just started taking hu and after 5 days was in the ER with intractable vomiting and severe stomach pain. Are there specific foods or drinks to avoid when taking this drug? Are the any ‘companion’ treatments to avoid the gastrointestinal problems I’ve experienced?
I was not given any specific instructions from my doctor other than ‘ take this medicine 3x weekly for 3 months.’
hi ETXgran, I am sorry that you have been so unwell. There is nothing in the information leaflet about avoiding any foods or drinks, but they do contain lactose and the advice is that if you are intolerant you need to speak to your doctor. There are also interactions with other medications, if you are taking any other medications for any condition, but this should have been checked by the doctor or pharmacist before they prescribed them. One of the less common side effects when taking Hydroxycarbamide is nausea and vomiting, so this could have caused your problem.
You should have had an information leaflet in the box when you were given the Hydroxycarbamide, which will list all contra-indications and side effects, you can also read them in our booklet mpnvoice.org.uk/about-mpns/...
You need to contact your doctor and discuss this with him/her.
I hope you feel much better soon, best wishes, Maz
Thank you so much for your reply! I actually am lactose intolerant and had not read all of the packaging information. I will speak with my doctor soon.
This is definitely something to review with your care team. While this could be something else, it may be that you are hydroxycarbamide intolerant. Nausea and vomiting are known adverse effects. As Mazcd noted, there is lactose in hydroxy, which can also be an issue. Here are a couple more resources about hydroxycarbamide (AKA hydroxyurea).
online.epocrates.com/drugs/...
drugs.com/monograph/hydroxy...
Please do be sure to consult with your hematologist ASAP. The good news is that if you are hydroxy-intolerant , there are other options.
Thanks so much for this information! I have reached out to my hematologist and hope to hear back soon. I’ve been having difficulty getting in touch with her and may need to find someone who is more responsive.
There are medications other than HU. Sounds to me like you may be intolerant and may need to discontinue it quickly. I also couldn't tolerate HU....no vomiting but diarrhea, loss of appetite, unwanted weight loss. Am now on Besremi (after trying a number of other medications) and doing well.
I’m so glad you found an effective and tolerable alternative. Be well!
I had the same with HU. I put up with it for two years. I was given pills for nausea that helped a little. I had no idea there was lactose in it, maybe that was the problem? Anyway, I then went onto pegalated interferon which has been much better for me.
I assume you are taking Pegasys injections. May I ask you your experience….dosage, frequency, results? I am on Hydroxyurea and think I am becoming intolerant….headaches every day, Thanks, Eileen
hi Eileen, I started on 90mg Pegalated Interferon weekly . I am now injecting 45mg every three weeks with Platelet level maintained well within normal range.
I have had some issues with thyroid levels fluctuating and have developed a small lump on my thyroid. I was on thyroxine before diagnosis. Whether that is the Peg or it would have occurred anyway, who knows?
Otherwise I have few side effects. I do keep hydrated and eat an anti-inflammatory diet, no sugars, as much as I can, which seems to help with energy levels and overall.
I hope that helps somewhat. I put up with the HU side effects for too long. The change has been positive for me.
Take care
Sue
The printed advice I was given stated to take at same time of day….half hour before or half hour after eating…with a full glass of water. Also very important is to drink minimum of 64 ounces of water daily to help get rid of toxic effect. If my stomach bothers me at all I drink a glass of water.
Eileen
I was drinking lots of water, but I always do. I was advised by my pharmacist to have a full stomach before taking the hu. So glad you can get relief by staying hydrated.
Glad you are doing better and to know there are alternatives.
Hello ETXgran,
I do remember that when I started taking Hydroxy, I was also prescribed another medication for 10 days, because Hydroxy takes some getting used to. It was Alopurino to treat Uric acid. That was five years ago and now I am back to just aspirin. I eventually became completely intolerant to hydroxy so took the decision to stop.I really hope that you can get this under control, because it did take my platelet count down by half. Good Luck.
Hugs, Marci
Thanks so much for this information. I’m seeing my doctor on Tuesday and I hope to get some answers before taking anymore hydroxy. You and others on this forum have been so helpful and kind!
Marci…you said you stopped taking Hydroxyurea and are only on aspirin. How long has it been since you stopped and what are your platelets now. Thanks, Eileen
Hello Eileen, First I must say that I do not in any way recommend stopping your medication without a discussion with your health professionals. I live in Gran Canaria and the treatment here is not great. I stopped taking Hydroxy because I had severe reactions to it which seemed to be getting worse the longer I took it. My live was becoming intolerable. They would not offer me an alternative. That was 16 months ago. I take only aspirin now and a medication to stop heartburn. My platelets have risen but as yet not to any great degree. There are not any MPN specialists in the Canary Islands and they don’t take it very seriously here. I prefer to enjoy my daughter and grandchildren than to live under the shadow of ill health all the time. I feel human again now . I hope things go well for you and you can get the professional help that you need.
Hugs Marci
I am 78 and started with 500 mg daily Hydroxyurea last year. I had daily headaches and felt lightheaded frequently. I was taken off it for a few weeks and then put back on 500 mg HU every other day. So far headaches less. I am getting monthly CBC so hope I can continue low dose every other week. I am on a blood thinner for AFib.
I am amazed at the dosage some people have to take to control their platelets.
Best wishes to you, Eileen
Me too Eileen. Some people are taking 1500 Hydroxy in a day. I was only on one and for the first few years, I coped. Then the symptoms became gradually worse until l could no longer cope. I was utterly miserable and not nice to be around. I cannot and will not ever go back on it. I will face the consequences instead. I wish you good outcomes Eileen and lots of luck,
Hugs, Marci
😊You are welcome. We are all in the same boat. 🤞
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