Saturday, January 15, 2011

My RA is not Your (or your friend's) RA

Steve, my husband, and I have been talking allot about our frustrations with this disease lately.  We both are working along our own steps toward acceptance, and it is a hard frustrating experience.

One stumbling block that we have both encountered is the fact that RA doesn't seem to follow a set list of symptoms or progress the same for every sufferer.  If you break your leg, chances are the doctor will xray it, operate on it, set it, and over the next 6-8 weeks it will heal along well known progression of steps.  The antibiotics and the pain killers are usually effective in treating the pain and infection.  In other words, it does what it says on the box!

When I was first diagnosed, (as an adult), I believed that the medicines they advertise on the TV would 'fix' this or at least make life tolerable.  After a few months of researching I began to understand that it is not quite that easy.  The doctors and insurance companies have a tier of care that they treat this disease with, but the disease doesn't realise it needs to cooperate.  I was put on a Biologic; it didn't do anything.  They started me on MTX (chemotherapy) and I am still waiting for some benefit and not just side effects; shortly I'll be on another Biologic---maybe this one will work.  Basically my RA is not responding well to the treatments attempted so far.  Frustrating? What do you think? 

Steve, too, believed the hype of the ads and in the course of his business, has run across others who suffer with RA.  One in particular seems to lead a normal life from the outside!  She was diagnosed almost 10 yrs ago and is well controlled on MTX and predisone.  She works in the family business, at her home, and is always cheerful and happy to the customers who enter her shop.  On the other hand his wife, on the same drugs, cries out in the night in pain, is grumpy when he gets home from work, can't tie her own shoe laces and isn't responding to these drugs.  How can this be?

This is because MY RA IS NOT YOUR RA!  Every patient seems to be affected differently.  For instance, it is believed that RA primarily effects the hands first.  But when you read the onset stories on RA  you see that this is not actually the case.  It is now understood that different components of our immune system are effected by RA and therefore the different Biologic drugs target different aspects of the immune system to suppress.  It is a lottery to figure out which one works the best for each individual.

I also believe one of the biggest causes of confusion is the misunderstanding of the differences between RA and OA. Osteoarthritis (OA) is what your Granny has.  It is caused by wear and tear on the joints.  Most of us will have OA by the time we reach our 50s.  Rheumatoid Arthritis (RA) is an autoimmune disease that destroys the lining of the joints.  It can affect you at any age.  I was originally diagnosed at 6 yrs old. 

I hope that in the near future I will find the perfect combination of treatment that will prevent days like yesterday.  In the mean time please remember that just because that cream worked for your granny, it may not work for me.  I try to keep my disease in perspective.  By belonging to an online RA community I am very aware that there are folks that are not as badly affected and there are many many more who are allot worse than me.

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