PV treatment side effects
Treatment for PV can cause unwanted effects. Tell your hospital team if you notice any changes to how you feel, so that they can help you.
Common side effects
Some side effects are more common than others. But it’s important to understand that no two people react to treatment in the same way. So even people with the same condition on the same treatment will have different side effects.
You won’t have all the possible side effects. In fact, you may not have any. But if you do notice a change, tell your hospital team. They can prescribe medicine to help with side effects and suggest self-help tips to ease the symptoms.
People with PV have mentioned these side effects:
- itching
- hair loss
- hot sweats
- feeling extremely cold
- restless legs
- blurred vision
- weight changes (could be loss or gain)
- diarrhoea (frequent watery poos)
- constipation (not being able to poo at all).
We have information about common side effects of blood cancer treatment, including hair loss, fatigue (extreme tiredness) and problems with your digestive system.
Sometimes, it’s difficult to know what’s the side effect of a drug, what’s an effect of PV, and what’s unrelated. In all cases, the best thing is to talk to your hospital team, or contact our Support Service for help with that conversation.
"For a long time, I found that when my skin got wet, I had very intense itching. Now, if I have a hot shower, I finish off with cold water – as cold as I can stand it – and then it’s fine."
Jeremy, living with PV since 2018
Read Looking after yourself with PV for tips on managing itching, fatigue, infection risk and your mental health.
More information from patient leaflets
Your hospital team will talk through common side effects of the medicines they prescribe and give you information on how to manage side effects. Your doctor or nurse will also answer any questions you have about side effects.
You should be given a patient leaflet with any drugs you have. This lists side effects according to how common they are. You can also find these leaflets online on the EMC (Electronic Medicines Compendium) website.
It can be alarming to read a long list of side effects. But drug manufacturers are obliged to include every side effect that’s been reported to them, and that’s why the list is so long.
Talk to your hospital team or our Support Service if you are worried about side effects.
The risk of other cancers
Some treatments may increase the chance of PV developing into a different type of blood cancer. but your doctor will consider this when they decide on your treatment. They will also give you regular check-ups.
Hydroxycarbamide may increase the chance developing acute myeloid leukaemia if it is taken for a long time.
People taking hydroxycarbamide may also have an increased risk of skin cancer, so it’s important always to follow standard sun safety advice.
Busulfan increases the risk of developing acute myeloid leukaemia if used over a long period. For this reason, it isn’t often recommended for younger people.
Preserving your fertility
Some drugs can affect your ability to have children. If you want to start a family or may want to in the future, talk to your hospital team before you start treatment. It may affect your treatment plan.
Taking daily aspirin or clopidogrel alone will not affect your fertility. But if you need more treatment (cytoreduction), you may be offered interferon as it’s less likely to cause fertility problems.
You may have the option of fertility treatment such as freezing your eggs or sperm before you start treatment for PV, but fertility treatments themselves can raise your risk of blood clots, so talk to your hospital team before you look into this.
See our information about fertility problems, and read Kerry’s story about having fertility treatment before she started treatment for blood cancer.
Using contraception if you’re having chemotherapy
It’s important to use a barrier method of contraception such as condoms while you or a sexual partner are having treatment with chemotherapy drugs. This includes hydroxycarbamide and busulfan. There are two important reasons for this:
- Chemotherapy drugs may be present in bodily fluids and passed on during sex, so you must use barrier contraception even if you cannot get pregnant.
- Chemotherapy may cause damage to a growing baby, so it is essential to avoid getting pregnant. This is the case whichever partner is having chemotherapy, as it can affect sperm as well as eggs.
If you want to try for a baby now or in the future, talk to your hospital team. They may be able to change your treatment.
The combined contraceptive pill
There is evidence that the combined contraceptive pill increases the risk of blood clots. So it is usually not suitable for women who have PV. If you are taking the combined pill, tell your hospital team and ask your GP or contraception clinic about other methods of contraception.
Managing the menopause
Many women take hormone replacement therapy (HRT) to help with symptoms of the menopause.
There is evidence that HRT tablets can increase in your risk of blood clots, so if you are taking HRT as a tablet, it’s important to discuss this your hospital team or GP. There’s no evidence that HRT patches or gels increase your risk of blood clots, so there are other types of HRT you can use.
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