Polycythaemia vera, Hydroxycarbamide and possible side-effects

[Barb17]

Hi all,

I am 63 and have been on Hydroxycarbamide, aspirin, cetirizine and omeprazole since 2017 when I was diagnosed with PV. I am plagued with urinary infections (UTIs) sometimes as much as once a month. I have had loads of tests to see if there are local eg bladder problems and there aren’t.

Does anyone else get repeated infections? Could it be lowered white blood cells? Thinking lowered immunity? My Haematologist is at a loss to explain it as is my GP.

Have to have a reserve pack of Nitrofurantoin, an antibiotic at all times,

Interested to hear if anyone has the same issue or is it just me?

Best wishes,

Barbara

[MCW22]

When I first started on hydroxycarbomide I became very sore in my intimate area after only my second tablet. Of course the consultant said it wasn't connected but I never accepted that. I also had mild nausea. It took a couple of months for everything to settle down, after which there were no more side effects. I took it for 2 years before being changed to Ruxolitinib.

Carol

[hunter5582]

HU can indeed weaken your immune system. If your leukocytes are too low due to the HU, then it is particularly clear that your immune system has been compromised. Repeated use of an antibiotic is never a good idea, but neither is unremitting UTIs. So you are on the horns of a dilemma. There is too little information to say for sure, but it may be that you are HU-intolerant. Perhaps another medication should be considered.

Until you get this sorted out, hopefully soon, it sounds like all you can do is take the best care of your body possible. Repeated use of antibiotics is devastating to the microbiome in your gut. This can have a wide range of negative impacts on your health beyond digestive issues. Hopefully you have already been advised to take a probiotic supplement and include probiotics and prebiotic foods in your diet.

While some people tolerate HU with little or no problems, others cannot. I am HU-intolerant. I had toxic effects even at sub-therapeutic doses. HU is noted by the NIH to be "a highly toxic medication with a low therapeutic index." Some level of toxicity is fairly common at therapeutic doses. Nevertheless, HU is considered to be a "relatively well tolerated" medication. (I will relatively pithily note that sometimes it is the docs who seem to tolerate the adverse effects better than we do).

It is important to understand that all of the chemotherapies have potential adverse effects. Each has its own risk/benefit profile. We each respond differently to each of these medications. Sometimes trial and error is the only way to find what is best for you. Many docs start with HU since it is part of a standard treatment protocol and is the cheapest of all of the meds. Some formularies may even require the docs to start there.

Please be sure to follow up ASAP on your concerns. They are well founded. We certainly can't say for sure that the HU is causing the problem, but if the problem started/got worse after starting the HU - then it is a reasonable conclusion that HU is the issue. I have learned the hard way the assertive patients receive higher quality care. Passive patients do not. Please push for the quality of care you deserve and get your concerns addressed.

[Applesnpears]

The risk of uti's increases with age (men and women).

Hydroxyurea can also increase the risk of infections by reducing your immune function.

Have your doctors checked for changes in your white blood cell counts.

Another possibility is that the course of antibiotics is not completely clearing the infection and reemerges each month. Worth discussing using a different antibiotic, perhaps over two weeks rather than five days.