A very confused update

[PT99]

Hi all

I posted on here recently regarding starting medication and Interferon in particular for my PV. Just to recap, I went for my usual 3 monthly clinic in January and my usual consultant was on long term sick, so I saw her replacement who said she thought I should be on medication, which very much differed from my usual hem’s opinion of simply venesections and aspirin.

After a couple of weeks of research and deliberation, I agreed to go on Interferon and started a month ago and have been monitored by a nurse weekly since then. Initially my levels all dropped to within in normal range however this week I went to see the hem who put me the meds - she too is now on long term sick(!) and was seen by another temp consultant. He advised that firstly, my levels had shot up again to almost what they were before (I have had a heavy cold over last couple of weeks so not sure if that would’ve made a difference?) and that he thinks I should come off the Interferon as my levels are not high enough to warrant such treatment and should just go back to venesections!

After a long discussion we agreed that I’d try the Interferon for another month and see how it goes but I’m really not happy with whole situation. Just not sure what and who to believe and what is best for my health. I think going onto Interferon gave me sense of taking ‘control’ especially when the levels started to come down but now who knows!?

Has anyone else found themselves in a similar situation?

Thanks

Pete

[Paul123456]

Pete

I’m in similar sort of position, on cusp of deciding to start Peg/Inf.

What are your blood counts, your Allele Burden and have you had a BMB re stage of fibrosis?

These are the factors that are influencing my decision making process.

I’m 60% AB (a progression risk factor of unknown degree if over 50%), WBC c. 11 (over 10 - 15, depending on who you talk to, increases stroke risk) and Who Stage 1 fibrosis. Bundle that lot together and I’m swayed towards Peg despite c. 30% getting ‘bad’ side effects and only c. 25% seeing meaningful reduction in AB. I’ve read that it does generally work well on most people re reducing blood counts but HU gets a more immediate response.

I’m going to try Peg, hope I can tolerate it and that I’m in the lucky sub group that benefit from reduced AB, fibrosity and possibly slowed down progression.

[Lab-Rat in reply to Paul123456]

Hi Paul

What is AB?

[Paul123456 in reply to Lab-Rat]

It’s Allele Burden, the % of mutated JAK2+ve in your blood test. Over 50% increases progression risk but it’s just one risk factor. For example, one study I read said 20% increase in risk for ever 10% past 50%. Sounds alarming but if say progression risk is 15% over ever 10-15 year period, then that rises to 18% at 60% AB. These figures are very rough and I’m not aware of any definitive study, I suspect too many variables.

Hence not a game changer but just loads the odds a bit.

Hope that makes sense.

[Jbut]

Hiya i have essential thrombocemia been on interferon alpha for 9 years after TIA's and a bleed from the bowel,first few months my bloods were up and down,but then settled.with illness your platlets can go up,hope they settle for you i still work and live a normal life,i do get tired but am used to that now i try and rest when am off work.so sorry for you getting different doctors am lucky to have the same one for the 9 years x good luck and i hope your feeling much better soon x

[Ebot]

Time to ask for a second opinion somewhere else? (OK, I realise the irony in this - you’ve had three opinions already.) I just wonder whether there is value in getting referred - if this is feasible for you - to somewhere with an established MPN team. Opinions can differ between individual clinicians but I take some comfort in having a consensus view from my haem team.

[Susana7]

Hi Pete, I am a big fan of Pegasys interferon. I have been on it for PV with high platelets, for 2.5 years, and all my counts are now normal. It is a slow acting drug so it can take many months for you to see the full benefits of it. Your heavy cold would have certainly affected the white count for example. Coming off after just one month is really unadvisable, unless you were experiencing bad side effects. If I were you I would request to stay on interferon and adjust the dose if needed. And ask to go see an MPN specialist near you for a second opinion, if you have problems. I started at 90mcg/week and slowly reduced to the current dose of 45mcg every 2 weeks. Good luck!

Susana

[PT99 in reply to Susana7]

Thanks Susana. Sounds like we’re in a similar position with the raised platelets as well.

The side effects are noticeable but I’d like to feel I can cope with them if the drug has the desired effect. I must admit I do like the sounds of pegasys though and not having to inject as often. I’ll see how I go over the next month on the roferon a.

Thanks for your reply.

Pete

[lynnieb]

My haem told me that despite my platelets being 1400, I didn't need medication. I am confused as to why some people DO get put on meds, and some, with higher levels, don't. #what the hell??