Hydroxycarbamide change of dose

Going through treatment
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Hi everyone, just wondering if anybody has had stomach problems following a change of Hydroxycarbamide doseage?
I have had Essential thrombocythemia (ET) for a long time and recently my platelet count has reduced which is great news. However my consultant has lowered my hydroxy from 19 capsules per week to 18 then 17 and now 16. I am having a lot of tummy issues, indigestion, diarrhoea, gas etc and I wonder if this could be connected ,which kind of makes sense , it is a strong drug after all. On the other hand it may have no connection to these changes.
Has anyone else had these problems when their doseage is tweaked? Thanks for any feedback in advance and take care all :blush:

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Hi @moonchild

Sorry to hear you’re feeling those symptoms.

Everything you’ve mentioned are common side effects to taking hydroxycarbamide.

It’s key to remember that everyone is different so there isn’t a symptom that everyone experiences but it’s important to note them and report them to your med team.

The important and priority of taking hydroxycarbamide is to lower your platelets and if anything “minor” or less significant happens on the way it’s something you have to deal with separately and/or take on the chin… was the kind of attitude that was bestowed on me. Often when your prescribed hydroxycarbamide they do give you a supply of gastro acid reflux, paracetamols, anti sickness tablets to limit the symptomatic feeling commonly felt, so if you haven’t, it’s def worth consulting with your med team.

It’s also important to note that symptoms and side effects can hit at different times, they aren’t all at the start of treatment, they can develop weeks/months/years into treatment.

To summarise, what you’ve written I was told were pretty common and just unfortunate that you’re feeling them when your treatment has started to fulfil its purpose.

Defo speak to your med team and or gp, who will be best positioned to support and advise you in supporting you through it.

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Great to hear from you again @moonchild .
Sorry to hear about your symptoms.
@Rammie18 has given you a great response.
I always believe in telling my treatment team about my symptoms, their severity and impact on my life.
It might affect their ‘tweaking’.
Look after yourself and please keep posting how you are doing.

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Thank you for your response and the great info it contained.
I was hoping for some answers from people on Hydroxycarbamide who have had stomach issuessoon after changes to their doseage . Maybe some will appear :crossed_fingers:Thanks to all of you guys on the support team, you do an amazing job, And big thanks to yourself and Erica for taking the time to respond so quickly. :smiling_face_with_three_hearts:

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Hello Moonchild
I am a brand new member of Essential thrombocythemia (ET) and was terrified of the list of side effects but so far only itching from copidogrel which has cleared up very quickly. I can’t help you with any advice but I was so pleased to see that your count is going down and they are reducing your medication ! That’s got be excellent news for you and hope to us newcomers.

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Hi @Lesley70 and @moonchild how are you both doing today?
Be kind to yourselves

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I feel very normal but have my first blood test next week after two full weeks in the medication so will be wobbling then I dare say . Thank you for asking

| Erica Forum Support Volunteer
November 8 |

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Hi @Lesley70 and @moonchild how are you both doing today?
Be kind to yourselves

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So it’s 1.51am and I am in pain. Firstly I had a shingles vaccination last Thursday and then had my hydroxycarbamide tablet Friday, Saturday, Monday and today by mistake as I should be taking Monday Wednesday and Friday.
But I have had excruciating sciatic pain for two days at bottom of my spine and down the tops of my legs . Slapped on voltarol but not making a difference. Is that a side effect?? I can’t think of any other reason as to why I should have this pain. Shame because I had a consultation with my doctor today and was saying how I wasn’t reacting to
Pills now, itching had stopped etc never thinking to mention the sciatica but lying here now I am asking the question and if so, should I ring my specialist nurse and tell her tomorrow? I have to have a follow up shingle vaccination in January so hoping this goes away and if I do get it then, it will at least tell me to bear with it as it will pass. I think I should put the hydroxycarbamide pills in a pill box so I can’t forget the right days. I dare not google it, nor did I read about any of the possible side effects otherwise I would not be functioning properly at all as in my mind I would have all
Of them and then get a massive panic attack.
So just need to know about this sciatic pain please
Thank you. Lesley

I feel very normal but have my first blood test next week after two full weeks in the medication so will be wobbling then I dare say . Thank you for asking

| Erica Forum Support Volunteer
November 8 |

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Hi @Lesley70 and @moonchild how are you both doing today?
Be kind to yourselves

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Hello @Lesley70. I am so sorry to hear all you are going through. I took Hydroxycarbamide for over twenty years and never experienced the sciatic pain you describe. The drug is usually well tolerated but I am only writing from a fellow patient’s point of view. I would certainly encourage you to seek advice from a nurse or doctor because you shouldn’t have to suffer like that. Yes, a pill box is an excellent idea to help you keep track of when to take your medication. I really don’t think taking the Hydroxycarbamide on the ‘wrong’ day would cause the problems you are currently experiencing. I hope this reassures you and I wish you well, Willow x

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Thank you for that. It’s reassuring. No idea why sciatica would reappear. I had it years ago for 3 months and no medication got rid of it! A bizarre treatment called Bowen Technique cured it in 3 weekly sessions in the end!!
I note you said took for 20 years, does that mean you finally came off it?
Lesley

| Willow
November 15 |

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Hello @Lesley70. I am so sorry to hear all you are going through. I took Hydroxycarbamide for over twenty years and never experienced the sciatic pain you describe. The drug is usually well tolerated but I am only writing from a fellow patient’s point of view. I would certainly encourage you to seek advice from a nurse or doctor because you shouldn’t have to suffer like that. Yes, a pill box is an excellent idea to help you keep track of when to take your medication. I really don’t think taking the Hydroxycarbamide on the ‘wrong’ day would cause the problems you are currently experiencing. I hope this reassures you and I wish you well, Willow x

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Oh @Lesley70 how painful and I wonder how you are feeling now.
Yes, as you say ring your specialist nurse and tell her your symptoms, and don’t hold back on the severity.
Good idea to avoid Dr Google.
I have got a pill box and find it really good. However shop around as they come in all shapes and sizes.
Please do let us know how you get on with your specialist nurse, I think they need to be aware of everything that is going on for us. We are complex beings…
Look after yourself and please do keep posting

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Yes @Lesley70. It’s a complicated story but when I was diagnosed in 1992 I was told I had a Myeloproliferative neoplasms (MPN) with features of Myelofibrosis and Essential thrombocythemia (ET). My platelets were very high for many years and that’s why I took Hydroxycarbamide. Then about five years ago the disease transformed to myelofibrosis with no features of Essential thrombocythemia (ET) or high platelet count. Therefore the Hydroxycarbamide was no longer needed. I take different medication now specifically for myelofibrosis. I wish you well. Let us know how you get on. Warm wishes Willow x

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