It was confirmed yesterday that I have been diagnosed with Polycythemia Vera .
They said 20% of my bone marrow has been affected. They are hopeful with interferon injections it can be managed . They said i would of had this for 5 years maybe 8 because my blood results have not been right since 2015 and the signs were ignored by my GP.
I ended up paying to see a private hematologist and they fast tracked me to the NHS for treatment.
I had an echocardiogram because of family history for heart conditions.and it shown up that I have an heart condition.
The consultant started me on the interferon alpha injections yesterday at the hospital but said it's a very low dose 45 mg , I need to inject every two weeks then after a few more weeks increase to weekly injections to see how my body responds. I was reluctant about starting the injections because of my heart problems.They advised , I'm at more risk with my heart problem not taking the injection. Because of the thick blood .
Any one else had any similar experiences
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Blonde25
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you don’t say what your counts are ? ,but if male your Hct needs to be under 45 and if female 42, if it’s above those figures it’s important to get venisected until you have Hct under control asap,thrombotic risk rises exponentially if Hct above those numbers, interferon may take a while at that dose to change counts hence utilise venisections if necessary until Interferon is lowering Hct. This is PV basics which any Haem should be doing.
I'm female and my count was high I've had two previous venesection . I never asked for the counts yesterday but all these figures confuse me , I'm sure they will write to the GP now so i will be able to read the information from that I think and make myself more informed? The consultant has been spot on to be fair it's my Gp who missed all the blood results and if I hadn't paid private would perhaps still be being fobbed off
Hello and welcome to the forum. Glad you found your way here. This is a great place to find support and information from others with MPNs.
PV is a condition that can be successfully managed. Effective management is very important when there are co-occurring cardiovascular conditions. It is important to learn more about PV and understand the terms and numbers that are being used.
Hematocrit (HCT) is the percentage of your total blood volume comprised of Red Blood Cells (RBCs). RBCs are also called erythrocytes. PV is a disorder where your body makes too many erythrocytes, which is referred to as erythrocytosis. HCT is the most common way to monitor erythrocytosis.
Erythrocytosis makes the blood too viscous (thick). This increases the risk for thrombosis (blood clots). It also raises blood pressure. The key to treating PV is to control erythrocytosis. The target for males is HCT<45%. the target for females is HCT<42/43%.
PEGinterferon alpha 2a (Pegasys) is one of the PEGylated interferons used to treat PV. 45mcg is the common starting dose. Some do find that a higher dose is needed, 90mcg is a common dose for people with PV. note that the full 180mcg dose is what is used to treat hepatitis. Note that PEG is measure in micrograms, not milligrams.
The reference to 20% of your marrow being affected sounds like the Variant Allele Frequency (AKA Mutant Allele Burden). This is the percentage of the hematopoietic stem cells (HSCs) that carry the JAK2 mutation. HSCs are the progenitor cells that make all types of blood cells. The JAK2 mutations causes the affected HSCs to make blood cells when they are not needed. This can be RBCs, platelets, White Blood Cells, or any combination of the three.
Not all of the HSCs are affected. Some are wild-type (normal). The JAK2 allele burden can affect how the PV presents. Higher allele burden is thought to be indicative of PV status and progression of the disease. The interferons have shown the ability to actually reduce the JAK2 allele burden. The interferons also help control erythrocytosis, which is the primary treatment goal.
Like you, I have PV. I was actually diagnosed with ET 30 years ago, but it progressed to PV 9 years ago. i also have a heart condition (tachycardia) along with a few other health conditions. I opted to treat with the interferons. I started on Pegasys then switched to Besremi. I am very glad that I opted for the interferons. This is the most effective and easiest to tolerate treatment that I have tried. I have also used hydroxyurea and venesection which were not suitable for me. All of my blood counts are well-controlled. I feel better on the interferons than I did before starting them. My allele burden has been reduced from 38% to 9% in 18 months of treatment at low doses. I am hopeful for a complete molecular remission.
Wishing you success in managing your PV and other health conditions.
Thank you for all your detailed knowledge. This will really help me to try and understand it better . I wasn't 100% sure what the 20% meant and I didn't ask them . Think I need to be more proactive.
I was worried about starting the interferon alpha because I'm waiting to see a cardiologist to find out what is wrong with my heart . The consultant said it would be ok to start it and not to worry so I had my first injection on Friday . Could I ask if you started interferon every two weeks ? I'm on fortnightly injections to see how things go .
Up to now apart from a little dizziness and a funny taste in my mouth and occasionally feeling sick I've been ok
When I started on PEG, it was at 45mcg weekly. This is a standard starting dose for many with MPNs. Some will start with less frequent dosing to evaluate how they are responding. Do note that Pegasys is used off-label for MPNs. This is OK as there is considerable research support and clinical experience using PEG for MPNs. The use indicated on the label is for hepatitis, with dosing at 180mcg/weekly. Some of what you read about PEG will be reflecting this higher dosing. Adverse effects are dose-related. Here is some information about PEG that you may find helpful.
All of the side effects you report are noted in the literature on Pegasys (see above). Note hta not all sources list the same side effects. That is why is is best to check multiple sources.
It is very important to be proactive in managing your care. Assertive patients receive higher quality care. passive patients do not. it is also important to educate yourself about MPNs in order to make the best decisions possible for yourself. There are excellent resources available. The MPN Voice website is an excellent place to start.mpnvoice.org.uk/
Thank you i will check those links and I really appreciate the support, it's taking me time to get my head around it all but I agree that being proactive is better than being passive.
I will be asking for my blood level counts at my next appointment, they indicated they want me to take weekly injections but wanted to monitor my response to them hence, fortnightly injection for the first 6 weeks . It may be because of my undiagnosed heart condition . Any way i really appreciate all your support and the links you have provided for me so thank so much and good luck with your treatments, apparently we are a rare breed 😘
We are indeed a rare breed. MPNs are very rare disorders.
Definitely get hard copies of all of your labs if you are not able to access them in a patient portal. Fortunately, I can see all of my labs in the portals my providers use. I can also use a historic view so I can track changes over time. You might also want to ask about whether a portal is available where you can see your labs yourself.
Wonderful reply that Hunter, many thanks. I too have PV diagnosed nearly 2 years ago. Am on weekly Interferon injections.
I struggle with a lot of the terminology associated with the disease but your post has been most informative.
Blonde25 best of luck on the PV journey.
It took me time to get my head around it when 1st diagnosed and the initial frequent venesections were daunting but my health is much better now.
I don't suffer the nausea/loss of appetite now 25 weeks into the Interferon injections but you may find it will take a few weeks to adjust to the side effects.
Hi Blonde25 I was diagnosed with PV in December 2022 and my haematocrit was 79%. I had venesections twice daily for a week whilst in hospital and twice weekly for the past 4 weeks. My hct was 0.44 yesterday, so that’s a massive relief. I think they’ve had all my blood! Good luck with your journey.
Me too. Blood test showed platelets in 500’s in 2015 but not picked up by Gp. Diagnosed 2019 with routine blood test. Went privately like you to be fast tracked but then went back to nhs who have been very good in my experience. Started peg march 21 at 45 mcg weekly and hardly noticed it. A month later went to 65mcg and haven’t looked back since. Peg took a while to kick in for me. For some it reacts quickly but be patient if it is slow. It will work its magic eventually, although it helps if you keep it in the fridge at the correct temperature. For months I kept it in the bottom where I now realise fridges are colder and after investing in a decent fridge thermometer found it was 0 degrees. Moved it onto middle shelf where it is 5 degrees and figures started to come down on blood tests. Good luck and feel free to ask any questions. We are all here to help
Thank you . It's nice to receive support from people on the same journey ☺️ I will probably need to make sure the temperature of my fridge is at the correct temperature also
Good luck with your treatment now it's working it's magic
I was diagnosed in fall of 22 and started Pegasys in January. Six doses of 90 mcg in and my numbers are improving hematocrit at 42 plates down almost 200 to 720. It effects people differently, but the only noticeable side effect so far is a slightly pink area on my stomach around the injection site; so nothing. Also thanks to many of you I am not wasting half the vial! Cutting the cost in half is a relief; unfortunately no 90 mcg vials in America
Look up Pharma& you may qualify for assistance from a foundation that supports Pegasys treatment
Are all of you taking low dose aspirin as well? Im using as a blood thinner to help prevent clots, per doctor.
hello Blonde25, welcome to our forum, it can be very daunting when you are newly diagnosed, there is such a lot to try and understand and come to terms with. I would suggest that you have a look at the information on our website mpvoice.org.uk which I am sure will answer many of your questions. We are all here to help and support you, best wishes, Maz
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