After several unsuccessful treatments, Krystyna tried interferon.
I was diagnosed with polycythaemia rubra vera in Jan 2002.
Prior to diagnosis I had felt extremely tired and fell into deep sleeps for at least couple of hours in the day. My face was very flushed and I had frequent headaches. I put this down to end of term reports, Christmas activities, and hormones. Also I’d had frequent bouts of thrombophlebitis. I’d had varicose vein problems and with being on my feet all day. How easy it is to miss the whole picture.
Routine blood tests done in January 2002 revealed that I had a red cell/Hb count of 20. I was admitted to hospital for about week for venesections and prescribed warfarin. On return home at the end of the week, I was re-admitted at weekend with a pulmonary embolism. This resulted in a long hospital stay in Coronary Care and on the Ward. Investigations and bone marrow sample concluded that the primary cause was polycythaemia rubra vera.
Venesections, initially frequent and less so over time, controlled the PCV and red cell count. Over the years I continued to have problems with cellulitis – red, inflamed and swollen legs.
In the summer of 2008 my platelet count became very erratic. The count was monitored and continued to rise steeply. A further bone marrow biopsy revealed the JAK2 mutation. In November of 2008 I began a course of hydroxycarbamide. I had very few side effects with this drug. Unfortunately, though, my platelet count plummeted and it became very difficult to pinpoint a suitable dosage to give some acceptable platelet range. My count was either very high or very low no matter how the drug was adjusted.
I then began a course of anagrelide, but unfortunately the outcome was as with the hydroxycarbamide. The side effects I experienced with anagrelide were as predicted – extreme tiredness and severe headache. Over time they did reduce to be more, though not always, manageable. I gave hydroxycarbamide one more chance, but again it did not do the trick.
During this period, I also developed clots in my arm, calf and inner thigh. I was treated as an in-patient with injections of heparin and for the thigh clot and vascular surgery to tie off the vein in the groin.
I began a course of pegylated interferon just over one year ago, at a dose of 90 mic. per week, coupled at the start with hydroxycarbamide. My platelet count was still over 1000, so the dose of pegylated interferon was increased to 135 mic. per week and hydroxycarbamide was omitted at the time. My platelets dropped to the high 600s – I was told to expect that my normal range would not be the same as everyone else’s.
Almost one year on, and I continue to self-inject pegylated interferon at a dose of 135 mics. per week, and it has much stabilized my platelet count. Excellent!
I was given a good piece of advice for injecting in the R/L flank above the waist: use a mirror. Once you get used to this, it just becomes routine. Another useful tip is if you are travelling is to buy a “Neoprene Cool Pouch”. This pouch contains gel crystals that swell and chill when soaked in cold water. The pouch comes in a range of sizes. I ordered mine from Boots Pharmacy.
It does take time for your body to adjust to pegylated interferon. I find if I inject the medication in the late evening, take some paracetamol and have an early night, it avoids the worst.
The initial side effects that I experienced were severe headaches, aches in the limbs, some dizziness, and sweats that were worst at night. I also felt exhaustio. When I reached mid-day I had to sleep. These side effects were at their worst for a couple of days after the injection, but could also sneak up on me again in the week before the next dose. Although sometimes I can go through a blip, all these effects are now far less significant than when I first began treatment. I feel a lack of appetite and off my food sometimes, but I find my appetite comes back with enthusiasm pretty quickly. Other problems that I’ve experienced have been lack of ability to concentrate and forgetfulness.
At night, I have leg muscle cramps that come and go and I still can have night sweats.
Dryness can be another problem, and I sometimes I have a pain in my eyes. My eyes can be very dry, as can be the corners of my mouth. I try to drink plenty throughout the day, eat juicy fruits and I use Visco Tears to hydrate my eyes. I find that these have been very good.
My skin can be very dry and itchy too. I use E45 body wash or Dove Sensitive Cleansing Bar and use Emulsifying Ointment on my skin. I find the layer of Emulsifying Ointment acts a barrier to any additives in any perfumed lotions if I want to use them.
I do have joint pain/inflammation in my knees, but this could well be down to just arthritis.
I am now retired, so obviously cannot compare myself to someone who is in full-time employment. However, I do work casually as an exam invigilator and have the demands of other responsibilities within a small business. I have learnt to pace my days better and not get over-enthusiastic! (Not always as good as I should be at doing this.)
There is always a concern of depression and related problems when taking interferon. I didn’t experience these side effects, which was a relief, as there was a time after the death of my parents, both within a short time of each other, when I experienced depression.
To be honest, if I look at the place I was in eighteen months ago, with ward visits three times a week ward visits, in-patient care, a platelet count that looked like an earthquake reading, blood clots, and ineffective treatments, now everything is so much better!
Krystyna Chilton. May 2010
One year on, I'm injecting interferon myself and it has stabilized my platelet count. Excellent!