlled - again very individual to each patient - if you haven’t already do look at the charity, MPN Voice, you may find some helpful information there. I do hope you have an informative consultant too and perhaps a clinical nurse specialist attached to help answer your concerns. Give it all some time - the treatment will assist and you will get to know how the condition effects you and how to manage it all well - take care
1 Like
Hi, thank you so much for this Jilly20.
It’s early days for me and so I’m just getting used to it all.
You have really reassured me.
Thank you.
Take care x
1 Like