SYMPTOMS OF PRIMARY POLYCYTHAEMIA

[Heather270240]

I have been told by my GP and Haematologist that I should have no noticeable symptoms with Polycythaemia . However since being diagnosed in March 2017 I have had severe lightheadedness, nauseousness and extreme fatigue. I take hydroxycarbamide 500 mg and Aspirin 75 mg. Are these symptoms the medication or the illness? Can members of this forum help please.

[Maggie-ol]

Hi Heather

Sorry you're having these symptoms. I was disgnosed and began Hydroxy in Dec 2016. Earlier this year I had similar symptoms to those you mention but after having bloods done I was told by my Haematologist that my results were good and my symptoms were unrelated to my PV. I had to visit my GP last week as I was feeling breathless throughout the day with lightheadedness, nausea, palpitations and sweating profusely, especially around the head, my hair looks as though I've just washed it often! She took my bloods and I have to ring this week for the results. I suspect I'll again be told my results are all good. I feel it's probably the Hydroxy causing my symptoms but these new symptoms are so much less severe than those I was experiencing before diagnosis.

Margaret

[redumbrella]

Hi Heather,

I was diagnosed with PV 13 years ago and have suffered with extreme fatigue throughout, your fatigue is certainly down to your PV as most MPN sufferers will relate to.

I do not suffer from the other symptons you mention and am not on Hydroxia so cannot help you on these.

Keep Well

Garry

[EleanorPV]

When I was on HU I also suffered from lightheadedness and nausea. Fatigue is definitely related to PV.

[jillydabrat]

When I read stories like yours i feel like shaking the consultants up who say that there are no symptoms with PV. Good God, I wish they could feel how we feel. I had numbness in my feet, dizziness, debilitating tiredness and prickly skin. What you are feeling is typical symptoms so you need to educate your consultant. If it helps, print off some of the articles you will find in here or better still, change your consultant.

[Inca]

Heather ,did you not have any symptoms before diagnosis ? Seems odd the Doctor said what he said!!! Keep strong ,you will feel better soon.

[Heather270240]

Hi Inca. Yes for several years I have had the symptoms and GP sent me to a Neurologist, chest xrays full spinal MRI, and PET scan all of which showed nothing untoward it wasn't until GP sent me to King's College Hospital Imuology Department as a last resort when they noticed my high platelet count. They immediately contacted my GP who said it wasn't anything to worry about and did nothing. Luckily King's phoned me to find out whether action had been taken and was horrified when I told them the outcome. They then phoned my GP and I was seen by a Haematologist within a couple of days. She still won't believe my symptoms are MPN related.

[nightssky in reply to Heather270240]

hi Hun I'm new here and waiting for my 1st haematology appt ,

I'm the uk on nhs my go is good she has a fairly good understanding on PRV has that's what she referred me for ...I'm still on a steep learning curve but my advise to you is ask for a second opinion within your surgery or change your doctors all together & when changing doc's or asking for a second opinion then you can put foward your concerns as to the fact your Gp is not informed enough with your illness to provide you with the relevant care & understanding you deserve ..it's a rare disease that needs a doctor that's at least a bit knowledgeable on the subject or who would be prepared to take time to enrol themselves on a course of the disease subject matter ...this is going to ongoing for the rest of your life there is no cure ...but with the correct treatment & compasion from your medical team Gp included you will cope much better.

take care of your self x

[Inca]

Then he should read this MPN site,how miserable for you to have such a negative attitude from a Medical man. Of course there are symptoms,all on here know that very well. My GP and Consultant liaise together after each monthly blood test,both know the fatigue and woolly head are P V,but that Hydrea can also cause similar.I am very aware of that at the mo ,as my dose is increased ,two months now to get H C T down......and the heat that really knocks us out more than 'normal' people,I bet you feel like punching his nose.!!!!' Think I would have to have to have my hands tied up if I were you !!!! Sorry ,I am a very peaceful person really ,but like Jilly ,it infuriates me so to hear of your treatment by a Medic who should know better.Sending you Best Wishes .Sally.

[Inca]

Sorry,woman Doctor,how unusual ,they are usually more sympathetic.Mis read your mail,specs on now!!

[Aime]

Hi Heather, sorry to hear of your symptoms which are definitely related to your PV and are also commonplace with ET and MF. If you go onto the MPN Voice website you will find verified trustworthy information and research which will confirm your symptoms are all related to PV. I have had PV since 2012 and suffer the same symptoms. I’m not on any meds.

With regards to your GP and any other medics who are telling you otherwise, I would change them for those with knowledge as I wouldn’t feel safe or trust someone who was going against expert, worldwide research treating me. My life is too precious to me and my family. We are so lucky that we have contact with experts through Maz on this forum who can help us get trustworthy advice and information about our MPN.

Hope this helps as like Jilly and Sally my blood boils when I hear of patients getting such advice. I have become much more politely assertive since 2012 and will ask or politely demand if I have to! Kindest regards Aime xx😺😺😼😼

[Wyebird]

Hi Heather,

I started out on that dose and had no side affects. Actually started to feel better on 1000 mg a day. We are all different and respond differently. I’m also an ET patient.

Hope all will become well, mention your symptoms to your haemo.

[Bluetop]

Hi Heather,

I had symptoms before diagnosis. Once I started on hydroxy some -including visual disturbances and fatigue stopped.