is anyone out there using interferon? If so, an... - MPN Voice
is anyone out there using interferon? If so, any experiences with it would be welcome to learn about
Hi, I am not using interferon at the moment but did take it whilst I was pregnant. First night I took it I was very poorly, cold shivers whilst sweating, pounding headache and violent vomiting. After that first night I was better but not 100%, each time I took it on the night I woke with a bad headache and aching limbs. I was advised to increase my dose to every other day and this seemed to work by keeping it in my system and the headaches became less frequent. Was pleased to come off it as I didnt react well to it but I was told that majority of people do get used to it so the side effects don't last that long.
Hi
I was on interferon and now just started pegulated interferon. I had a few side effects on intereeron as on a high dose to start ie 9 mega units 5 times a week - this was to get my platelets under control but did get flu like symptoms the first week and continued to get mild headaches and did lose some of my hair which at the time was very upsetting - as soon as platelets controlled and was on 3 mega units 4 times a week I felt fine and my counts were the best they have ever been - just got a bit of fatigue and brain fog from time to time but all manageable - my platelets were new 400 for the first time in 8 years and felt great so would definitely recommend giving it a go - I was on a high dose as had just had an operation where my platelets shot up so I doubt you would be put on anything like this amount - obviously you need to inject the dose yourself which takes a bit of getting used to but after about a month it was like brushing your teeth and you do get used to it - am on pegulated interferon now as lots of reports of this actually sending your mpn into remission therefore being without treatment for periods of time etc and it reverses the fibrosis in your marrow so definitely worth considering these as options
When we're you diagnosed? Have you been on any treatment before for this?
Happy to help with any queries and concerns having had over ten years of trying different medicines and various consultants
Take care
Becky
Hi Becky
Interested to learn that you have taken interferon, and now take the pegulated version. Was the transfer over easy and are the side effects (if any) similar?
I have PV and have been on interferon for approx 4.5 years. I am on a very low dose (2 x 1mu per week) which is keeping all my counts within normal levels, but I am starting to have a lot of bone pain, particularly in the legs.
Did you have any problems changing to the pegulated version i.e. cost, availability etc.
Thanks for any info you feel able to provide.
Frances
thanks for those replies. I was diagnosed with ET some 18+ years ago and have taken hydroxycarbamide all along (but busulphan instead for a couple of years). Now have progressed to MF and have NO blood counts within normal range! Plts still up a bit but red and white cells low. Considering changing from Hu to IFN but have major concerns over side effects. I have never seen any evidence to suggest that IFN can "reverse fibrosis" so, Becky, can you direct me to the science?? My understanding is that, as yet, there is nothing out there that reverses the fibrosis, only palliative treatment for the symptoms.
IFN can induce molecular remission, that is slow disease progression for different amounts of time according to the individual. It does not actually reverse fibrosis.
I was diagnosed with ET in 2003 and after being on Hydroxy and IFN at various stages I started Peg IFN in June 2008. In spring 2011 I went into molecular remission and have not taken any meds for my MPN since.
Here is one study you may find of interest.
and another relating to treatment of PV with Peg IFN.
bloodjournal.hematologylibr...
Thank you for this info. The first link didn't work for me but the second one did - and led to other interesting articles too. I still have BIG reservations about IFN but may well have to try it and see what my individual response to it is. It also causes myelosuppression so I'm not sure it will be of great benefit to me at this stage
I've been taking Interferon for over 4 years for PV.Side effects started out really badly, including ; flu symptoms , aching limbs, foggy brain, disorientation ,bad hair loss. My dose was lowered which meant more venesections, but did reduce some of the more worrying side effects. I take it twice a week now , and still get aches in my limbs, flu symptoms....but this is manageable using paracetamol.
I had most of the side effects you mention and more while on regular IFN.
Have you asked your heam to try Peg IFN ? I've found it far more tolerable than reg IFN.
Hi I've got ET and was changed to Interferon after treatment with Hydroxy was not effective. From the outset I was very fortunate in that I did not suffer any of the reported side effects of flu like symptoms etc However after 2 years and good platelet control it now appears that I may have side effects that have caused hypo thyroidism - lethargy, emotional instability, fuzzy thinking weight gain, hair loss. and generally feeling rubbish. I have also had problems with gastric/digestive issues which I never had before taking meds for MPD. At the moment my consultant has advised reducing the dose of interferon and I'm due to have a follow up check on thyroid and blood counts in 4 weeks. On the one hand I hope that the reduced dose will sort the other problems and of course I remain apprehensive as to the next step if these problems continue. I have a friend who took interferon for 8 years but had to discontinue due to the depression it induced. Obviously everyone reacts differently to the medication but I am feeling disappointed that whilst it has helped my counts it has seemingly resulted in other side effects that have really affected my quality of life. Will update when have results from check up and will check with my consultant as to whether Peg Interferon would be an alternative option.
