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Monday, July 25, 2011

TNF again and again and again.....


     As I enter into the new medicine phase once again, I cannot help but ask myself if staying in the same "family" of medications makes sense?  I have had a really difficult time finding any conclusive research that shows the efficacy differences between those using TNF (Tumor Necrosis Factor) inhibitors once or multiple times.  I finally found one study and the difference seemed fairly significant to me.  It showed that the rate improvement of symptoms (and this is defined by specific criteria) was 35% for those using TNF inhibitors more than once versus 55% for those using it for the first time.
     Just to refresh and educate, TNF inhibitors are in a class of DMARDS for RA called Biologics (they are made sythetically).  So what are TNF's and how does this anti-TNF work?  TNF is a cytokine (chemical messenger) in the body that plays a role in inflammation and tissue destruction in diseases like RA but is also important for normal function of the immune system.  
       Blocking TNF with biologically derived drugs like those pictured above, called TNF inhibitors, has proven to ease symptoms, inhibit joint destruction in RA and halt the progression of the disease.  I have tried three of the ones in the top photo and now have just started on Simponi, the newest one to enter the field.  Delivery for this group of drugs is either injection or infusion depending on the particular medication.  In total I have had 4 1/2 years of great success with Humira, no succes with Enbrel, and mild success with Remicade for 2 1/2 years.  So now I find myself starting yet another TNF inhibitor and wondering if this makes sense.  To be fair, there are some slight chemical differences in the various medications (not being a chemist I have no desire to explore this any further!) that are in this group but I am not sure if this is still just "the same old story" being re-told.
     That said, I really want to embrace this new choice and so I am trying to keep positive thoughts while suppressing my urge to find reasons why this may not work.
     I know how important mental attitude is to your health and so I am doing my very best to get with the program and accept Simponi as the solution to my RA!  Yet, time and again, the little doubts creep in....asking me what if?  what if is doesn't work?  Should I really be pursing the same type of medication?  Am I wasting valuable time during which my joints are deteriorating?  Is it time for a change?
     I think everyone with RA faces these questions on nearly a daily basis thanks to the very nature of the disease...that is its unpredictability.  To put it simply...we just don't know.  We don't know how we are going to feel when we get up in the morning.  We don't know how we will feel while we are exercising or trying to.  We don't know how the day will go and if we will be able to do what we planned.  We don't know which joints (the average adult has approx. 230) will decide to be painful and inflamed on any given day or how badly they will hurt.  We surely don't know if a medication will work since there are so many out there and often in combination with 2 or 3 or 4 other medications.  There are almost as many combination and dosage differences among RA patients as there are folks that have the disease.  That may be why there are so few studies that definitively declare if it makes sense to do a TNF again and again and again..... 
     BUT....if there is one thing that living with RA has taught me (actually there are many) it is this.  You simply have to accept that this disease IS unpredictable and understand that it is just one more challenge to be handled.
     This need not prevent you from having a joy filled, satisfying and happy life.  You simply need to adjust to the ever changing nature of RA.  Which brings me back to my decision to try Simponi, yet another TNF inhibitor.  I guess when it was all said and done I decided to give it a shot (no pun intended) since a 35% effectiveness rate might not be so bad if it works, right?  The real key here is that I decided!  I consulted with my Rheumatoligist, my family, etc. but in the end I made the final choice.  I was responsible.  Just the way I like it.
    
     Nan

4 comments:

deb aka murphthesurf said...

Are you aware that today it was released that Simponi WAS NOT approved for use with severe to moderate RA? Just thought I would give you a heads up for two reasons: you should be asking why weren't they approved and will your insurance now cover this med since it is not an FDA approved use. Sorry.

Nan said...

I did see that but not sure if it means that those of us approved to use it will have to stop...I have a call into my doctor. I have approval through June of 2012 so maybe it will hold up till then and the decision will be reversed....fingers crossed. Nan

Cathy said...

Nan, it seems like finally making the decision brings some peace. I hope things work out well. You have such a positive outlook on life that it seems like only good will come to you no matter what. :)

Jan said...

Nan, this is a month late, but I found your post fortuitously tonight. I am on the brink of starting a TNF Blocker and don't know which one to try. It is supposedly my choice, but what to do? Humira, Enbrel or Remicade?