Taking hydroxycarbamide

[Jane10]

I’ve never asked a question before, I have ET and take hydroxycarbamide. I take 3 tablets a day and my consultant says that taking them all at once in the morning is fine... it doesn’t seem right as normally you would space medication out? Also he says there really are no side effects but I’ve been taking for a long time now and am quite concerned. He seems to make my concerns seem trivial. Any advice?

[Superwoman]

Hi Jane, I take mine after my breakfast, and again at weekends when I take two Sat and Sun after breakfast, I have to take other tablets, which are Thyroxine when I wake up, blood pressure tablet after shower, and Aspirin with breakfast as it is Enteric Coated, It’s never been a problem. I believe you can take morning and night some people take them at night which also works well for them.

Jean

[Cja1956]

Hi, Jane,

I have ET as well and hydroxurea seemed to make me light-headed and dizzy. I used to take 3/day, which I spaced out during the day; morning, afternoon, and night. Sometimes I would forget the afternoon pill so I eventually started taking all of them in the evening before bedtime. Tell your doctor how you are feeling and I’m sure you can make some adjustments. Take care and feel better.

[WileyFrench]

I take HU and clopidogrel and low-dose aspirin all at once in the morning with no issues. There are lots of potential side effects with HU but I haven’t experienced any and there are lots of people on this forum who say they haven’t either.

[Tico]

Hi jane, I take 3 a day all at once, 4 at weekends. I actually take 11 tablets in total just in the mornings all together for other medical issues. That's the way I was alway's given them in hospital too.Gp and Haemo say thats fine because of my night dose of other meds. Highest dose of hydrea i've took is 5 a day and have actually taken them altogether. Sometimes think I rattle when walking! Lol.🤣 Atb, tina.🤗

[francesb]

Hi, I take mine last thing at night, I was told it doesn’t matter when they are taken. They do have side effects which your consultant can read on the patient information leaflet however many people do not experience any side effects so perhaps that’s what he means. If you feel he trivialises your concerns maybe it’s time to change consultants, preferably to an MPN specialist, I believe Maz can provide a list of where consultants are, good luck.

[Ebot]

I only take two max (and not every day) but having read the advice on this Forum decided on balance to take them at night so if had any side effects I’d sleep through them. I haven’t had any side effects but my dose has been increased step by step. There have been a few posts where people have noticed side effects when the dose has been increased substantially - you don’t say what you were on before. My haem (at Guy’s) is super cautious about increasing dosage. If you’ve been managing fine on your previous dose you’ll most likely be fine now but if you do experience side effects then maybe revisit the dosage? Step up more gradually? And perhaps there might be a question worth asking about whether HU is still the most effective drug given that you need to up the dosage. All the best.

[jillydabrat]

Hi, take 1000mg of Hydroxy at night along with warfarin, mitrazapine, losartin, MST, pregablin and nortriptaline. I take all these at once with no problems at all.

[Helena303 in reply to jillydabrat]

I take my 1000 at night and a Mitrazapine 15mg.

[Stay05]

May be get a second opinion?

[Lifam]

I fact HU has lots of side effects BUT not everyone has it, feeling dizzy is one the mild one, some people has very bad side effects and some has none even taking it for years. You only have to type the Hydroxyuear on Google you'll get the full detail of the drug. Sometime it's good to read about it because some effects we can actually protect ourselves from it.

[hunter5582]

By three HU tabs I am assuming you mean 1500mg. I think that you can see by the responses below that the answer is it all depends on how your body responds as to how to take the doses. Different people respond differently. If you are concerned, then try spacing them out and see if it makes any difference. it is your body - it is your choice. FYI - The half-life of HU is 3-4 hours and it is excreted through your urine.

It is important to understand how HU or any medication you take works. HU is a cytostatic medication. It interferes with DNA activity, slowing hematopoiesis, thus reducing the production of all types of blood cells. That is its intended benefit. However, HU is not a benign substance. Like many forms of chemotherapy it is a toxin. HU can break allele strands and it interferes with the DNA self-repair function. This is one of the reasons it has adverse effects. The doctor has to carefully balance your dose so that it is more toxic to the cancer than it is to the rest of your body. Some people are able to tolerate HU and benefit from it - others are not. I am one of the latter. I had toxic effects even at low doses

There are some things to be aware of if your are taking HU. Many of these things can be found in patient education leaflets. Unfortunately the docs do not always take the time to review all of this with patients. Pharmacists seem to be more willing to review this in my experience. HU is teratogenic - it causes birth defects. You must not get pregnant while on it. Women taking HU need to wait 6 months post-discontinue HU and men must wait 1 year post-discontinue to have children. HU passes into semen and vaginal secretions, so sexually active couples are advised to use a condom to avoid exposure to the partner not taking HU. Women of childbearing years not taking HU are advised to wear gloves if even handling the bottle of HU. For men, HU can cause hypogonadism. It is known to cause oligospermia/azoospermia. Recent research also indicates possible decreased testosterone levels (this finding not in common clinical practice yet). HU is mutagenic and is a known carcinogen (particularly skin cancer). It is very important to use sun screen and avoid sun exposure. HU is suspected to be leukemogenic, but this is controversial and not all docs believe it. HU is immunosuppressant and you cannot take live vaccines while on it. Avoiding exposure to contagious diseases is also advisable. The mouth ulcers commonly reported with HU is a result of immunosuppression according to my doc. I also experienced thrush and leukoplakia (damage to surface of tongue) due to HU. HU can compromise your intestinal endothelium (causes constipation/flatulence) - another thing I experienced. A more serious complication of HU is that it can compromise vascular endothelium - causing vascular ulcerations. Skin ulcers, commonly on lower extremities, can lead to gangrene. There is more - just reference your patient education leaflets and talk to your pharmacist to know what to watch for.

It is important to understand that all forms of chemotherapy - all medications - come with risks and benefits. You may be one of the people with an MPN who benefit from HU without experiencing significant side effects. Many doctors seem dismissive of the risks of HU, which is concerning for those of us who do experience HU intolerance. Hopefully that will never be the case for you. Ultimately it is your responsibility to educate yourself about all of the medications you take and their interactions. Your doc and pharmacist should be helping to monitor all of your meds, but it is your body and you know best how you are reacting. I use epocrates.com/ as a free resource for my use of meds. You can get drug monographs and check for interactions with this. Please bear in mind that you have a right to be fully informed and educated about all the meds you take. You deserve to have all of your concerns and questions answered and not just dismissed. I have found that assertive patients receive higher quality care than passive ones. Never forget that the doc works for you, not the other way around. All providers have an ethical responsibility to weigh risks and benefits of treatment options and then let you decide what course of treatment is best based on your goals and priorities. The decision regarding what meds to take it yours, not the doctors. Doctors recommend/prescribe - patients decide.

Sorry to run so long with this, but I have experienced negative consequences when I was too passive and trusting in receiving medical care. I have learned to be very assertive and to work hard to educate myself about all medical conditions and their treatment. I wish you all the best and hope you get all of your questions and concerns addressed.

[Mufftreacs]

Hi Jane,

I took HU for 13 years and large doses too. I took 3 per day for 4 days and 4 per day for the other 3.

I did split the times I took them up otherwise it made me feel tired. Like you, my consultant said I could take them altogether if I wished.

A few months ago I developed a tiny ulcer on my left ankle. Through this forum, I knew I was in trouble with toxicity from HU.

I changed my consultant and she immediately changed me to Anagralide,

My ulcer is still very sore but shows signs of healing at last,

I was happy on HU but ulcers are a definite sign of toxcicy, I always had mouth ulcers but learnt to cope with those.

Don’t worry about HU. Keep an eye out for small scabs around your ankle area but I do believe it is not s very common side effect.

Best wishes

Kate

[Doggy1903]

Your instincts seem very sound. I have 2 daily and one x3 per week a year on and all ok but spacing them I'm sure is fine and will maybe make you feel a bit safer.

Thanks for your comments as a great help to others. Sometimes the anxiety does not always get met with the greatest empathy!!