update

[Mandz12]

I have pv and lupus diagnosed January 2022.

All my head is messed up with the news

I was allocated a key worker but never hear anything from her.

should I have more contact with the consultant I am currently on 2tablets a day.chrmo ones.

.

[hunter5582]

You should be in regular contact with a consultant as you initiate treatment. Assuming you are referring to hydroxycarbamide (AKA hydroxyurea - HU) as the chemotherapy. the standard protocol is to monitor with a CBC every two weeks until stable. You should also be doing regular CMPs to monitor kidney and liver function until tolerance is established.

You most certainly should be in regular contact with your care team. This is particularly important in the beginning, especially with a medically complex case. You may have to be the one to initiate contact. Assertive patients receive higher quality care. Passive patients do not.

The key to managing PV is to control erythrocytosis. This is usually measured using Hematocrit (HCT). The goal is HCT<42/43% for females and HCT<45% for males. Cytoreduction using medications is one strategy. It is often used in conjunction with aspirin as the only treatment for people under age 60 (low risk PV). HU is usually not recommended for people under age 60 due to the risks associated with long-term use. WItht he co-occurring lupus, your status may be different.

You should have been provided some basic information on HU. Here is some information just in case you did not get this.

online.epocrates.com/drugs/...

drugs.com/monograph/hydroxy...

oralchemoedsheets.com/sheet...

ethrombo.blogspot.com/2017/...

It is very important to ensure that you have a MPN Specialist on your care team. This is the only was to ensure an optimal MPN care plan. MPNs are rare disorders. Many hematologists lack experience with MPNs and how to treat them. Here is a list just in case.

mpnforum.com/list-hem./

Suggest that you contact a MPN Specialist ASAP about your care plan.

[Mazcd Partner MPNVoice]

hello Mandz12, you should be having regular appointments, either in-person or phone contact, with your haematologist to have your blood counts checked and to discuss how you are feeling and review your medication. The time span between each appointment can vary, some people are seen every 6 weeks, some every 3 months, some twice a year.

It is worth getting in touch with your haematology nurse specialist/key worker to speak to her/him to discuss this and to talk about how you are feeling.

It might help you to have a buddy to talk to, a buddy is another patient who has the same MPN and takes the same medication and can give you support and advice from the perspective of someone who really does understand how you are feeling, if you think this would help please email me at [e-mail].

Best wishes, Maz

[Mandz12 in reply to Mazcd]

I have my bloods every 8 week and phone me 2 days after I am on clopidogrel and chemo medication. Constantly tired and covered inbryises. I live in rotherham.

[Mazcd Partner MPNVoice in reply to Mandz12]

Hi Mandz12, you definitely need to tell them about the bruises and feeling tired all the time and ask for advice on this. Best wishes, Maz

[hunter5582 in reply to Mandz12]

Mazcd is 110% correct. Excessive hemorrhage is a potentially serious adverse effect of clopidogrel. Note that feeling constantly tired when on clopidogrel is one of the things you are supposed to call the doctor about per NHS guidelines. nhs.uk/medicines/clopidogrel/

[Mandz12]

I have told them and they not done anything about it said I have to keep taking them

[ciye in reply to Mandz12]

Can you not take aspirin, I was told that was a better anti platelet medication.

[Mandz12 in reply to ciye]

I take clopidogrel instead of aspirin

[hunter5582 in reply to Mandz12]

Clopidogrel is an older, and cheaper, blood thinner. It is a DOAC. There are newer medications known as NOACs such as Eliquis. These blood thinners have a lower risk of hemorrhage than clopridogrel. They are also more expensive. As ciye points out, aspirin is also an option.

Given your profile, some kind of blood thinning medication is certainly indicated. However, there are other choices. You do not "have" to take any medication you do not deem in your best interests. You have other choices.

Suggest you seek a second opinion from a MPN Specialist on this issue.

[Wyebird]

Hi Mandy I live in Tickhill I have ET, Maz has given you sound advise. It’s awful if your key worker hasn’t made contact with you. I was never even given one when I was under Barnsley hospital. It had a huge positive when I was.

[Mandz12]

Glad to hear you doing ok x

[Jazzyb50]

Hi Mandy. I'm from Sheffield and was diagnosed with PV in 2007, a long time ago but I can remember what a worrying time it is. I think someone has already pointed out, you should be allocated a nursing specialist, who is there for you to contact as and when you need to. Has this been set up for you? xx

[Mandz12 in reply to Jazzyb50]

Have you ever been ti see a mpn specialist xx

[Jazzyb50 in reply to Mandz12]

No I've not. I've always been under haematology at the Hallamshire, Sheffield and as far as I am aware there isn't an MPN specialist there. I have a telephone number for the nursing specialist. If they don't answer when you ring they will always call back if you leave a voicemail xx

[Mandz12 in reply to Jazzyb50]

How is your health are you doing okX

[Jazzyb50 in reply to Mandz12]

My bloods are all in range at the moment but that doesn't necessarily mean you feel ok. I was on Hydroxycarbamide for about 5 years until it stopped working and also possibly caused a skin cancer on my face (I do have a previous history of malignant melanoma and basal cell carcinoma, so with hindsight Hydroxycarbamide probably wasn't great for me, although I tolerated it well) I then started on Peg interferon about 4 year ago. It's a slow burner and took over 2 years to get the numbers in range and unfortunately I don't tolerate the side effects very well but if it works I'll put up with that xx

[Mandz12]

I have a key worker x

[FAM_KT]

Hi Mandy, I’m under Sheffield Hallam - I was diagnosed with ET in 2020 but recently got the news that it is primary MF after a BMB - I have appointments every 6/8 weeks mainly over the phone - I think the longest I have been is 8 weeks but my platelets fluctuate so much, so I guess it depends on how stable your bloods are to how long they leave it in between. I’m also under hepatology and tend to see them every 6/8/12 weeks depending on on how my varices are presenting at the time so constantly feel like I am either at an appointment or in touch with the hospital in some shape or form regularly.

It is defiantly worth reaching out to them if you are struggling - or speaking with someone from MPN Voice about a buddy - I have my days I think it is totally normal to feel how you are - over the last 2 years I have had lots of ups and downs - I speak with the nurses I even email them when I have questions they are really good at getting back to me - don’t be afraid to let them know who you are and be persistent with them - you will get to know each other well! One thing I have found is that we have to sometimes manage our own health a little to get what we need and people on here are happy to help offer advice from their own experience or point you in the right direction - if you have any concerns about your medication the consultants are the best people to speak with - it’s amazing how much I have learnt about the human body over 2 years and also I am still learning about the treatments available - especially from this site - I take the information to my consultant and speak with him about it to make sure that I am getting what I need - it also makes them aware that your are doing your homework and are actively wanting to be involved in your treatment plan!

Take care

[Mandz12]

You sound really positive I will take your advise thank you x