on IFN but now platelets rising!

[Grendall]

Hi all,

So had my hospital appointment Thursday gone after a 4 week gap. On INF and this blood test showed a significant increase in my platelets, yet the Doc didn’t seem to bat an eyelid, if it wasn’t for me asking what the blood results were he wouldn’t have even said anything….I feel very confused right now.

is peg supposed to reduce platelets? What are the reasons for taking it? (Not explained from Heam doc) and no other meds offered at the time 🤔🫤

[Mostew]

Noticed you were wondering about having flu and covid jabs . What did you do ?

Maybe they affected platelets. ?

I would find another consultant who will discuss results etc.

Does your hospital have heamatology nurses. Perhaps ring them for a chat .

[Grendall in reply to Mostew]

good morning,

I have booked my vaccine and flu in for the end of the month and a Monday (take my peg Thursdays)

think I am just feeling a little fed up with it all if I’m honest, or should I say ‘the lack of care’ from professionals. I queried with them all in the beginning about MPN via an email to the nurses. Now what I have realised is they are not specialists they are heam doctors and nurses with some training on how they should deal with MPN patients, it comes across as very text book from them all. I am on my second Doctor in that department as I expressed to the nurses I wasn’t a fan of the other Doc. Apart from the line, how are you? From them, that’s about it, and I agree with Hunter in that we have to be our own advocates in this but when you are feeling low it’s the last thing you want to be doing is pushing them for help and answers

I think I just feel that there is a lack of interest on their part and my feelings keep coming and going in waves…sorry for the rant, it’s been a few low days 🫤

[Mostew in reply to Grendall]

at least it’s clear platelets not risen from jabs..

I thing dr. Couldn’t say anything definite about what will happen is because we all respond so differently. That’s why it sounded like a contradiction

Hopefully in 6 weeks you will see platelets decrease and symptoms lessen .

Rant away! It helps sometimes ,doesn’t it ,when among people who understand.

[Cakeface]

What is your current dose? And was it not increased to lower your platelets?

I'm on my 5th month of Peg, started on 45, current dose 135. Platelets are now under control but my HCT is 52 😯

I think it takes a while for Peg to settle the bloods into range

[Grendall in reply to Cakeface]

I’m on 65 and on week 7. He was a bit contradictory as in one breath when I mentioned platelets, he did say could increase but when we discussed my sid3 effects he then said could stop all together 🤷‍♀️ But we agreed that stay on this dose a little longer as my side effects are getting a little easier, so seeing him again in 6 weeks

[Cakeface in reply to Grendall]

At least you're getting f2f appointments! Since the start of covid I've seen my consultant twice, (at request as I was feeling so lousy) and I've seen the clinic nurse specialist once to show me how to administer the Peg.

Every other appointment had been via telephone.

I wonder if we'll ever get regular f2f again 😤

[Hopetohelp]

I found platelets can rise slightly when starting peg but they should soon settle down and stay level. The time period to start reducing seems to vary with different people. Mine took about a year to start coming down whereas others have had an almost immediate effect. Peg can be slow working for some of us but gets there in the end generally.

[AndyT]

Yes - interferon is supposed to lower platelets but it can take a while to be effective. How long have you been on it and at what dosage & interval between injections?

Dosage and intervals between injections can be adjusted to optimise the effects but maybe your doctor wants to wait for another test before changing anything?

[hunter5582]

Pegasys is one of the two first-line treatment options to control thrombocytosis. It i supposed to reduce platelet levels. However, PEG takes time to be effective. The doc may not be concerned about a response after 4 weeks. It is a concern that the doc has not discussed this in detail. It is important that you understand what you are taking, why you are taking it, what the indented benefit is, what the risks are, These are all key components of informed consent.

Suggest you ask detailed questions when you next meet with the hematologist. Also suggest getting your own copy of your labs so you can review and track them.

All the best.

[Exeter21]

The injection of interferon is very slow acting until correct dose found. I came off Hydroxy & a gap of 4 months on only aspirin. Just started Peg Interferon on low dose for my body to get used to it. I do not expect a quick drop like happened on Hydroxy but many side effects on that.

I also had Covid despite jabs & platelets rose because of that as they do with flu injections. My good Haemotology man explains everything properly. However had a different one at issue of Peg & nothing explained even on asking . So I read up online on our MPN website re injecting myself. Currently it seems NHS have few staff & everything has gone a bit crazy unfortunately. 👍

[Wyebird]

hi I had an immediate positive response to Peg. You must be disappointed.

You don’t say how often you inject. I started weekly then fortnightly then 10 days 11 days back to fortnightly. It’s a tweaking game.

I’m still tweaking a year after starting Peg. Let’s hope your body responds eventually.

You can take a combination ie Hydroxicarbomide and Peg.

Good luck.