Starting interferon soon - can anyone share their experiences please?

I am now officially part of the MAJIC trial but was allocated best available therapy rather than ruxolitinib. However, because I am suffering horrendous mouth ulcers while taking hydroxycarbamide, I am going to be taking interferon as from 14th February.

I have been given some information by the hospital and am going back on 14th February to be shown how to use and store it. I have done some reading and understand that the side-effects can be quite difficult to cope with and I was wondering if anyone would be willing to share their experiences with interferon?

I would be particularly interested to know whether it did impact on your ability to drive and, if yes, how long was this a problem for? I'm also interested to know what impact it had on your day-to-day lives and how bad the post injection 'flu like symptoms' really are?

I am not really looking forward to learning to inject myself but am sure I will be able to cope - I've injected loads sheep and cattle over the years with no problems at all!

I have asked for an injection pen because my main concern is that I might inflict pain on myself by not pulling the needle out straight!

Does anyone else use a 'pen' and, if so, how do you get on with it?

Really, I'm interested in any information about interferon that anyone is willing to share!

Thanks in advance,

Jo

13 Replies

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  • I was on Interferon 2005 - 2006 and can relate to your concerns.

    Injecting is scary at first but after your first couple of times you'll hardly even think about it. Even though I had been shown how to do it on an orange it took quite a lot of psyching myself up before I was able. I always took it before I went to bed, that way I could sleep through any mild flu like symptoms which only occurred the first dose. That said I was on the smallest dose - 45mu if I remember correctly. The higher the dose the more likely you will have side effects. To avoid bruising I always injected in three specific areas of the body which I alternated, my belly, the top front/side of my leg or my bottom.

    Like all MPN medications some people side effects vary but in my case Interferon had a massive impact on my quality of life. I had particular problems with fatigue, cognitive issues (foggy brain, poor concentration) but the worst of all was a creeping, slow and insidious depression. I would recommend you record a daily diary of how you feel as I didn't actually realise I was depressed until it was suggested by friends and family. I was able to drive but obviously not for as long or as far as I used to.

    My blood count was well controlled but I did have issues with a depressed White Blood Count and my Liver. Apparently this is quite common with IFN.

    It's important to note that even though my experience with IFN was less than positive many people cope fine on the drug with minimal issues.

    Good luck and keep us posted.

  • Hi, I'm still on interferon for ET. I took it for several years after struggling with HU and AG. Yes it does impact on other lines, so it was a balancing game between keeping the white cell count within normal range and the platelets under control. I had a break of 26 months as it controlled the platelet count so well that I could get away without injecting. Now the couint is creeping up again, I started again a couple of weeks ago.

    The first injection, yes within 6 hours I had flu symptoms, shivers, temperature, headache, but slept this off overnight with support of paracetamol. Never happened again. And no reaction when restarting. Maybe I feel more tired, but then I have diabetes which can cause fatigue and MPNs can in their own right. Depression, no more than the ups and downs of daily life, and I'm coping with recent widowhood, so surely would have had a problem if depression on INF was inevitable.

    Injecting, easy. Prefilled syringe which you turn to issue the right dose. Swab and disposable needle. Easier than digging out a splinter or plucking eyebrows! Rare to sting or catch a tiny capillary. It takes a couple of minutes for the whole process.

    I had a few liver issues already, probably due to diabetes, but INF had no impact nor has my hypothyroidism got worse.

    My advice would be to relax and keep an open mind. If you worry about problems/side effects, then the mind will be halfway there with them before you start. Be prepared for a reaction the first time, maybe. I inject in the evening so any effect is slept off, but I just carry on life as normal.

    My biggest regret with using INF, that I didn't have it prescribed when I was first diagnosed.

    Best wishes

  • Hi there. I've been on interferon for 2 years. The first injection made me feel awful with flu like symptoms but I haven't had problems since. I do get the occasional night of hot sweats/ shivers but that doesn't happen very often at all.

    My best advice is to take it before you go to bed so you sleep through the side effects. The pens are really easy and no hassle at all. My only gripe is the little red marks you get round the injection site which aren't great from a cosmetic point of view but small price to pay.

    My bloods have been brilliant since taking interferon and its now just part of my daily routine.

    I hope this helps. Good luck x

  • If its the Majic trial it will be Pegasys presumably as opposed to regular Inf. For most the sides if any are less with Pegasys, also you will probably start on the low dose 45mcg so you may not have flu symptons, if you get flu symptoms they can stay for a month and my Peg expert doc recommended Paracetemol 3 times a day if flu symptoms. Some people but not all get depression, I think its around 10% , some people take antidepressants even before starting Pegasys. The injecting is more in the mind than reality, the needles can be similar to the ones used by diabetics , they are very small. It can take a while to get used to Pegasys but it is the only drug on the market currently that can fo some slow or stop Progression of the disease.

  • Hi

    When Hydroxy was no longer effective for controlling my platelets I've been on interferon for almost 2 year. I was blessed that from the beginning in that I never suffered with the flu like side effects and got used to administering the injections quickly, the needles are really small. My consultant increased the dose very slowly ( over a year from recollection) and my platelets gradually reduced with my other counts staying quite stable too ( although I've always had low Hb ) However last year I suffered from all the typical symptoms of hypo- thyroidism, - low energy, rubbish hair, mood swings, eyebrow loss etc and I realised the interferon was affecting this area which I discussed with my consultant. As a result I am now on a significantly lower dose and my thyroid seems to be back in action and although my platelets are higher I feel 100% better.

    I would recommend giving it a go with a positive attitude and monitoring your symptoms. The other side effects I recall having are VERY dry skin, so get some extra moisturising cream and hair thinning which seems to have resolved but I'm careful in which products I now use and I have stopped dying/colouring it so have more grey than I'd like to admit.

    Hope you have a good and positive experience :-)

  • I was on Pegasys from 2008 - 2010 and I found the side effects far less than regular IFN.

    Personally I would recommend Pegasys way before regular IFN. I can see no reason other than cost for using IFN in preference to PEG. The side effects are far less on PEG and you only need to inject once a week instead of three times a week with IFN. The fact that it has the potential of putting your MPN into molecular remission is also a big attraction.

  • Thanks for all the input. The consultant is going to try for Pegasys but is not optimistic because the MAJIC trial is actually testing a drug called Ruxolitinib, and Pegagsys is not usually prescribed unless there are special circumstances or if you can't get on with the regular type interferon.

    I really appreciate all the input and have been talking to a coupl of people who've had to inject themselves for other reasons and they've reassured me that that element isn't too bad, so I guess it's really just managing the side-effects that I'm really concerned about.

    The consultant has suggested that I don't commit too much of my time in the first month or so but that I get out and do things spontaneously if I am feeling ok and I think that this is the message that I will give to my employers so that I am not under pressure to travel for meetings etc.

    Thanks again,

    Jo x

  • I have been on inf for 15 years. Initially 9 miu/wk now 7. Injection pen is really easy to use. I always push needle into skin slowly, that minimises any pain. If it begins to be painful I take it out and try another spot. I usually have no pain injecting this way. I do it around where my "spare tyre" is, at the side. I have not had any side effects for years. Best med for me for mpd without a doubt

  • Hope you don't mind me asking but a question for TDAVIES1 what MPN do you have? because I have PV and debating whether to change from Hydroxyicarbamide to interferon.

  • I have ET

  • I started using Interferon in Oct 2012, the first injection was a pretty bad experience for me but not the same for everyone, please don't let this put you off. For the following few weeks I of had flu like symptoms. Currently, I have days where I have mild symptoms but they are becoming less. Interferon has taken a while to settle for me but now I think I'm now on the up-road. My consultant did increase my dose in December 12, I was on 30mil 3 x a week now on 4 x a week, consultant did advise that it take around 12 weeks for the injections to settle.

    Interferon hasn't impacted on my ability to drive but I do have fatigue, at this time its too early for me to tell if/what impact it will have on my day-to-day work life.

    I didn't like injecting myself and do have phobia of needles but after about 4 weeks I didn't really think about inject myself, I'm now very proud of myself for this! I use the pen this was all I was offered, the needle is a fine and very small

    I would recommend giving it a go its better for you in the long term.

  • Hi

    I have ET and have been on Interferon for nearly 4 years. I use the pen which I find very easy to use rather than the prefilled syringe, I store it in the pen and acrtridges in the fridge and if I go away I use a cool bag. I take my dose before bed, Ihad the initial flu like aches but after that I have not had any issues. I started on 3 MIU 3 times a week (Mon, Wed, Fri) but now upto 5 MIU daily.The needle is about a 1cm long as as tdavies1 said I inject into my stomach rotating the site.

    Hope this helps, good luck

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