Recently started on Interferon injections and pl... - MPN Voice
Recently started on Interferon injections and platelet count now on way down at 940. Feeling nauseous is this usual?
Very common Redheugh, you'll get a number of flu like symptoms in the first 24 hrs which normally recede pretty quickly. Taking Paracetamol can help.
Which Interferon are you on and what dose are you taking ?
How long have you been on interferon?
I've been on it for 5 weeks now and, so far, it hasn't done anything to control my platelets. They were at 690 before I started and climbed to 1575 (this included 9 days with nothing to control my platelets). They then climbed to 2245 a fortnight later and so I was on 180mcg pegasys and 1.5g per day hydroxycarbamide. By last Thursday they'd climbed to 2255 and so my hu has been increased to 3g per day (pegasys still at 180mcg) and I'm back at the hospital on Thursday.....
So far as side effects go, I have had absolutely no appetite since going back on hu but the pegasys side effects have been reasonably ok. However, nausea and even vomiting are listed as possible side effects for interferon.
Jo
Sounds like your docs are still trying to find your optimum dose Jo.
The thing about Interferon is the longer you take it the more effective and beneficial it is. It really is worth trying to stay on it for a few months before throwing in the towel. I realise for some that is easier said than done.
Some people just don't get on with the drug. I struggled for a year with side effects on regular IFN but Pegasys has been a lot better with excellent control of my counts and less side effects.
Hi Redheugh,I've been on Interferon (Roferon A) for nearly 3 years following my splenectomy. As ET says it does take some time to get the right level. I started on 3 MIU 3 times per week which went to 5 days a week, I'm now on 5 MIU daily with a side order of HU. My platelet count is currently 620.
I had flu like symptoms i.e. muscle aches when I first started so I take my inerferon at night but no longer. I still occasionally take paracetomol.
Thank you for your replies and realise that I must persevere with the interferon. I started about 5 weeks ago, on 3 MIU every other day, plus Hu and Anagrilide that I had been taken. My platelet count fell in two weeks from 550 to 60, so I was taken off everything and five days later the count recovered to 116. I then went on to 1.5 MIU of IntronA and two weeks later my count was 1160, five days later, 2200, so I was put back on to 4 capsules of Anagrilid and 3 MIU three times a week. Glad to say the blood test a week later showed a drop to 960 and I go back on Wednesday for another test. Nausea was not a problem initially, so it could be due to the ET, interferon or Anagrilide - there seems to be no pattern. I am fortunate in having a wonderful consultant who has the patience to explain everything to me and has been fantastic.
Hi redheugh
Hope you are ok - I know it's really difficult time when your doses are being juggled to match what you respond to best! As et said it does take time - I was on interferon for 3 years and had times of feeling sick and loss of appetite. Think I lost nearly a stone in weight overall but once my dose was right it got better - I was on a very high dose of 9mu every day when felt very sick! However I am now on Pegasys which I hardly get any side effects on at all now and on both these meds my platelets have come under 400 which they never did for over 8 years!! It's definitely worth persevering and great news you have such a supportive consultant to help you!!! Take care Becky
Thank you for your reply. I'm glad to say my nausea is much better and my platelet count this week is below 400 for the first time in 5 months. I have also been able to reduce my Anagrilide to 2 capsules a day. I don't seem to have too many side effects from the interferon but am only on 3mu three times a week. No guarantee that the platelets will still be down next week but am hoping!
