Polycythemia Vera

Hello cathy,

Shingles is caused by a virus so is not directly linked to your having PV. Have you been feeling run down lately? I have never had shingles but my other half got them twice when he was foung through a bad patch at work.

The best thing for you to do is to go to your GP. You will be given a cream for the shingles.

I have always had mouth ulcers when life has been stressful. Again, ask your GP for something stronger than an over the counter medicine,

Good luck.

Hi Cathy shingles can occur if you had the chicken pox. The herpes virus lays dormant in our system until something triggers it to recur in the form of shingles. If you never had chicken pox, you can't get shingles. The treatment should be an anti-viral drug called Zovarax or Valtrek. Taken orally, it can hasten recovery. There's also topical cream, Zovirax to apply to the affected area. There is a vaccination called Shingrex, which you might be able to get to prevent further outbreaks. Ask your dr about it. Mouth ulcers I'm not sure of as to the cause. Usually people on Hydroxyurea get them. I've read of many remedies for mouth sores. The best I have found is Orabase, generic name is Triamcinolone Acetonide. It's prescription only. Comes in a tiny tube, so if you decide to get it, ask for refills. Good luck Zap, 

Your symptoms seem very extreme I do feel very sorry for you. Can you please make a decision to see your doctor/ or ring your hyeamotogist  secretary tomorrow to talk about all your symptoms, or get a relative or friend to do so if u are not well  enough. I think the amount of phlebotomise  are weakening  your immune system ( I’m no Doctor) but common sense says ...Hang on a moment, things are going to fast... slow down . I’ve not heard as many as that before. Someone needs to take a look at you and that needs to be done Now! Hope that helps xx

Hi cathy. I too have PV and get mouth blood blisters and canker sores a lot. I am taking Hydroxyurea and I thought the meds may be causing me to be allergic to certain foods. I found that if I eat no spice and especially cinnamon, I don't usually get the sores. Even a little bit of spice gives me mouth sores. You didn't mention taking any meds yet. However, you could still be allergic to certain foods. Hope this is of some help to you. harrishill 

Hi Cathy I agree with PO32 that you're having too many phlebotomies. Can you give us your numbers - platelets, hematocrit, RBC, WBC, hemaglobin. Are you on any meds beside aspirin? How long have you been dx? Have you had a bone marrow biopsy? I think I read that more than 9 phlebotomies a year are too many. Zap

Hi Cathy,

It is quite unusual for one to suffer from the symptoms you explain so early in your treatment.   As has already been suggested by others, best thing is to see your GP for advice.  As Angela says, shingles is a virus and not normally associated with PV whilst mouth ulcers are more prevalent with drug therapy and can be treated with mouth washes.  Your doctor can treat these but it might just be worth having a word with your Haematologist about the early onset of such problems.  Good luck.

Peter.

Hi Cathy, when I was first diagnosed with PV in October 2017, I was  having  venesection and hydroxy. I too got mouth ulcers all the time. Thankfully over a period of 5 months they have subsided. Like others I did not get shingles. 

I did not take medication for them.

Over time I am still in hydroxy but no more venesection thankfully.

Cheers