Nausea

[Oscarsboy]

Good morning everyone on MPN family. Just a brief query. I started Hydroxy a week ago and am having some nausea symptoms on and off. Can anyone advise how long this usually lasts before it settles down and your system adjusts? I know everyone is different but a baseline would be helpful. Thanks everyone.

[paradiastole]

I took maybe a couple of weeks to settle down. The haematologist who was dealing with me at the time tried to prescribe me anti-nausea medication even before I had started on hydroxycarbamide, but he had a tendency to want to solve problems with pills even when there wasn’t a serious problem. Mild aquagenic pruritis which you say doesn’t bother you? How about some sertraline? (No thanks).

[Oscarsboy in reply to paradiastole]

Thank you for your reply paradiastole. That' very helpful. I am eating gingernuts!! at the moment but for obvious reasons do not want to eat toooooo many! The Consultant prescribed me Metocolpromide which I know I cannot take as had a bad reaction to it years ago, so he is leaving a prescription for someting else. I will hopefully wait for it to regulate, as like you do not want to be taking anything else at all unnecessarily. I also tried some tonic water last night as it has quinine and it did help for quite a while.

[Mostew in reply to Oscarsboy]

How about fresh ginger tea sweetened with a little honey . It’s a really nice drink . !!

[Oscarsboy in reply to Mostew]

I just wish I liked ginger. There are very few things I do not like but sadly I really do not like ginger. I was ill as a child that had something with very strong ginger in it and I have not been able to stomach it since. A gingernut is about my limit but maybe with the added honey it is definitely worth a try.

[Mostew in reply to Oscarsboy]

Mint then ?

[Oscarsboy in reply to Mostew]

Yes will definitely try that.

[Minu68]

I got the nausea too, it didn’t settle, and was advised to take the meds before bedtime, drink a good glass of water with it, and now I sleep through the nausea.

[Oscarsboy]

Thank you Minu 68. That is a tactic I had decided to try from today. At the moment though it just happens during the day any day and not just after taking the med. I will live in hope of it settling.

[Minu68 in reply to Oscarsboy]

It took about a month before it stopped being most of the time for me, gradually lessened and after a couple of months I didn’t notice it anymore at all. I think our bodies get used to it over time. A couple of weeks ago I’d forgotten it was a 2 pill night, and only took one. Took one in the morning, and was fine! Been on them over a year now

[Oscarsboy in reply to Minu68]

That's really great to know. Thank you very much.

[hunter5582]

Some adjust after a few weeks. Others find they cannot adjust and the adverse effects persist. We are each different in that way. In my case the GI problems did not start until after several months, but then never stopped. They just got worse. Many other people have a more positive experience with HU. I hope you will find that you are able to tolerate HU and benefit from it.

FYI - as an alternative to the gingernuts you might try a ginger tea. It really helps settle my stomach. Mint teas work well too.

[Oscarsboy in reply to hunter5582]

Thank you Hunter5582. Great advice as always. Have a very good weekend.

[Mwalimu]

I take my tablets 'within' a meal, usually the evening. At first, I tried it in the morning but, after 11 years, have found this works best for me. I try to manage the water intake my drinking a glass/couple after I have eaten and by having a high vegetable content in my diet. Hope that helps. Sallie

[Oscarsboy in reply to Mwalimu]

Thank you am now trying the same procedure.

[SuET2017]

Hiya, for me it didn’t stop and after 2 years of being stoic about the nausea I changed to Pegulated Interferon. However, as we know from the posts here, everyone has very different experiences.

[Wyebird]

Hi it didn’t happen to me sorry

[Mostew]

Oh . Just seen hunters response . He has already suggested ginger tea !!

[Pte82]

Ondansetron orally disintegrating tablets offer 8 hours of relief in just a few minutes after being placed under the tongue. Hydroxy causes magnesium loss so supplementing is important. Staying well hydrated helps flush toxins that may contribute to nausea

[Oscarsboy in reply to Pte82]

Thank you very much for that information. Am trying to drink plenty. Would you recommend adding magnesium daily as a general supplement?

[Pte82 in reply to Oscarsboy]

Yes I would. This link lists causes of magnesium loss many are unaware of existing. A major consequence of a deficiency for example is under activated thiamine leading to many health issues of the brain and body especially the connection to the gut by the vagus nerve. Activated thiamine in turn is required to activate other B vitamins so as you see magnesium is not only critical for our body but the air we breathe in photosynthesis. Always consult with your health care professional before using any supplement.

krispin.com/magnes.html

[Oscarsboy in reply to Pte82]

Thank you for that. I will read the link with interest.

[Lifam]

When I first had mine, it came on and off only for few days then it's gone. I am also on another group(mainly for ET), lots of members there also experienced the same thing but the nausea didn't last long at all.

[Oscarsboy in reply to Lifam]

Thank you that's very reassuring to know. Are you able to let me know of the group (mainly for ET) as that is what I have and would be interested in joining. If however that is not possible please do not worry. Thank you.

[Lifam in reply to Oscarsboy]

Of course. You can join the group on FB with this logo. I've also learnt a lots from this group. All the best.

Essential thrombocythemia supportive friends group

[Oscarsboy in reply to Lifam]

Thank you Lifam. I cannot however find a group with this logo. There is one in the US with over 4 thousand members but has the logo "ET go home" another UK group that has 754 members . Both saying they are Essential Thrombocythemia Support Group. I am sorry to be a pain but could you let me know which one you have recommended. Many thanks.

[Lifam in reply to Oscarsboy]

I'll find out more about it for you. I can invite anyone on my friend list as it's a private group(a very big global group) but I'll find out how to join.x

[Lifam in reply to Oscarsboy]

I was told by 5he admin that you have to search on line "Essen thrombocythemia supportive friends group", and request to join. Hope it helps.

[Oscarsboy in reply to Lifam]

Thank you Lifam, I will do that .

[Oscarsboy in reply to Oscarsboy]

Have now find the right group and applied. Thank you so much for your help.

[Lifam in reply to Oscarsboy]

Sounds great. I may be able to read your posts in that group then👍

[Meatloaf9]

I started HU 5 weeks ago. 2 per day, one in the morning and one at night, no nausea. It was such a pain to go thru the ritual of hand washing and handling the bottle that I decided to start taking them both in the morning, a little nausea but not bad and still better to get it over with all at one time. Will see what happens as time goes on. I take them both at the same time and on a empty stomach because I theorize that they get absorbed quicker and don't sit in the stomach as long or get refluxed back up into the esophagus as I have GERD. That's just my theory, I don't know if it is valid or not, everyone is different. I am sure you will work out what works best for you. Good luck to you on this journey.

[Oscarsboy in reply to Meatloaf9]

Im so glad you have found a plan that works well for you. I have now switched to taking at night and will see how it works out. I have to say it has been easier today. Mine are in blister packs, you just pop each one out as you need it, not in a bottle so that may be easier, although it does advise wear gloves or wash your hands. I too suffer with reflux periodically and I must say it has started that off again so am using lanzoprazole temporarily until it hopefully adjusts itself. I wish you all success as you too move forward on this journey.

[finlay2106]

I have PV and when first started on Hydroxycarbamide last year I noticed a queasy feeling an hour or two after taking it but that then wore off after a little while. I experienced this for perhaps a week or so and then it vanished. My initial dose was 500mg daily and as I was never given any advice as to when to take it (and none on the info leaflet I think) I have it first thing with my breakfast. I've since been increased to 1gm/500mg alternate days but no recurrence of the queasiness since the initial period. As others have said everyone seems to be different. Hope this helps.

[Oscarsboy in reply to finlay2106]

Thank you. Am glad to know you are managing well on your new dose. The queasiness has started to abate a bit now thankfully.