Peginterferon approved!

[Tmg59]

Hi everyone,

So just an update...... Peginterferon has been approved (PV Jak2+) and I start tomorrow! Only had letter and phone call today re appointment tomorrow morning so not much time to worry, I suppose. Peg is what I wanted to go on, so pleased it's been approved but obviously still very anxious about starting tomorrow. I just wanted to thank everyone who has helped me through firstly deciding on PEG and then reassuring me when I thought it might be HU I was going on. I am trying to be positive, especially after hearing your comments and experiences. I'll keep you updated on my next journey on the PV road.

Thank you all again

Regards

Tina x

[Manouche]

Congratulations ! You’ve definitely made the right move . The first injection is a bit stressful but surprisingly totally painless and the side-effects often anecdotal or non-existent. Besides, I didn’t have a single venesection since I started Pegasys 12 months ago.

[Tmg59 in reply to Manouche]

Hi Manouche

Thank you. I was actually just discussing with my hubby about whether or not I would still need venesection. Obviously I know we all react different, but good to hear you haven't required any. Thank you again for all your comments. Like I've said many times, it's so helpful hearing everyone's experiences.

Best wishes

Tina x

[shiftzz]

I'm really pleased for you, in my case Pega took over 2 years to have any effect,,, I hope it works for you,

[Mazcd Partner MPNVoice]

Good luck Tina, hope it all goes ok today. Maz x

[Tmg59 in reply to Mazcd]

Thanks Maz

All done and back home now so 🤞. Thanks for all the support, I can't tell you how much hearing everyones comments has helped.

Best wishes

Tina x

[Infowarrior6]

That’s great news, Tina. Me too! I start today. I’ve never been so chuffed to get an injection 😃. I’m ET MPL, and turned 60 this year.

[Tmg59 in reply to Infowarrior6]

Hi there,

Well, first injection done and all good at moment. Hope your injection goes well 🤞. Would love to hear how you get on too. I'm going back next week for them to do another injection before I do it myself.

Best wishes and good luck

Tina x

[Infowarrior6 in reply to Tmg59]

Mine went okay. Surprisingly I was right in the deep end injecting myself! When I called at the pharmacy to collect the medication before seeing the nurse, they couldn’t find it for a while- thought I had got away with it😂. Yes, we must compare notes as we go along. Take care Tina. It all seems a bit surreal to me this injecting lark!

Val

x

[Tmg59 in reply to Infowarrior6]

Hi Val

Glad to hear it went well and you did injection, wow! When I go back next week, I'm going to ask if I can do injection while they watch lol. To be honest I have felt fine apart from some tingling in hands and wrists early evening and then I felt I was getting anxious, so I just pottered around house for half hour and all seemed to settle. Had a good nights sleep, apart from getting up a few times due to drinking my body weight in water! 😄, and so far this morning all ok 🤞 Hope you are feeling ok too. Like you say, it's all very surreal. Keep in touch.

Take care

Tina x

[Infowarrior6 in reply to Tmg59]

Hi Tina. I meant to speak to you before now. Just to add I did my first injection myself because I just went with the flow of the nurse! I would have done it the same way as you if I’d been given the choice. I thought she was going to show me the first time but she gave me detailed instructions as I performed (!) instead. It was fine. Well, I felt a bit fluey Friday evening but I’d taken paracetamols as advised. Saturday morning I just felt completely normal, so I’m happy for now. Val x

[Tmg59 in reply to Infowarrior6]

Hi Val

Glad to hear you have felt ok .......let's hope we both continue to do so, altho I do realise it was first injection and very early days, so 🤞.

Take care and keep me updated on your progress if that's ok

Tina x

[Aneliv9 in reply to Infowarrior6]

You have ET and you have been prescribed peg? May i ask you if your doctor made a comment about potential molecular responses?

Thank you very much

[Infowarrior6 in reply to Aneliv9]

I have read a couple of articles on this, but no discussion with my doctor took place.

[EPguy in reply to Infowarrior6]

I see this old post. How is the PEG going with your ET MPL?

[hunter5582]

Glad to hear you will follow your preferred course of treatment. Great job advocating for yourself. Do please let us know how things go.

[Tmg59 in reply to hunter5582]

Thank you Hunter. Yes, so pleased to get PEG, fingers crossed it suits me now 🤞. Will definitely keep you updated.

Best wishes

Tina x

[SoledadBarcelona]

I am happier to know you have the citorreduction you want. Happy trip!

Hope your injection goes well.

[Tmg59 in reply to SoledadBarcelona]

Thank you. Injection done this morning so fingers crossed 🤞. Just trying to stay positive and busy to take my mind off it!

Best wishes

Tina

[conno61]

You're lucky. Not everyone has the chance. It's a postcode lottery as to eligibility for peg, not a lot realise that.

[Tmg59 in reply to conno61]

Hi there. Yes, realise I am lucky to have been accepted although consultant did inform me that PEG is going into short supply, so might be a different scenario in the future. I just hope and pray that if I tolerate it well that they will consider leaving me on it 🤞. Time will tell.

Best wishes

Ti na x

[Ellafea]

Wooo!! The pegesys interferon injections work great for me. I'm 27, was diagnosed at the start of this year, I take aspirin daily and now barely have any venesections because of these injections. I have minimal side effects , but I do sometimes get tinnitus and occasionally struggle to sleep. But it is a very good option to go on these injections, ask your doctor!