Off of Interferon!! Chemical free since 11/3/08!

It’s true, 11/3 was my last shot (and yes we are Eastsiders now, contact us for our new address).  Due to Qwest’s phone issues we don’t have internet at home so the updates have been few these days.  We met with the SCCA’s  Dr. Thompson and RN Jon Smith last week and told them about the continuing roller-coaster ride of handling the symptoms and after a good discussion we all agreed to stop the program.  It’s been 5 months into it and I had been hoping to reevaluate at 6 months and to at least stay on until the 8th month.  But the majority of the benefit of interferon happens during the first month or two and the effectiveness declines over time.  Plus your body can just reach a physical point of exhaustion with the drug. 

The blood tests combined with the severity of all the different side effects were enough to concern the doctor, luckily we make detailed lists.  It seems like I’ve been continuing to have a wider range of side effects then most patients, although none were extremely strong like some patients have.  This should be good though since people that have an easy time with interferon likely are not getting the full benefits of its effects.  Around 5-6 months (and 2 months after lowering the dose by 30%) is when things are supposed to level off and begin to be more stable and long lasting issues can start to add to the possibility of them becoming permanent.  For me with a moderate diagnosis even starting the treatment was a big step and the doctor helped me see that continuing could outweigh the benefits.  Supposedly most patients that even start usually don’t make it past six months.

It generally takes up to a month to drain the drug from your system and big changes can happen in the first few weeks as withdrawal occurs.  The first couple days were fine I could feel my body adjusting to the loss of interferon, but the daily side effects were decreasing.  A week out and I’m experiencing a reoccurrence of side effects as strong or stronger than those I had while I was doing the injections.  Hopefully these will continue to lessen in frequency and strength, at least I feel better on most days both physically and mentally.  It really feels like a grey cloud is clearing up now that the drug is clearing out.

Dealing with interferon has been rough and it would be nice to see better results from the studies concerning its use, but we’re glad we went through with it.  We’re ready to try and move on once the side effects pass, we’ll get another PET/CT scan soon at the end of the treatment to look for anything new and will be active still with our dermatologist in looking for new or changing moles and also active with dealing with the Lymphedema.  But for the meantime we are still getting settled in the new place and adjusting to life as Eastsiders.