Still getting PV symptoms...

[Hermann]

Hi all. Having been diagnosed with PV 4 years ago, my blood counts are now "within acceptable levels" for my condition, according to my consultant. Nevertheless, I still suffer the symptoms of fatigue, headaches, itching and joint pain. My consultant is adamant this can't be anything to do with my PV but I have heard this isn't necessarily true. Does anyone else get this, even though they are supposedly responding to treatment? It's driving me crazy and I feel I am not being listened to or believed!

[PT99]

Hi

I was also diagnosed with PV 4 years ago and like you suffer with exactly thoses symptoms despite having levels pretty much in normal range.

I suppose I’ve just learnt to manage and live with them as part of the condition but sometimes it’s not easy.

I can’t say I’ve really discussed it with my consultant in depth as I’ve assumed it’s all part and parcel of living with PV.

Pete

[Hermann in reply to PT99]

Cheers for the reply. My problem is that, my employers have written to him, with my permission, to ascertain what adjustments they can make for me at work. Because of his views, they now think I am exaggerating my symptoms.

Really frustrated....

[PT99 in reply to Hermann]

I put in a request for flexible working to work from home 2 or 3 of days a week because of travel and fatigue. They took my consultant’s details but it was handled by occupational health who used an independent doctor, so as far as I’m aware, they didn’t contact my consultant. It felt like I was jumping through hoops to get it but in the end it was worth it.

Are you looking for something similar?

[friendofpiglet]

You are not alone in this. I believe a few of us have been told that our counts are fine so we must feel OK. We know when we feel rough, not the haematologist!

Venesections make us tired and some are additionally fatigued by our medication.

Andy

[Aime]

Definitely not alone as the others say. Research has shown that blood counts and worsening of symptoms like fatigue don’t always correlate. Try increasing hydration, eating foods like pasta and nuts and exercise or rest as your body tells you to. Sometimes you can feel like crap, exercise and feel so much better, other times you can exercise and totally floor yourself - listen to your body. Every sympathy Aime xx😺

[fee13]

Yes, as others' have stated, it is common with all MPN's that blood work is fine but symptoms are still present.

[jane13]

what an annoying position to be in! my previous consultant was the same "yr counts r ok u can't have symptoms" but at least i didn't have him telling my employer !

[Peter18]

I was diagnosed with PV in February this year & take aspirin and Hydroxy daily. My counts have been going down. There have always been some symptoms but from time to time I seem to get a week of feeling really grim. Eg since last weekend, bad dizziness and muggy head & fatigue & aches worse than normal. I’ve received no enlightenment from the haemo consultants so just have to stiffen my upper lip again I suppose. You have my commiserations! Very best wishes and keep positive : )

[MCW22]

I think most consultants have the attitude that if the blood figures are OK then so is the patient, but we all know that's not so. Fatigue, itching, blurred vision, joint pain, you only have to look on the Internet to see they are part of the condition. I think that we know more than some of the doctors.

Carol

[Sheryljean]

Morning Herman. I know what you are saying about the pain I joints..etc. I was diagnosed with PV aftrer multiple iron infusions, which triggered PV. I was out on Hydrea this past April and the joints and nausea was bad. I was taken off of Hydrea and am now on JAKAFI which seems to have helped with this. I have found if I wake up earlier than normal..it helps to get the joints and other pain to relax and go away, it it does come back at night. Nausea I believe will always be there. My dr says that I am more sensitive to this side effect so I am dealing with that . Fatigue I get so I plan the days where I do not have to be up so early so I can sleep in a smidge more.

You will find a way for yourself, on how to adjust to these side effects. My employer has it so I can work from home when too fatigued to go in.

Hope you will get better and enjoy life that much more...👍🏻👍🏻👻

[Mysi]

You are exhibiting all of the symptoms associated with PV. You’re not going mad. I understand how you feel, as will many others. Listen to your body, rest when fatigued, perhaps your GP will prescribe an antihistamine for itching and analgesics for bone pain. Hope you get some respite soon. X

[Heidi-W]

Its so frustrating when you don't get support from your medical team. As previous posts on this matter have highlighted although your counts are controlled our bone marrow is still not behaving and is likely producing rubbish blood cells and releasing cytokines causing all the classic issues like fatigue. The treatments are generally helping to reduce our stroke risk but don't necessarily help with the other symptoms.

I found my occy health dr supportive probably because he didn't have in depth knowledge of the the subject and I flagged up a haematology article for him kindly suggested by rachelthepotter on here- its called current and future treatment options in PV from 2015 by M Griesshammer in the annals of haematology- if you print that off it may help your case. I'm getting to the point of wanting to send it around to my GP work colleagues to raise awareness too and hopefully get a bit more empathy from them if I am on a go slow due to fatigue issues.

Anyway good luck and hope you find a more sympathetic medical ear soon.

Heidi

[Applesnpears]

Hermann. Can you get a referral to see another consultant? Ideally one that is more familiar with MPNs. PV is not just a matter of managing blood counts. You dont say if you are taking any medication or just having venesections but you need to find a haemologist who understands the other symptoms that PV can cause and recognises that these can change/develop over time. Good luck.

[Dennykev]

My partner was diagnosed with PV recently, but has had this really itchy rash in his ankles and feet. They said to us they weren’t related ?

[souplover]

I know Hermann's post was from a while ago, but I just came across it. Hermann, this is exactly my problem. I have PV and my numbers are now under control and looking pretty good according to my hematologist, but I'm suffering from a lot of fatigue, which she tells me isn't a big problem with PV. It makes me a little crazy.

Being on this list and hearing from others who are also suffering fatigue has helped a lot. I'm exercising, now drinking more water, pushing myself, but it sometimes feels like an uphill climb.