Friday, August 24, 2012

And Wheeeeeeeee

I took the first dose of Simponi last night.  So far no severe side effects.  Some nausea, dizziness,fatigue and the expected arthritic flare.  All these are on the box so not shocking.  Also all are what I would consider mild side effects as long as they don't last long.  I'm not sure at what point and time I would say the lingering effects would be considered long standing, but for the moment I'm not concerned or overly uncomfortable.  I did come home from work at lunch because I was mildly worried about the dizziness in that I didn't want to have a strong spell of vertigo and end up on the cement floor or head first into my desk.  I felt sitting or laying solidly on my couch was probably the safest place for me.  If this medication does work I will gladly give up a day or two of feeling generally yucky for 4 weeks of feeling generally better.  This was the case when I took Remicade. 

Me getting remicade.

Remicade is an infusion.  This means it is delivered via IV.  I would go every 4 weeks and spend 3 hours with my favorite infusion nurse.  The doctor's office had fairly comfortable recliners or cushioned rockers to "relax" in while hooked up to the drip.  With me, I usually started feeling my side effects within 20 minutes of the drip starting.  Remicade would literally take me out of commission for at least an evening.  I would be exhausted and almost instantly would have a arthritic flare.  It was worth giving up a day of my life every month to have relief with both my arthritis and psoriasis for about 25 days.  The last few days before my next infusion was due were tolerable, and knowing that relief was coming made them even more so.  Remicade also seemed to slow down the progression of my arthritis.  When I started it I had mild arthritis in my hips, lower back and left shoulder.  Not to say mild in that it didn't affect my quality of life or my functionality, but that it was not debilitating to the point it was keeping me from working or living most the time.  While I was on Remicade I had almost no psoriasis and I didn't develop any new arthritis.  The flares were greatly reduced in my pre existing arthritic joints, and I was able to have a generally active life.  Remicade worked well for me for about 4 years.  The last year I was on it the  results were shorter lived on my arthritis.  It was still working wonders for my psoriasis, but my joints were not so lucky.  The length of time I was having relief seemed to be shorter and shorter till I was getting some relief for about a week and then have aggressive flares through the other 3 weeks.  The arthritis started to find more joints as well.  That was the point that I decided that the risks were out weighing the benefits and stopped taking it.

I hope Simponi will have a similar effect.  I don't mind a little discomfort to receive a lot of relief as long as the relief outweighs the discomfort and the potential long term effects of taking biological treatments. 

I share this for anyone out there considering biologicals.  All of them are impressive medications.  Finding the right one for you can be a bit of a roller coaster ride, but if you find one that works it can be amazing to have more of your life back. 

I also wanted to mention something my mom located and informed me about.  Chronic Disease Fund offers assistance with medications, patient care, and transportation and lodging assistance in connection with disease care.  It is worth a look see for anyone having trouble financing their medications and care.  They have a list of conditions and medications they assist with and show which of those they have openings for at this time for new patients.  

Finally I leave you with some classic Gonads and Strife.  And WHEEEEEEEEEEEE......