Interferon

[Otis23]

I'm about to start interferon treatment for ET. I need to learn to inject myself. I'm a bit overwhelmed right now and concerned about side effects. Will I need time off work?

Any helpful hints on how best to manage?

[Mazcd Partner MPNVoice]

Hi Otis23, completely understand that you feel overwhelmed and I know that you will get lots of advice from people using it, but it might also help you to look at the video we have on our website, it is with Alisia who shares her experience of using Interferon and injecting herself.

mpnvoice.org.uk/about-mpns/...

Good luck with it, Maz

[Mirror368 in reply to Mazcd]

I watched the video and she appeared to be using a reusable pen. I looked on my insurance plan and it seems to only be available in vials or single use needles. Is there anything reusable?

Thank you, Eileen

[Pachena in reply to Mazcd]

Thank you so much, Maz. I am to start on this medication once we return from holidays. I found the information excellent and I feel better prepared mentally now after reading it all 👌🏻

[Hopetohelp]

I have been on peg for over 3 years. The nurse should show you how to inject. It’s really easy once you know how and the needle is really thin and small. I don’t get any nasty side effects. Some tolerate it well, others don’t . I take mine in the morning so I can drink plenty of water. Meds need to be kept between 2 and 8 degrees in the fridge so worth checking the place in your fridge is the correct temperature. I had put mine at the bottom initially and it was too cold. Please ask any questions you like. We are here to help. Ask to be started on a low dose 45mcg to let your body get used to drug slowly. Let us know how you get on and good luck

[russkatt in reply to Hopetohelp]

You keep yours in the freezer at 2 to 8 degrees? Won't that freeze it? I keep mine in the refrigerator at about 35. One of us has gotten some bum advice.

[russkatt in reply to russkatt]

I just realized you are talking Centigrade, we work in Fahrenheit scale. So it is about the same.

[hunter5582]

Not to worry. The injections are very easy. The needle is so small that i can barely feel it when I inject.

There are many videos available about how to do it but the nursing staff at the hematology office can show you how to do it. It is a good idea to do your first injection in a medically supervised setting just in case of the very rare serious immediate reaction.

When The nurse taught me she created a fake skin roll using exam gloves stuck in another exam glove. I then practiced with a saline injection. It was super easy to learn. I immediately did the self-injection, hung out for 20 minutes, then went on my merry way.

You will not need any time off work for doing the injections. Immediate reactions are rare. While there can be longer-term side effects, they are usually quite manageable. I chose to do my injections mid-week when I first started as i wanted to be sure my care team was available if needed. These days I would not care since there has never been an issue I needed immediate help with.

Wishing you success on the nest stage of your journey.

[Solyesh]

As everyone has mentioned - the injections are quite manageable - the nurse should be able to walk you through your first or as Maz suggested there are plenty of videos out there. While we are all different, it is unlikely that you would need time off for work as there usually are not immediate side effects. If you are worried perhaps try your first injection prior to the start of a weekend (or a couple of days off) to give yourself a couple of days - hopefully you will find that the injection is quite easy and hope Peg works for you!

[Otis23]

Thank you everyone, that is very reassuring. It's all the big unknown isn't it! Take care

[Mishie14]

you should just fine, Otis. There is plenty of help already shared. I will add that a year ago start of my peginterferon I chose Wednesday mid afternoon to avoid before/ after weekends when we might be traveling; and to have most of the day behind me in case there was a reaction. Didn’t happen but I was still prepared just in case. Hematology gave me a prescription for anti nausea pills and advised I should take Tylenol 325 for headache. The first several times I took the Tylenol an hour before. It seemed not needed. On the day after I did experience nausea a very few times. The pills worked and non issue. No reaction after first month. Also agree to start low dose 45 and stabilize / time to adjust before increasing if necessary. PS, if you do travel, there are insulated cooling bags online. They work just fine to safely store your medicine, including air travel. I take along prescription reference info just in case security questions what it is. They are accustomed to insulin travelers and have not questioned me. Good luck to you.

[gilded]

Hello Otis23. I've been on interferon for about 2 years. A nurse in the hospital demonstrated how to jab myself. Then as I was still not confident , the GP's nurse gave a demonstration.. I was pretty nervous to jab myself to start with as I'm rather cack handed. However, I quickly mastered it., and so will you. Just read and follow the printed instructions step by step. Take it slowly. Don't rush it. Even now, I always read the instructions before I jab myself, even though I'm pretty familiar with the procedue. Once done, it becomes second nature. Like riding a bike or driving a car. I've never experienced a problem self-jabbing..The only problem is the dog who decided to give me a big hug and dislodged everything, so that was a wasted jab.

[Anniepops112]

injections take practice but are really easy. If you are nervous, do you live with anyone who can help you? I grew up on a farm and have injected hundreds of livestock from a fairly early age. Doing yourself is a different matter tho! But with practice it gets easier and you’ll have lots of practice.

I’ve only take interferon when I was pregnant but I used to take it mid pm so I’d sleep off the worst of it. You’ll figure out what works best for you with a little trial and error. Talk to your line manager and let them know so you can adapt work load, hours, location etc as you get used to it

Best of luck

[Threestreams]

hi .. great question .. I am

Interested and following the responses as I have been told that I should start soon as well . I am feeling very good right now and thinking don’t change this winning formula for now … however have to listen to those wiser thank us/me . All the best for your journey 😊

[GardNerd in reply to Threestreams]

It is scary to start a new drug when you’re feeling well. I was in that same situation. I had PV for 16 years without treatment (other than aspirin and phlebotomy). Then I had a bone marrow biopsy that showed the disease was progressing toward MF. The interferons have the potential of modifying/slowing disease progression. I was very mad at my doctor for not suggesting I consider Pegasys. Little did I know that the disease was progressing all those years when I was feeling great. Don’t rule it out, but I do understand the desire to leave well enough alone!

[william-Indo]

Do not worry to much, IFN working slowly.You wont see any change in few days after shot.

Take the shot at night.

Inject 3 fingers from you button belly ( left or right) with 45° after clean the site with alcohol.

Wish you all the best

Cheers

[Lyndjs]

Hi Otis23 ,

I remember those feelings,you're experiencing well. I join in forum in saying, it's so much easier than you'll ever imagine.

You should do for first injection in the clinic, supervised by a haematology/ oncology nurse. I was a little nervous, especially with someone watching, however this means, you need to do it. Phew, relief once done and relief - easy.

I was advised to take paracetamol 30 mins before, which I still do.

Medication should be stored, centre of fridge but taken out 20 mins before, room temp for injecting- advised by pharmacist. If you forget, warm between your hands. I'd not been told this initially, but it does also say this un instructions.

Monday morning injection, so the team are available for any questions. I've never needed to call. Tolerance does build so weekends are often the best days too 😉

I'd say, you know the needle is going in, but not painful - a pleasant surprise. I use a small dressing after. Given to me with my Medication, by hospital.

I took time off, for my first injection but as I've been increasing dose. I no longer need this. I think many of my initial side effects came from my initial anxiety. Fatigue is something I have, with each increase, however, it improves over time.

Just my personal experience.

Drink plenty and rest, if you need to, then go again.

Please keep us posted,on your journey.

The forum are fabulous and they give the best support. I've learned so much about PV from others here. I often reference them during my consultations.

[shiftzz]

Hi

I have been on interferon for a number of years.

I have mine stored in the fridge, no issues.

I have set my phone to remind me of when to take it, usually at 8PM , it was weekly but now every 10 days. Having a reminder is really good.

I usually take the interferon out of the fridge to slightly get warmer.

I was never told how to use it, but living with a nurse is a help. The injection needle is short and very fine. I tend to inject at a slight angle, over the years I have only felt paid once, I hit a nerve and being a bloke that was as painful as giving birth (slap from nurse partner)

I try and inject in different part of my abdomen, the instructions state you must find some body fat, no problem in my case.

After a bit the process becomes very routine, and not a worry.

I have travelled a lot and take my interferon with me, I have bought an insulin case, which keeps the interferon cold.

The main thing is to not worry about it, in a few weeks you will think, “that was easy”.

I hope they gave you a sharps bin, I only put the needle in there saves space. One last tip, you need to find out how you can get rid of your full sharps bin, the GP wont take them, neither will my local pharmacy, the council will..

Good luck…

[RedCardRob in reply to shiftzz]

The local pharmacy will have contact details of the council collection service or drop off. Also the capacity of the sharps box looks a fair amount so you'll only need to do this infrequently.

[RedCardRob]

Firstly, welcome to the forum and all the helpful members that will provide you with some answers. Everyone is different physically and mentally but hopefully you'll find some correlation with your own circumstances and level of health.After the first injection I was physically tired for a day or two but soon recovered to normal so I changed from Friday pm to Saturday pm and used Sunday as a 'rest' day. I am physically active..walking the dog, Tai Chi, allotment and helping out that may account for this short period. Whether you or your occupation has similar physical activities then it might be appropriate to pre warn them of a rest day that may be required. I would not try and 'work' through it as you may feel doubly tired including mentally.

I chose to take mine just before bed time to sleep the through any immediate effects. Keep some paracetamol handy as these may ease off the initial effects..I did not need these after the third injection.

Make a note of any side effects and how long they lasted so that you can inform the care team at your next appointment.

Besides all this you should have contact numbers for your msn specialist care nurse and consultants secretary.

There are positives in everything we do...out of this..I am drinking more healthily as I bought a water filter as confirmed by my dog who drinks more too without being told to!

[DoubleF79]

Hi there. Im 44 was diagnosed just before my 40th birthday. I was on interferon for 6 months. It didn’t work for me but I can assure you, once you get over the initial fear or apprehension of injecting, you’ll be fine. It’s a weird thing to have to do for sure. I had no side effects and carried on with life as normal. Please feel free to reach out if you’d like to chat as I really do know how you feel. Take care. Fiona x

[DiveGoddess]

Good Morning Otis23,

I started Besremi at 100 mcg, slight stomach upset. Side effects range for people. Time required to go get labs done at first monthly for me. You may ask a friend or family member to inject. It is a tiny amount. They will teach you to pinch up some skin and inject into that. Best of Luck!

[Vicki_02]

Hi,

I agree with everyone here but have a few question….are you starting on roferon daily injections or going straight to Pegasys?What’s the dose and how frequent will you be injecting.

I have varied from 45 - 220mg and from daily to monthly so have had varying side effects. Mostly it’s been fine but happy to share more of you would like.

By no means do I want to worry you, overall interferon has been great for me, my platelets are under control and I am actually taking a break from medication just now😊 I will go back on interferon as and when I need to without any hesitation.

I just believe that it’s best to be prepared for all eventualities 🙂 good luck

Vicki

[Otis23 in reply to Vicki_02]

Hi,

I don't know details yet. I literally walked into my appointment and the opening statement was we are starting you on interferon your bone marrow is 60% . It's higher than we like. Come back in 2 weeks and we will get you started !

[Ovidess]

I still lay out instructions and all I'll need: alcohol swab, needle, sharps bin, etc, just in case I get nervous. The worst part for me is emptying out most of the expensive drug onto paper to throw away, such a waste, and messy too. Occasionally there is a pinch from the needle, but usually I feel just relief at getting the chore done. I think of diabetics and how often they have to inject, and feel grateful that my situation is not that constant. I did ask the oncology office for a second instructional session with a nurse, I remember. And the drug manufacturer is there to help too, as they want all to be well for you. As do we!

[Janis12]

Hi, I switched to pegasys over six months ago and the specialist nurse watched me whilst I did the first injection. I was terrified (even though I used to give injections as part of my job), my partner was with me, I made such an exhibition of myself and took ages before I could pluck up courage to 'do it', the pair of them burst out laughing!!! Once done I realised it was absolutely nothing and have not experienced any significant side effects. I am still on a low dose, 45mcg every other week and my platelet levels are reducing...win win. Good luck

[Otis23]

Thank you so much for all the comments, sounds like it should all be relatively easy. Fingers crossed it does what they hope!