A brief history

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Pain in hands, pain in feet, then pain in knees.  Trip to rheumatologist (after waiting nearly a six months for an appointment – why aren’t there enough rheumies in the world???) who tested me for everything under the sun…lupus, ms, RA, myeloma, lymphoma, leukemia, all kinds of cancer…very scarey time.  Everything came back more or less fine .  A few autoimmune markers…positive ANA, positive anti-CCP.  Negative RF.  Kidney function not great.  Strange rash on my face that would come and go.  Sore, crazy dry eyes and  mouth…but negative anti-SSA/RO antibodies.  Raynaud’s phenomenon.  Symmetrical bilateral arthritis…very painful, but non-erosive.  A bone scan showing synovitis in my hands and feet…..AND hips and shoulders.  Small joints affected, large joints affected.  So..Mixed Connective Tissue Disease, which is a combination of several autoimmune diseases. Autoimmune diseases are all about criteria.  Meet the criteria, you have the disease.  But sometimes you don’t quite meet the criteria, but have many of the signs and symptoms. I am that way with Lupus (SLE – systemic lupus erythematosus with the focus being on seronegative Rheumatoid  Arthritis!  Not cancer! Yay!!!  Diagnosis!!! Reason for all this pain.

Thank the gods!  Now let’s get started on making it go away!

Then I googled.   Wait…Not Yay.. DefinatelyNot. Yay.

No cure?  What do you mean, no CURE???  Can’t medicine cure everything?  Er, no actually.  Doctors are not God.  Shame about that.

But there are *treatments*.  Oh, OK.  Good then.  Gimme those!

Wait.  Not so fast.  They take time to work.  Lots of time.  And there are side effects.  Some of them are quite unpleasant.  E.g. one of the side effects of methotrexate is…DEATH.  That’s a pretty severe side effect, as side effects go.  Wait…let’s just start with the safer drugs…

So it began…I refused methotrexate at first. I refused to believe I was that sick. Denial.  Possibly a very big mistake, but no use worrying about it now.  So I went with sulfasalazine, plaquenil and celebrex. Then I swapped the celebrex for diclofenac, then mobic, then ibuprofen, then finally naprosyn.  Which helped some.

Next was tonnes of prednisone – finally some relief! And the realisation that the doctors were right – I have moderate to severe rheumatoid arthritis and the denial had to end. So on to methotrexate…imuran, arava…and a few more I’ve forgotten. In all kinds of combinations.   Long journey.

And in the meantime, my RA has progressed.  I have lots of pain in my Sacroilliac (SI) Joint, my ribs often ache and sometimes the pain is horrendous (costochondritis), my elbows won’t straighten most days and my shoulders…well, lets not even go there. Lately I my jaw has started to ache…so soft food only!

Methotrexate has made me worse rather than better.  It is the gold standard treatment for RA, but I’ve had to stop taking it because of the side effects.

The drugs from here on in get worse and worse and scarier and scarier. But life with Rheumatoid Arthritis is pretty scarey too. I live in hope of finding the magic combination of drugs and lifestyle that will make me whole again. And allow me rejoin the real world.

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