MATEs FORUM

Good morning to you all

Thanks to Steve, I’ve finally managed to join the forum and I’m very pleased to be here.

I was diagnosed with ET JAK2 early last year and was on Hydrea for 6 months. I stopped due to being too you comfortable with the side effects.

I began on Pegasys in June this year. I’m very happy to say thehe side effects are minimal in comparison to Hydrea

On my visit this week to my haematologist she was very happy to say my platelets are now in the normal range and my liver and kidneys are now happy. I have been on a low dose of 45mcg weekly till now. Dr Cleary has now asked me to try this same low dose every 10 days and I’ll see her in 8 weeks. Then we will decide to remain on that or if I need to return to weekly doses.

I was just wondering if anyone here could advise me on the following -

I was just wondering about my injection last night. I had a different result from my past 8 (?) injections.

When injecting I saw blood enter the syringe. I wasn’t sure why tho I continued to inject.
I slept fine, no worries.

Today I haven’t felt so good, I’m light headed and off balance. I spent the morning resting. I have a good sized purple bruise where I injected.

I wasn’t too bothered but googled to see what I did wrong. In a couple of places I read that if blood enters the syringe, then withdraw and discard the syringe and proceed with a new one.

Mmm I didn’t do that. Is that a problem? I’m thinking it isn’t tho I thought I’d best check so I know for the future.

The past 3 weeks I’ve felt very good without side effects so I was surprised today I haven’t been tho I know that could be part and parcel of the whole MPN thing …. maybe

Anyway, thanks for listening. I see my GP this morning for other things tho I will ask her too.

Best wishes and enjoy your day

Hi & good morning Sharon...

So glad that you've managed to find us and to make your first Post too...

As mentioned when I spoke with you last, I'd definitely be running this injecting issues past your GP and see what they have to say... However, hopefully some other members of our little MPN family will be along shortly and chime in with their own experiences too...

At anytime, if I can assist in anyway... please feel free to call upon me, and if you're available try to make it along to our next Six (6) Weekly CAFE CATCHUP virtual meeting. I always Post our Next Meetings details onto the FORUM. Here's the Link for the next on SUNDAY SEPTEMBER 8:

viewtopic.php?t=2909

Hope to speak with you again soon Sharon...

Best wishes & Welcome to MATES

Steve
MPN-MATE RF Admin

Hi Sharon,
Welcome to the forum and hopefully we shall meet you on our next Coffee Catchup on Sept 8th.

I too started off with ET, Jak 2 many years ago in 2005. I have taken several different drugs over the years including Peg. I did quite well without too many side effects until the drug stopped being effective.
I did not have the problem you have mentioned but used to get lumps under the skin sometimes like a hernia. My doc seemed unconcerned but I did check with her that this was not a problem. I think you should certainly ask your doc about the problem you are having.
I am now on Ruxolitinib as my ET progressed to MF last year but I have had many years leading a reasonably normal life.
I do hope you can continue with peg. I thought it was great. Much preferred the once a week injection to the daily pill popping!!

Best wishes,
Kate

Thank you, Kate

I will try to get to the Coffee Catch Up on the 8th

I’m sorry to hear you have progressed to MF
My haematologist said progression is highly unlikely tho I have read online that there is quite a lot of it

I do hope for a reasonably uneventful future

Best wishes and I look forward to meeting you over a coffee

Hi Sharon

My name is Leon 61 with ET CALR

Diagnosed 2017 and was on Hydrea up to 2023

2023 started Pegasys on 90 then 135mcg weekly and after changing to Dr Forsyth am now on 64.5mcg fortnightly

I have never had blood in syringe, but did experience some issues like blood drop coming up on skin and pink area at injection site (especially after hot shower)

What I noticed and was advised to do as am newbie at piercing myself

Take syringe out of ridge (i usually take it out for 30-60 min pre injection to make it room temperature

Prep required dosage and remove air bubble while doing it

Use alcohol wipe

Pinch side of injection and inject at 45 degrees with some speed (I find if am slow , there will be blood on skin)

Push plunger , inject and remove syringe at same angle

All of the above should ease discomfort, but there is no guarantee as I still have some blood on skin occasionally

I did read somewhere that if you do have blood in syringe you have to stop , discard and start new syringe injection

Hope all of the above helps, but as I said I have never experienced blood in syringe and you should check with doctor

Hope it helps and hope to see you at cafe meet

Regards

Leon