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
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Tmg59
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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.
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.
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.
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!
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.
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
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.
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!
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