Going on interferon pegasys

[Yvette49]

Hi everyone, and happy new year 💞

From next Wednesday I am having to go onto interferon pegasys injections....wish me luck. 😘😘

[Tylerdog1]

Good luck. I also started last week (have had two injections now). Was very anxious about starting and the effects/impact it would have ... so far so good 👍. Take mine ( only on 45mcg) late Saturday night with a couple of paracetamol and then try and sleep through it

[Yvette49 in reply to Tylerdog1]

Hi Tylerdog.....me too, bit anxious, ( worried about the mood swings) I have warned everybody 😁

That’s a good tip....thanks.

Good luck to you too, keep in touch 👍

[Cindy12]

Don't worry! It will be fine. I had my first injection of 90mcg Pegasys last week after five and a half years on HU. I was a bit apprehensive at first but it was much easier than I expected. My problem now is where to get rid of the used needles. I have been told to get in touch with the local council to dispose of them. They will think I am a 'junkie'! Is this what other people have to do?

New Year greetings to you all.

[Whatsisname in reply to Cindy12]

Hi Cindy. When I was put on Pegasys 4 months ago, the haematology specialist nurse gave me a small yellow sharps bin, along with some skin wipes and cotton wool balls for after the injection. The bin is only 1/4 full so far , so will probably last a year. I suggest you ask for a bin at your next clinic visit ?

[Cindy12 in reply to Whatsisname]

Thanks for that information. I will ask for a sharps bin when I go for my next appointment. I did ask at the hospital pharmacy when I received the medication but they said they didn't provide them and to ask locally!

[Tylerdog1 in reply to Cindy12]

Got mine from the hospital pharmacy at the time of collecting meds. Made the mistake after using first needle and putting it in the bin for first time of then closing the sliding lid - Doh! once closed cannot be reopened so only do this once it’s full

[Cindy12 in reply to Tylerdog1]

Thanks for the warning.

[Yvette49 in reply to Cindy12]

Hi Cindy....oh that’s good to hear, I was on HU for 3 years. You made me laugh, thanks.....I have been laughing with our son that I am now a junkie, at 70 🥴😁

[Cindy12 in reply to Yvette49]

Hi Yvette! I'm a junkie at 87!

[Bluetop in reply to Cindy12]

Hi Cindy12, Just wondered why you had switched from HU?

[Cindy12 in reply to Bluetop]

I was constantly having trouble with my teeth and gums. Each time I visited the dentist he said my gums were inflamed and put me on antibiotics. I suspected it was the result of HU.

[Bluetop in reply to Cindy12]

Oh, I hope your mouth now recovers and all goes well with the pegasys.

[Helpatlast in reply to Cindy12]

Cindy - re sharps bin you need to contact your GP surgery to refer you for sharp bin provision and collection - they send a form to your local Council who then take over to provide - the website for your local Council should have details under their bin collection service.

[Cindy12 in reply to Helpatlast]

I did enquire at GP surgery and the receptionist simply gave me the phone no. to ring at the local council.

[Yvette49 in reply to Cindy12]

Hi Cindy, how are you doing? I had my first injection of 90mcg Pegasys last weds, ( I couldn’t do it myself 🥴 so hubby did it ) i haven’t really had any side effect, but feel very depressed ☹️ But is this because I am thinking of the next injection ?

[Cindy12 in reply to Yvette49]

Hi Yvette, I had my second injection yesterday and so far I feel fine, except for the usual aches and pains! I felt a bit nervous before injecting yesterday but otherwise it went well. I must admit I took a sleeping tablet to help me get to sleep afterwards, but I have sleep problems anyway. I don't feel depressed at all as I try to get out each day otherwise I would be on my own.

[Yvette49 in reply to Cindy12]

Hi Cindy, that’s good to hear....my second one tomorrow, not sure I will do it though, but eventually I will try.

Same here we try and get out each day, not been feeling too bad today...maybe it’s just winter blues 😊

[Martini54]

Hi, I have been on 45 a week for 6 months now, no problem with mood swings. Hope you get on OK, remember to inject at least 2 inch from belly button.

[Yvette49 in reply to Martini54]

Thanks Martin 👍

[Wyebird in reply to Martini54]

I didn’t know that. That explains why one ( not for MPn )really really hurt.

[Wyebird]

Well done to all of you injecting yourselves!!! I’m a complete baby when it comes to injections. I’ve just had foot surgery. Recovery entails having stomach injections every day. I hate it. It’s a whole drama. I ice the stomach then make my husband hold the pinched skin for a few seconds so I don’t know when he is going to do it. I ice the area after too. 🥴🥴🥴

I’ve told my blood nurse I’m totally doomed should I need to go on interferon.😢

[Yvette49 in reply to Wyebird]

Oh dear, wyebird......sorry you struggle with injections, I used to, but bit better now. Good luck with your injections.

You did make me smile though 😁 thanks

Yvette

[Tylerdog1 in reply to Wyebird]

Pleased I’m not the only one 🙂. I’ve only just started - had second weekly PEG Interferon injection but have to get the wife to do it (think she enjoyed it !!). She said payback time as had gestational diabetes and had to have insulin injections.

[Yvette49 in reply to Tylerdog1]

🤣🤣

[Wyebird in reply to Tylerdog1]

I think that’s my husbands mentality too. ( he says I nag. I just totally disagree though)

[Meatloaf9]

Good luck to you. I'm sure you will do great on it, keep us informed of your progress.

[Yvette49 in reply to Meatloaf9]

Thanks, will do 👍😁

[Threelions]

You’ll be fine. It’s worked brilliantly for me. Let us know how you get on👍

[SRH55]

I’ve been on Pegasys for almost 5 years now, dose has been altered quite a bit, I did have occasional headaches the day after my injection but that has now stopped. I’m on quite a small dose 30 mcg every 4 weeks. The only problem I am having now is that my neutrophil count is dropping, (but so is my playlet count), I have to have further tests to find out why, so I have not had an injection for 6 weeks.

I get my sharps bin from the doctors - on prescription, then I phone the council to collect it.

Good luck!

[Yvette49 in reply to SRH55]

Thanks, that’s encouraging to know 😊

[Yvette49]

Hi everyone....well, had my first interferon injection....but....afraid I was a bit of a woose, I couldn’t do it to myself, so with instructions my hubby did it for me, and I was amazed, it didn’t hurt as much as I thought it would...soooo maybe next week I might be able to inject myself 🥴 ( I cant watch my blood tests either) thanks for all your support on here, appreciate it 😘💞

[Tylerdog1 in reply to Yvette49]

Pleased it went Ok 👍 - hopefully you get no subsequent side effects.

Keep us updated, as like you I’m a newbie to Interferon (on second injection) so interested in how it effects everyone and their lives and any coping strategies that are adopted to deal with it

[Yvette49 in reply to Tylerdog1]

Hi, yeh, hoping no bad side effects.

Will keep you posted.....good luck to you too 💞

[Tylerdog1 in reply to Yvette49]

Just checking how you’ve been with the Interferon injections and if you’ve had a blood test since - interested in finding out how quickly people’s conditions improve ... I’m on 5th injection and my platelets are still rising so am now having to increase weekly dose to 95.

[Yvette49 in reply to Tylerdog1]

Hi Tylerdog, ah nice to hear from you, I’m not too bad thanks....but not doing the injection myself....I am a whimp I have had my last injection yesterday. I have a blood test next Monday then my appointment at the hospital to see results. I really think I will have to be increased from 90, as I have been itching something awful, but apart from that not had any other side effects. As you say will be interesting to see at my appointment next week. I will post after 😊

Have you had any effects from your injections ?

Yvette

[Tylerdog1 in reply to Yvette49]

Hi Yvette - I also have my partner do my injections - which we find funny as I have tattoos so used to needles but cannot stick it in myself !! .... after the initial tiredness/nausea feeling am now tolerating it OK it’s just making no difference to my counts - fingers crossed the increased dosage does it’s thing. Please keep updating as I find best way to learn about our condition is from others experiences

[Yvette49 in reply to Tylerdog1]

Ah, same here, there’s something about....sticking a needle in yourself 🥴

I am sure our blood counts will get there, just have to find the correct dosage that will work...bit like when we went on Hydroxycarbomide.

😁

[Yvette49 in reply to Tylerdog1]

Hi Tylerdog, how are you doing?

I had my blood test yesterday and see haematologist tomorrow, but I am besides myself with itching 😳🥴

X

[Tylerdog1 in reply to Yvette49]

Good to hear from you and sorry to hear of the side effects you are getting with Interferon ...oddly I have always been itchy after showers/baths (resulting in having cold ones .. brrrrrr) but it’s got better since going onto Interferon, although blood counts still going upwards.

Fingers crossed you get some good news tomorrow

[Yvette49 in reply to Tylerdog1]

Thank you....

Me too, always itchy after baths and showers etc, but nothing like this. I am hoping the interferon just needs adjusting...will see tomorrow

[EleanorPV in reply to Yvette49]

Have a word with your GP. Antihistamines might help.

[Yvette49]

So, just had my four week follow up appointment with haematologist, after 4 weeks on interferon, my blood levels are beginning to come to where they should be, on the right track anyway. I mentioned about the intense itching, and she thinks it is an allergy and has given me Cetirizine. So am hopeful it will help as I see some of you are also taking it 😁👍

Thanks for all your support 💞💞

[Tylerdog1 in reply to Yvette49]

That’s good news that your blood counts are now coming down 👍