Just starting on the med...

[Sheryljean]

Hi all..just finished my first week on the hydrea pill. (Sp) go tomorrow to find out if it is controlling the bone marrow so it quits making so much blood. I did not want to have started this pill until I was positive of the diagnosis of polycythemia Vera, which has now been confirmed. Quick question..those of you who are taking this drug, do you ever get off from taking the anti nausea pill? Thank you all!

[piggie50]

Hi Sheryljean,

I don’t know of anyone that has taken the anti nausea pill with Hydroxy? I started on one 500mg per day, dose goes up and down depending on blood counts and I have never needed an anti nausea pill. I’m very interested, Did you need it from the beginning or did you take it as a precaution? My counts came down very quickly once I started a Hydroxy. I’ve been on it now for 4 years with no problems.

Good luck for your appointment.

Judy.

[Sheryljean in reply to piggie50]

Hi Judy,

Yes my dr gave this to me from the get go I take it an hour before I take the Hydrea. Zofron. I tried not taking any the 3rd day...but the nausea was strong. She also suggested to take Ginger capsules and maybe Dramamine, small dose. My count came down a little today. I call them the Hermicritters...from 48 to 47 and blood pressure still likes to act on it own and go up and down.

Good Luck with your journey. I am going to try and copy you and have not problems with this med!

Sheryl

[mhos61]

Hi Sheryljean,

Wishing you well for tomorrow. Hydrea works well for me (ET), I’ve been on it for two years. Counts came down quickly and remain stable.

Not sure about the anti nausea drug that you have mentioned. I suppose once your body becomes used to hydrea the idea would be to drop this drug?

Mary x

[stillkicking]

Hi Sheryljean,

I wasn't given anti nausea when I started Hydrea. I had some nausea for the first 24 hours, but none since then, although it took about 10 days for my digestion to really settle. I started on 500mg hydrea every day, and this has been increased now to 1000mg one day and 500mg the next. I wonder if you were starting on a higher dose than 500mg and were given the anti nausea as a precaution?

I have ET (rather than PV) and was told that Hydrea can take a few weeks to really make a big difference to the blood results, and not to panic if I didn't notice much happening at first.

Best Wishes, Peter

[Sheryljean in reply to stillkicking]

Hi

No I am starting on the 500 mg and my dr gave it for she has had patients that can make the transition easier. She also said to try the Ginger capsules which I can get at GNC. I get nauseous through the day. In one week, the hydrea did drop my numbers, not a lot but looks like it will be working.

Thank you for being making it better, knowing this has worked for others!

Sheryl

[MaryGoretti]

Hi Sheryljean

I started on Hydroxy about 9 yrs ago and wasn't given an antiemetic and had severe nausea for that week, after the first week when I returned to see the Haem I was given some which I was taking x 3 times daily for a while gradually reduced. I now take the occasional one especially if I am in a warm climate seems to effect me more in heat.

Hope this helps

Good luck

Mary

[Wyebird]

Hi, I do hope you stop feeling nauseated. I haven’t suffered for it and I e been on hydroxi for 2 and1/2 years.

Mind you un My case weight loss would be a silver linning🙄.

I have ET, don’t be disappointed if after 1 week no change. The dose might need adjusting.

I’m on the way to clinic now.

[beetle]

Hi. I wasn’t given anti nausea meds when I first started HU. I suffered nausea initially and used travel sickness band on my wrists which helped until I no longer needed them

Best wishes, Jan

[Ebot]

Hi. I’d never heard of anyone being given anti nausea pills straight off until you posted! Hydroxy is generally very well tolerated and nausea tends to be a pretty rare side effect. And I think if people are affected the effects are relatively short term. Certainly there was no expectation on the part of my haem team (Guy’s Hospital, London) that it might be an issue. And indeed I felt perfectly fine. A little lightheaded the next day when I first started and again when I upped the dose. I haven’t gone looking for or expecting any side effects and it’s all been OK. Counts tumbled initially and have now plateaued so the dose has been marginally increased. Good luck!

[JackLina in reply to Ebot]

Nausea is probably the only symptom of taking Hydroxy that I haven't suffered. My pain and inability to use my hands, useless and very painful thumbs (which developed clicking joints) and fingers that did not work goes well with the tingling and numbness in my hands on a daily basis and complements well the severe pain in my joint, particularly my knees. The fact that I have quickly become an invalid who has to take time to try and straighten and can no longer walk my dog properly and who had to be wheelchaired through the airport and on and off the plane to France has ensured that I have stopped taking hydroxy since Tuesday, the day I travelled.

Monday evening I was so bloated with swollen ankles and feet that I could not believe my general appearance. I have gone from an active and determined (to stay as fit and healthy as possible) individual to an invalid sufferer of every bad symptom bar the nausea. Despite this my doctor said I must continue as he sees no reason why I shouldn't. My nurse tells me my severe joint and bone pain will. not be caused by the drug but my fibromyalgia. Strange then why those symptoms are slowly subsiding since I quit taking it.

Anyone else had these reactions to it? I felt so guilty coming off it but it was either that or phoning an ambulance and being admitted to hospital. I felt so ill with my blood pressure sky high and my head and everywhere else hurting so much, I felt I had no choice but to stop taking it. Over to you all on MPN Voice. Please.

[Bonnie560]

Hi I was put on hydroxy 3 weeks ago also he gave me gout tablets to take for the first month and anti sick tablets. I thought they were for the gout tablets. Luckily I havnt have to take them. Did he give you gout tablets. Good luck with your meds xxx