Expectations

My Granddaughter Ellie will be one on 27th February,
I felt so good last week that I spent hours and hours on the computer
 puting together an Apple iphoto book as a record of her first year
 ...this is the picture I used on the front cover

This past week has been a good one following my Enbrel shot last Thursday. I woke up on Friday morning with no stiffness, no fatigue and very little pain.  The trouble is I don’t know whether to shout out loud ‘hooray’ or whether this is just coincidence..always erring on the side of caution me..The week progressed much the same and life has improved I’ve found myself doing more and more without thinking about it ..always a sure sign that your feeling better.  By Wednesday I had a slight twinges in my hands and wrists and was actually looking forward to my 2^nd shot.  My meds this week had been 1 x 50mg Enbrel shot and 3mg Prednislone a day.  No painkillers.

Thursday morning at 8am I had a phone call from the Rheumatoid Secretary to say the clinical nurse was off sick so my appointment to supervise me administering my 2^nd shot was cancelled…..just like that!  Disbelief, panic, desperation all set in…I must have my shot..absolutely must…I was assured that waiting a few days would not affect the efficacy of the meds.  This however was not the point to me I had made this conscious decision to start Enbrel and psyched myself up to do the shot and needed to do it that day.  I phoned by GP surgery in a blind panic and one of the nurses saved the day, she squeezed me in after surgery.  I duly arrived at 12noon expecting her to give me the shot but she handed me the click pen with a ‘come on now, you can do it’.  Actually it was ok …the end of the click pen pushed in far easier than I thought and the hardest part was pushing the button..deep breath…yes it stung …but 10 seconds, that’s all..worth it if it works.  As of today I still have some slight pain in wrists …but not enough to make me reach for the ibuprofen.


That brings me on to the next part of this post…expectations.  What are my expectations and are they realistic.  Everyone seems to have a different idea on whether a med is working or whether they are in remission, by that I mean clinical remission.  

A recent article in Arthritis today  gives the following criteria:  http://www.arthritistoday.org/news/rheumatoid-arthritis-remission115.php

One definition says to be considered in remission, patients need to meet four goals:

1. One or less swollen joints

2. One or less tender joints

3. An assessment by the patient that on a zero-to-10 scale, the arthritis activity is one or less

4. A blood test showing little or no inflammation in their levels of C-reactive protein, a key biomarker of inflammation

Whilst the American college of rheumatology list the following:

http://arthritis.about.com/od/arthqa/f/remission.htm

The American College of Rheumatology (ARC) classification criteria for determining clinical remission include:

1. morning stiffness less than or equal to 15 minutes

2. no fatigue

3. no joint pain

4. no joint tenderness or pain on motion

5. no soft tissue swelling in joints or tendon sheaths

6. erythrocyte sedimentation rate less than or equal to 30 in females and 20 in males

My expectations are high...my goal is remission, maybe that is unrealistic but I would like to be able to live my life without constantly being reminded by pain, stiffness and fatigue that I have this illness.  However in reality I have had RA for 23 years and of course have some joint damage, my right wrist is partially fused and my left is trying to join the party, my metatarsals in my feet are damaged and so I often have some foot pain.  Now, again looking at me I use my hands perfectly well and walk just fine at a brisk pace, unless of course I'm in a flare, to the casual observer I'm fine. But my point is that with this amount of joint damage I am not likely to meet either of the above criteria to say I'm in clinical remission.  But does that mean I wont be? Does that mean that any one with joint damage cannot achieve clinical remission?  And then again, should I lower my expectations to avoid disappointment if this drug does not live up to the hype?  Dont get me wrong the most important outcome is that I feel well but somehow by joining the remission club I would feel like I'd won.

Now for me if in 3 months time I still have pain and swelling on Enbrel I would consider it was not working.  Would I want to add another highly toxic drug to make a cocktail....no....I dont think I would, maybe I'm not brave enough, I would prefer to try another in the hope that I could achieve some sort of remission on monotherapy.  Surely double the toxicity..double the risk.  I may be totally wrong on this, this view is just my own and that may well change as I tread the boilogic path, who knows.  I know that the general concensus is that Anti TNF therapy works best in conjunction with Methotrexate but for me that is just a pill too far.  I know many people reading this will be on combination therapy and I am not saying your choices are wrong...you made them for your own reasons dictated by your own health and disease activity and therefore they are the right choices for you in your bid to beat this debilitating illness.  I have been afraid of every single medication I have been prescribed for this illness, justified I feel by my reaction to sulfasalazine,  and I know that when you get to the point that the pain is just too much to bear in reality you will try anything.....

Please, please, please leave your comments, tell me and others what you think and what your experiences are it is only by sharing our own thoughts and stories that we will all learn and become educated enough to fight our own battle against RA.