Venesection/Hydroxy increase

[Fionnuaghla]

I had my usual 8 weekly appointment at the hospital yesterday. In my two years+ since diagnosis with PV I have had a venesection every time, weekly at the beginning and eventually 8 weekly. I have also been taking aspirin and hydroxy.

My iron levels are very low so at my previous appointment which also included a venesection, my hydroxy dosage was increased to hopefully decrease my need for the venesections which further deplete my iron.

Yesterday, the specialist nurse said I needed a venesection but because of iron deficiency decided to further increase the hydroxy instead. I have gathered from all the lovely people on this site that approx 12 weekly hospital visits seem to be more the norm. I did not realize that my frequency is because of not ever making the magic 45 until the specialist explained that at this stage I should be classified as a "maintenance person" with a 12-week gap between appointments.

As far as I know, I am doing everything right, following the excellent advice on here and generally feeling okay. Has anyone else had a similar experience? My lovely friend suggested a Guinness every day to help my iron.

[Wyebird]

Hi Fionnuaghia, I’ m ET Calr and suffer from low Hb. Check with your hemotoligist what exactly you are lacking. I cannot have iron supplements. I’ve been told my iron level is good. I have all the ingredients for a good Hb level but my body just can’t produce it sufficently.

I suggest you question the reason for your anemia then research food that will give your body a boost.

Please keep me informed.

Good luck!

[EleanorPV]

We are all different. My iron levels needed to below 5 to stop my system from producing RBC. Thankfully I’m now on pegasys. After more than a year my iron levels are slowly rising.

[cvita71]

I also have PV, and I'm iron deficient because of venesuctions, but it's not recomended to take iron supplements because my erythrocytes feed on iron and then only thrive, so considering the diagnosis and high level od erythrocytes, the recommended level of the iron is maintained at a somewhat lower limit.

The hem incrised my HU therapy on two tablets a day, and now I have not been in the veinesuction for six months, and I feel great. HU is magic therapy I feel much batter on HU than after venesuctions.

[Roger41]

Hi, progress in an upward direction is for you good news.

When you have your Guinness and your iron meds make sure your tea or coffee consumption is with held for one hour either side.

This help with your absorption through the stomach linning.

Hope this helps.

[MCW22]

Hi Fi, you say you feel OK so why worry. I have PV and was told not to take anything with iron in. I take the occasional swig of metatone tonic and carry a pack of energy sweets in my handbag. Besides who in their right mind would willingly want to drink Guinness 😯👎

[Ebot]

You probably don’t want to be drinking Guiness. For many reasons(!) but primarily because it will risk increasing your iron. On the other hand, there is always dark chocolate .......... 🤔😁.

[MCW22 in reply to Ebot]

I was under the impression that we had to avoid foods that are iron rich. Dark chocolate falls into that category.