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Tuesday, July 16, 2013

she loves me she loves me not

     Just like this classic paradox, many of us with RA have the same love/hate relationship with the corticosteroids we often have little choice but to take to keep our RA under control.  For many of us it is the one medication that will put a halt (or at least give some measure of relief) to a flare.  Sadly there are not a lot of options that serve this purpose.
     This is one of those areas that has not come a long way in my opinion and yet it is probably one of the most critical from the standpoint of daily living and management of RA.  
     How much more important can it get when you cannot function or sleep or enjoy life when the pain of a flare takes over your life?  Yet there seems to be little useful research out there on this and sadly and certainly no viable options or substitutes for corticosteroids from my viewpoint.
     Despite some wonderful and upcoming medications in the pipeline from a DMARD (Disease Modifying Anti-Rheumatic Drug) perspective there is nothing much to report in the NSAID (non steroidal anti inflammatory drug) category...which is where we need some help!  There has not been anything new in this arena since the Cox2 inhibitors which turned out to be a bust since their proposed benefits were not what they were purported to be.  I wonder if that has not been part of why little has been done from a research perspective.  That said, the pronounced negative side effects of long term use of corticosteroids is well known and not very pretty...   I have experience with most of them including easy bruising and rash..just one of many.
    Bone loss issues are surely another one that is very serious.  So far I have not had this problem but I suspect it is just a matter of time till it becomes one.
There are many, many more negative and serious side effects.  The list is long and can be found by doing a simple web search.  Ironically there is a place for the use of corticosteroids in the treatment of RA:
     The issue comes in when one stays on it for extended periods which often happens as a result of our own adrenal gland not being able to "start up" the natural form our bodies produce after years of using the synthetic version.  That seems to be where I am at currently.  I have had RA since 1996 and over the years, used many, many medications to treat the disease.  Once the DMARDS, now biologics for me, became less effective about 10 years ago, I was unable to completely halt the use of prenisone without suffering intense flaring and all the fun components that go with it.  

     I am currently trying to get down from 4mg to 2mg and have used the method of "rocking" between 4 and 2 with a strict schedule of alternating.  The problem is that in the interim I had some work to do that meant heavy use of my wrists and shoulders and so sadly I flared really intensely and despite suffering through three weeks I could not get it to settle down without doing a burst of prednisone to get it back under control.  Not sure if it is going to work at all at this point.  No sooner do I settle on a plan to wean off of it then something comes along to make it a daily kind...enters into it and makes the process almost impossible.  

Not sure where it will go at this point.  Thus the reason I so wish that more research was being done in this area.  I understand that DMARDS are often successfully blocking joint erosions but that does not take care of all the components of managing RA, particularly the pain and intensity of flaring joints.  I cannot and will not take any pain medications for a variety of reasons I have highlighted in past posts, so new and less harmful alternatives to corticosteroids is crucial and should be advocated for by everyone connected with arthritis.  We also need to make it clear to our physicians what we are going through so that they understand the complexity and seriousness of this issue.
     I remain hopeful despite my own frustrating experience that an alternative can be developed...I just hope it happens before the negative side effects become too serious.

1 comment:

Fred R. said...

Nice work! Where do you find the time with all you do? You are amazing.