First day on Hydro.

[Kelly2]

I started the drug 3 hours now after months of procrastination. I was scared, I said prayers and had a loved one with me "just in case". I felt nothing up to now. Had some water before, and one glass every hour. I am eager now to see my blood results in a fortnight.

[WileyFrench]

I was exactly like you - hesitant and very very nervous, so I completely empathize. Now, after taking the meds since July nothing bad has happened and it’s just kind of a thing I do every day. My platelets aren’t exactly dropping like a stone but they are lower than when I started. I imagine that will be your case too.

[Kelly2 in reply to WileyFrench]

Thank you! Hopefully it will do the job and I won't need to increase the dose. I am also hoping that the itching will disappear as lately I am itching also when dry!

[WileyFrench in reply to Kelly2]

Yes indeed. What’s your dosage now? I started at one tab three times a week but had to go to one a day.

[Kelly2 in reply to WileyFrench]

500 mg once a day

[Ebot]

The reality is that the overwhelming majority of patients take hydroxy with zero side effects - other than to see their counts and symptom burden reduce. Six months on I feel the best I have in five years. A fog has been lifted and I’ve started to ‘wake up’. Counting my blessings. Long may it last!!

P.S. I don’t know when you take your Hydroxy but if it’s at night you might want to cut out all that water. To start with I downed two or three glasses of water. Big mistake. I was up all night peeing! I just take a full glass to get all my tablets down.

[Kelly2 in reply to Ebot]

Hi I hope so for me too! I hope it will work and maybe who knows I might even reduce it?! Yesterday I took the capsule in the morning after breakfast. From today I will take it at noon after lunch. That way I can drink water without problems. Half an hour before lunch I take a pill to protect my stomach. I will take the aspirin in the afternoon. Last night I had a long and deep sleep and I even saw a dream which I don't usually, maybe because I was relaxed regarding this issue! I hope that the itching will go away too because I have it when dry now, not so often, ( yesterday I had to take an antihistamine, I couldn't bear it) and not so much after shower.

[Ebot in reply to Kelly2]

Yes weirdly that first capsule knocked me out too. I was hopeful it was to be an ongoing upside. But alas, in my case, not! Do hope you feel the benefits very soon.

[Wyebird]

Don’t worry if your dose increases. You’ve been put on a very low dose. I started on 1 a day and it had to go up to two before I got results. You might have to ease up on the water. Like you I drank lots. Two litres a night. Lol. I craved for it. My consultant told me to ease up on it. When my platelets dropped I felt loads better. I do hope the same happens for you.

[Kelly2 in reply to Wyebird]

Yes I actually asked my doctor and he said to drink normally! It's because I read here that people drink loads of water Thank you

[lizzziep]

Hi, I was the same, I fully expected to glow in the dark or at least grow another head after taking it for a day - years later nothing had happened! I did eventually get ulcers on my feet, as a side effect, but I was changed to Anagrelide and they cleared. My platelets have been in normal levels for a while (touch wood!) Your blood may take a while on the drug before it reacts so don't be disappointed if at your first test the platelets haven't lowered, they will eventually. I spoke to a lady at the clinic a couple of months ago, she was 82 and had been on hydroxy for over 20 years without any problems!

Best wishes

Lizzie

[Kelly2 in reply to lizzziep]

That's comforting to know Lizzie. Thanks. What is Anagrelide for? Should Hydro not have an effect on me I cannot take Interferon as I have hypothyroidism. I found that out on my own and the Prof. agreed!

[lizzziep in reply to Kelly2]

Anagrelide is for lowering platelets (I have ET), same as Hydroxy, but everyone is prescribed Hydroxy first as it is cheaper! The doctor told me that Anagrelide is more platelet orientated than Hydroxy, but a bit more expensive!

[Kelly2 in reply to lizzziep]

I have PV and I hope Hydroxy will also lower my high haematocrit.

[Angeltwin in reply to lizzziep]

Hi Lizzie this is so comforting to know as I have been really worried when they doubled my hydroxycarbamide I have ET found out last January Iam 52 and just joined this app and I am finding it very interesting and helpful .

[lizzziep in reply to Angeltwin]

It is SO scary at first, I made the mistake of asking Dr Google about ET - big mistake - scared me to death! However nearly 9 years down the line none of what I read has come true! I have much more trouble from my arthritis than my ET.

[Kelly2 in reply to lizzziep]

👍

[Mica11]

I started on one 500mg daily(very reluctantly) but after a month there was no reduction, been on 2 a day since and no adverse effects from it. We are all very different but just wanted to say don't worry if there is little or no change in your counts at your first checkup and you are told it has to be increased, I was in tears thinking it wasn't working. It gets to be part of your daily routine very quickly. You will soon not think twice about taking it. X

[Kelly2 in reply to Mica11]

Indeed just took the second one just now. I am thinking of having my first check up at the end of one month as the Prof. said and not after a fortnight that another doctor has told me. If the results are not immediate there is no point. Thank you