Depressing Rheumy appointment

[rajah99]

RA (began 12/06) AP began in 3/07. Off AP April of 2008 – January of 2009. Symptom-free April of 2008 until July 2009 symptoms started again July 2009

Hi Fran

You started AP a few months after being diagnosed, and then carried on for about a year before stopping. When you were “symptom free”, did a Dr advise you to stop completely and cofirm you were truly in remission? Did you have blood tests and xrays at regular intervals to confirm that nothing was still occurring even though you felt ok?

Also what made you start again in Jan 09, though you didnt feel symptoms till Jul 09?

 

[Fran]

Rajah-  The reason I stopped AP was because my symptoms subsided and my sed rate went back to normal (I never had an elevated RF factor nor anti-ccp).  My ANA was positive but we weren't sure that went positive because of the mino or what as it was initially negative and then after awhile on mino it turned positive.  I stopped mino at that time because the mino was making me feel awful (it turns out that was when I began developing my sensitivity to it).  Dr. S (Ida Grove) said I could stop AP and then in the future if symptoms start to come back I should resume.  Before stopping altogether I had a stint on zithro and doxy then I stopped.  I re-started because I thought I felt some twinges of pain and inflammation.  That kind of subsided and then it came back full blown in July of 09 and I've yet to get it back under control.  So actually I was only off AP for a few months before I started back on one form or another.  Hope that answers your question.

Maz-  I'm still thinking about Lyme testing.  I just am having a hard time feeling like it fits.  I don't ever even recall having a tick on me.  I live in the city and its hard to think of a time I ever had a tick.  It seems that I hear people talking about finding ticks, etc.

I'm going to try to restart doxy tomorrow and see what happens.  I'm feeling very good now with all the antibiotics out of my system.  I want to see what happens when I take doxy again.

[rajah99]

Thanks for the explanation Fran. It does sound strange if all the tests are showing normal, how then any damage could have been done?

Were you xrayed at regular intervals to determine any joint damage progression, or were you basing everything on the blood tests?

Also, was there a lot of swelling when you began the treatment, and how long did that last?

Sorry to keep asking questions, its a learning experience for us newbies

[Lynne G.SD]

Hi Fran;
     You don't need to have a tick bite to get Lyme.A mosquite,fles,sand flea or any other biting bug can tranmit it.

[Parisa]

Hi Fran,

The ticks that can transmit Lyme are about the size of pepper flakes and often times go to the scalp or private places where they go unnnoticed.  Generally only about 30% of people get  a rash so there would be no warning sign that you had been bitten.  Also, it's not just deer in the woods that carry ticks.  Dogs, cats, rats, birds, lizards.  It it moves, it can carry a tick.  I know a woman who was bitten by ticks from petting a cat in the suburbs.

[Author]

Posts