I would really appreciate some advice and benefit of your experiences.
I am just about to start on interferon, lowest dose fortnightly 45mcg. I am interested in knowing what people's experience with side effects has been and how quickly these might have settled down. Also how quickly you started to experience benefits from the treatment.. I have MF and we are starting this to alleviate spleen enlargement and perhaps help with fatigue.
I don't know why but starting this journey is a bit overwhelming, everything so far I have taken in and managed, but obviously with symptom progression and how I am feeling, plus still working full time just is feeling too much right now. I'm taking a week off to give myself a rest and some headspace but keen to learn from your insights.
Thanks in advance..
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Mrs_Average
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Also I know I got some great insight from a post a couple of months ago, and I am really reading all of the great links etc .. just wanted to reach out..
Hi there, I started interferon in January at 45 mg per week. This was alongside HU which I was weaned off. I was moved up to 90mg after 3 months. I have had very few side effects, other than a bit of fever the day after, in the beginning. I still continue to work full time but I am finding fatigue a problem. My recent bloods have shown a reduced blood count so have had another BMB. It seems that interferon is working too well, or disease is progressing.?
In answer to your question though, for me the side effects were not as alarming as I had expected, as I too was fearful .
Happy to answer any further questions. Good luck with your journey. Penny
Tip Take early evening, the side affects kick in after a few hours so then you’ll have the whole night to sleep them off. If nervous about injection place a cold pack/ ice pack on tummy for 5 mins. You won’t feel a thing. Take yourself off to bed with paracetamol
You will feel under the weather definitely the next day and maybe for 2 or3 more but you will get better as time goes on.
Every week I felt the same way but slightly less. I don’t really think it fully stopped for about 1 yr.
my first week halved my platelets thus the dose(90) was changed to two weeks.
2 yrs on I’m now on it every 25 days no side affects. Good luck
Hello Mrs Average! I’ve been on interferon 90mcg fortnightly for about 18 months. The main side effect was itchiness but this subsided after about 3 months. Learning to jab myself was surprisingly straightforward even though I’m generally all fingers and thumbs.
Hi, I started on peg about 3 months ago. I expected horrendous side effects but I’ve been mostly ok. I go to the toilet 💩 a bit more often for a couple of days after the injection. Plus sometimes in a morning I get a hot flush and sweat quite a bit, but then that fades. It brought my platelets down quickly. I’m on 45mcg weekly, have MF, age 70.
Hi I started Peg in August and on same dose as you, I put off starting it for ages as was worried about side effects but to be honest it has not been anything like I expected I do take before bed with 2 paracetamol as people advise on here and drink extra water around the days am due to and take it , so far I have never had the flu like symptoms people get either so keeping my fingers crossed on that one, injecting was pretty easy too, first few blood tests after starting was all good I did have quite a spike in HCT on last blood test and have another blood test booked on Tuesday so hoping it was just a blip, I still get aquagenic puritas but I have had this all the way through my journey and this was how I found out I had PV, I was hoping Peg may have helped but could still be too soon and it is also listed as a side effect of Peg but have read it does help the puritus for some people, its all early days for me on Peg too but just thought would let you know may not be as bad as you think Good luck
Sounds like you are going through an awful lot a the moment. No wonder it is all so overwhelming. The thought of injecting can be scary but it isn’t as bad as actually doing it. The build up is worse. The nurse showed me how to do my first injection at 10.30 in the morning and I didn’t have any side effects so I carried on taking injection in the morning and find it gives me plenty of time to drink lots of water. I hope all goes well for you. Let us know how you get on. Peg can be slow working for some like myself and can act quickly for others so hang on in there
I’m sorry to read that you’re feeling overwhelmed. It’ll all be ok.
I started peg interferon during lockdown. You do get used to doing the injections, I am speaking as an ex needle phobic! I remember that it used to be a really big thing for me to have blood taken or get an injection, so the thought of injecting myself seemed impossible. But under guidance, I did it and now it’s just a normal part of my Sunday routine! And the needles are super small.
My advice would be to drink plenty of water before and afterwards. I find that if I don’t I am very dehydrated the day after (feels like a hangover without the fun of the drinking!) oh and that’s another thing, I’d recommend no alcohol on the day you inject, as that dehydrated you too.
I saw some people advise taking paracetamol. I’ve never had the need for paracetamol on the day I do the injection. I know some people say it helps but I don’t get any symptoms that warrant taking it, so I’ve never bothered. It’s a personal thing, maybe you will need a paracetamol, you’ll have to wait and see. I can’t recall ever getting the flu like symptoms some people speak of, so maybe that varies from person to person too. I do feel a little tired and anxious on the day after but I find exercise helps with that.
I take mine on a Sunday. I’ve found that morning works better for me. Many people advise evening so that you sleep through any symptoms. You will find your pattern.
In terms of side effects (I’ve mentioned dehydration) I also find I’m a little bit anxious the day after, nothing serious, I just doubt myself. Hence why I do my injection on a Sunday morning, as I have found I’m then less anxious by work on Monday.
My advice for when you do the injection is: take it out of the fridge a little before you plan to do it. Have a nice warm bath to make your skin supple (with the added benefit that a bath may chill you out a bit!) then wipe the area with a wipe, pinch an inch and inject. It may sting a bit but it’s not that bad. Have a little plaster handy and then if you bleed you can pop it on.
I started on 45mcg, quickly got upped by haematologist to 90mcg, and then again to 180mcg, which I stayed on for a long while and when my platelets got into normal ranges he reduced me to 135mcg, which has worked for me for a few years now. I am super lucky with my care team, they saw me monthly at the start, I have their email addresses and most communication I have is via email (usually asking for more meds), plus once every three months I have a 5min telephone consultation to discuss blood tests. This all suits me fine as it’s fits in around my busy life.
I hope my reply and that of the others helps to ease your mind. You’ve got this. You can do it! Good luck!
Thank you for sharing your approach. Good to get a window on the anxiety, as I already feel some of that and guess what, am getting anxious about anxiety!LOL.. good to know that it has been mild for you..
Glad you decided to reach out about starting on Pegasys. Being apprehensive is understandable but the apprehension is often worse than the reality of taking a medication like Pegasys.
I started on 45mcg PEG weekly after the venesection-induced iron deficiency symptoms became worse than the PV symptoms. The PEG brought me to a complete hematologic response in about 8 weeks. As my iron levels restored, I began to feel better. In fact, I feel better now than I did before starting on the IFNs. In addition to improved quality of life and maintaining a hematologic response, my JAK2 allele burden reduced from 38% to 9% in 18 months of IFN treatment. I later switched to Besremi, now at 150mcg fortnightly.
Side effects from Pegasys and Besremi have been minimal. Much easier to tolerate than hydroxyurea or venesection. I experience mild lymphopenia and borderline neutropenia. I also experience some itching, which is well controlled with a daily dose of Zyrtec. There are occasional popup rashes which do not itch. I generally just ignore them and they are gone within 24 hours or so. If the rashes itch, I treat with Eucrisa ointment. My liver function tests elevated to 3X Upper Limit of Normal, which is below the cutoff of 5x ULN. My Integrative Medicine doctor recommend a Milk Thistle Extract supplement, which restored the LFTs to Within Normal Limits.
The injections are very easy to do and painless. I can barely feel them. It is a good idea to have a nurse train you and observe your first injection. After that, it is a breeze to do.
In my case, the benefits of the IFNs greatly outweigh the risks/adverse effects. My quality of life is greatly improved and I may be headed towards a molecular remission. Starting on the IFNs is one of the better decisions I have made. My only regret is that I waited as long as I did to start.
Wishing you all the best on the next stage of your journey.
started pegasys interferon 45 mcg/week about 3 months ago. Side effects for me have only been mild injection site redness for a few days. Otherwise I have felt fine and my blood numbers look better than they have since diagnosis. Injecting is easy, I have a little reminder on my phone calendar and it takes all of 5 minutes to do.
Interferon is a game changer and honestly I am surprised it is not first line therapy.
I have ET which was discovered when I had a clot which caused a heart attack at age 39 .. I have been on peg for nearly 7 years now and had a Started at 45mcg ever 7 days up to 135 after 3/4 months. Over last two years dropped to every 10 to 14 and now on every 21 days and holding good on counts. Tiredness and slight flu symptoms are the most common effect but recently developed dermatitis at the main joints knees and elbows and also scalp which is still to be determined to be related to the Peg or ET or combination. These are little things to cope with in the overall scheme of thing thou. … and hopefully it maintains me for many years to come with decent counts .. wish you the best on your journey and hope it all works out
Many have posted the same question over the years.
I posted the exact same question over 3 years ago when I started on 90mg every week. The good people here were reassuring & accurate in stating that the side effects, for the vast majority, were not as bad as sometimes anticipated.
For me it was the same. I’m now on 45mg every 4 weeks. It’s done wonders for my platelet count and is central to my ET management.
As others have already suggested.
* Imject a couple of hours before bedtime & take a paracetamol before bed.
* Keep well hydrated
For me, I feel a bit under the weather the following day but not as bad as I thought I would when I was first prescribed.
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