Interferon Alpha

[Vennie]

Hi everyone, just been put on interferonAlpha, is there anybody that can share their experiences of this drug as it seems pretty scary the side effects and trying to get round self- injecting etc...

[Mazcd Partner MPNVoice]

Hi Vennie, I am not on Interferon so can't help but have a look at this video of Alisia who uses Interferon

mpnvoice.org.uk/about-us/vi...

[Vennie in reply to Mazcd]

I have viewed the video and am greatly reassured about this new med. Thank you so much

[JSKly in reply to Mazcd]

That's a great video. I don't use a "pen" but the wee syringe is pre-filled and the needle small. I think time and practice is the key.

[Dianne-Guisborough]

Hi Vennie

I'm sorry I sent a long reply to you earlier but somehow I don't think I've posted it . I will write tomorrow as just going out but basically it was to say: try not to worry - it looks complicated when looking at the directions to self inject but after a couple of times you will become an old hand at it !

I was diagnosed with PV in October last year and started interferon alpha 4 weeks ago. Within four weeks my platelets started to come down nearly to normal limits which is fantastic ( I didn't respond to anagrelide) After 20 weeks of weekly venesections - my hematocrit has also started to behave itself and has remained stable within target range and I haven't needed a venesection for the past 3 weeks which for me is unbelievable

Regarding side effects my haematologist prescribed me paracetamol and Piriton to take an hour before I inject. Not sure whether I have just been lucky but my side effects have been really minimal. A bit headachy and a bit achy on the night and day after the injection. I take my injection on an evening hoping that I sleep through most of the side effects. I have to say though they have eased off as well as the week have passed i take it 3 times per week .

I know everyone is different but hopefully you will be fine and there is always the option of pegylated interferon which I understand you only take once every 7 to 10 days and it is not supposed to have so many side effects. My hematologist said if I am struggling with the interferon she will apply for funding for the pegylated version so this might be an option for you if you were having problems with side effects. I must charge off now so fingers crossed I post this correctly this time to me and I really hope that you'll do well on the interferon Vennie.

Happy bank holiday weekend and love to you

Dianne

XxxX

[Vennie in reply to Dianne-Guisborough]

Thanks Dianne; its day one and had the most enormous headache but the reassurances on this site reassures me.

[AndyT]

Hi Vennie - I have ET and I've been on Pegasys, which is the slow release version of interferon alpha, for 18 months now. I find the injections very easy and have had no significant side effects - just some dry skin and occasional mouth ulcers. It's brought my platelets down from over 1100 to about 300 and I now inject just once every 4 weeks.

I hope interferon works well for you - the list of side effects looks scary but as with most medication the majority of them affect very few people.

Good luck

Andy

[Vennie in reply to AndyT]

I have Et too (and jak2). Yes, I think the side effects list was very scary especially as Consultant also wrote, suicidal thoughts,; but I shall give it a try and hope I will get the jabs down to one every four weeks!

[westie71]

Hi. I've been on it for about 4 weeks. I was scared rigid of needles but because of having to inject clexane for a blood clot I was overcoming that. The needle is vey fine. Almost pain free. I've not found the side effects too bad. 2 nights of flu like chills and shivering. It made me chuckle because I knew what it was. Since then, a bit of itchiness 2 days later at the injection site. That's about it. My platelets have already come down from 975 down to 495 which I'm pleased about. No depression. It's been a real plus to see positive movement (but in a negative way for those bad boy platelets) on the bloods. You'll be fine! Good luck. 😬👍🏻

[Vennie in reply to westie71]

Hi Westie71, thank you for replying to me and to share your experience with me. It makes me feel less vulnerable.

[Susana7]

Hi Vennie, I have been taking Pegasys (the slow release form of interferon) for 19 months with excellent results and very few side-effects. Pegasys is injected just once a week. If you are worried about self-injecting like I was I suggest you apply EMLA cream (a topical anaesthetic, bought over the counter) on the injection site 30 min before the injection and it makes it 100% pain free! I also recommend injecting at night and taking paracetamol, particularly the first few times. The first time is the worst, I did experience a headache, now I have no immediate side effects at all. Good luck!

[Vennie in reply to Susana7]

Thank you Susana, the cream seems a good idea, and I have decided to jab at night so any ill effects might be minimised. I am really appreciating all the kind replies I have had , everyone has been so reassurring.

[Lab-Rat]

Hi Vennie, I have ET JAK2+. I am on Pegasys 90 ug/week for three weeks now. Andy was a great help to me giving advice prior to my starting my Peg journey. Platelets down from over 1400 to 900. I work full time so inject Saturday evenings as I do feel a bit rough (like a really bad hang over!) the next day (but this is getting better) so I take it easy on the Sunday. Come Monday I am fine. I do get an injection site reaction, the first two sites are only now starting to fade. The 3rd jab I did on thigh, no difference. I was on hydroxycarbamate but became allergic to it. I was pleasantly surprised that Pegasys is available in South Africa. Good luck to you, see if your dr can get you the pegylated version.

[Vennie in reply to Lab-Rat]

Thank you. I will discuss the pegylated version as many on this site seem to be on it so I am wondering if it is the better version.

[JSKly]

Hello Vennie, I too have just begun an interferon: Pegintron Alpha. I was worried before beginning. Some on this site made some very helpful suggestions. I hope they will post to you. I was surprised how easy it is to self-inject. I was shown the technique at the hospital and was watched while I did it. The day after I feel fragile, but I think that is due to the stress of it being new.

[Vennie in reply to JSKly]

Thank you for your reassurance

[Tpearson]

Hi Vennie

Sorry to say my experience of Interfon was not so positive, I took it for about 6 months building to 3 a week, the initial side effects were flu like symptoms which did gradually ease however over time my mood dropped & found myself in a dark place as I felt so low physically & mentally. My consultant took me off it for a 'treatment holiday', my platelets are on the rise again but I'm feeling so much better.

Everyone's experience is very different & I don't want to alarm you, however I hope you can find it beneficial to hear the other side of it.

I hope it works for you & you will get used to self injecting. It's a lot easier than the Clexane, that hurts ☹️

Take care, Theresa

[Vennie in reply to Tpearson]

Thank you Theresaforgiving me another perspective on this treatment. I am on 3 jabs a week and do worry about any depression etc... Besides this the docs have now found something in the brain on MRI and also diagnosed sensory ataxia. I lost my balance last week and I was hospitalised and platelets levels have risen sharply, hence the new treatment so feeling a little fragile.

[Malaika]

Hi. I have been on Interferon Alpha now for nearly two years. I too read the leaflet and worried about the side effects. Then I remembered someone once said read the side effects on the humble aspirin and it put it into perspective for me. So I now just put it in the bin. I take 3mu three times a week. Yes the first injection was very unpleasant but not since. I do get more fatigue the day after but then I also had terrible fatigue taking 1500 mg of Hydroxycarbamide daily. You will get used to it and the bonus is for me that my blood counts are nearly all in the "normal" range and stable.

Hope it all goes well for you. Be kind to yourself.

Malaika

[Vennie in reply to Malaika]

Thank you for your kind and helpful reply

[SharonIsHopeful]

Hi Vennie: I've been taking Pegasys (alpha interferon) for about 5 months now. I started at 90mcg for the first two doses (no side effects to report), had an accidental dose at 180mcg (the pharmacy got it wrong) and experienced pretty awful side effects (felt like my bones were splitting in two), was then on 120mcg/week for about 2 months (again, very few side effects), and am now down to a maintenance dose of 90mcg/week. My platlets have gone from 1100mill to 408 in that time. The main side effects I feel comes on 24-48 hours after I dose, and it's usually headache (particularly if I'm dehydrated to begin with) and some flu-like body aches. I do have a couple of light red splotches in the areas where I inject, but try have faded to pink over time. Beyond that I haven't experienced any depression, hair loss, or mouth ulcers (touch wood). I would say, stay plenty hydrated while on interferon. Water is always important, but especially so on this medication. I dose at night, mostly for convenience sake as I'm a nurse and can't dose in the middle of my shift. I've found that I've been able to tolerate Pegasys very well, and I feel very fortunate for that.

My hope is that my platlets will be stable enough that I can wean off weekly injections and perhaps go to every 2-3 week maintenance dose injections. We'll see.

I was also very nervous before taking it. I have found it to be no more inconvenient than taking my daily aspirin. I hope is the same for you. Good luck.

Sharon

[Vennie in reply to SharonIsHopeful]

Hello, and thank you for your comprehensive reply. I have now taken my second jab, the first awful headache, the last and since - I feel very well! I expect my platelets are now coming down. I still find the rigmarole of injecting lengthy but as you say, it will get as easy as taking my aspirin. It has also improved my balance too now that the body is is more control.

[wormwood]

I too have et jak2+.. Im on 4 injections a week 3mu each... The first one was so bad I thought I was gonna die. I thought if this is what its gonna be like I aint doing it!!! But the second and ever since not ad bad and now hardly any. Although I can feel when I need my next dose. My platelets are nearly in the normal range so im feeling better generally although I do have other health problems going on at the moment. So dont fear them... They Do a great job...... 😁

[Vennie in reply to wormwood]

Thank you. Now had 2nd jab and I am sure I am feeling the effects already!! It seems heavy dealing with the jab routine but I am sure I will just get used to it. I too, have other health concerns but strangely, I can distinquish between my ET/Jak2 and the sensory ataxia (symptoms) I am now experiencing after an incident last week in the supermarket for which I was hospitalised. They also found something in the brain which the team are looking at this week. A little worrying all this but I am positive and do keep hydrated and eat very well so must leave it to the Gods!