Tiff's progress… AP to MP

[Tiff]

Palindromic Rheumatism – PR – is a form of arthritis characterized by migratory, intense joint pain that does not result in joint erosion.  Typically they are sero-negative, but a variety of often inconsistent blood test results can be seen.  Since PR is very rare, not much research is available, but some studies indicate that a large percentage of these people go on to classic RA.  Compared to RA, PR has a large natural remission rate when it does not go on to RA.  More information can be found at this link:

http://www.hopkins-arthritis.org/physician-corner/cme/rheumatology-rounds/palindromic_rheumround1.html

Aug 2005 – first symptoms single joint

June 2006 – additional joints start showing migratory, intense pain consistent with PR

Nov 2006 – switch ABX for skin issues from Septra (Bactrim) to minocycline and get really dizzy and nauseated at full 200mg/day dose

Jan 2007 – have worked up to full dose 200mg/day without nausea; miserable with migratory pain, depression, fatigue

April 2007 – all symptoms recede for entire summer, but am out of state with ill mother under much stress

Aug 2007 – severe nausea returns; drop two days dosing and PR symtpoms return within a week

Sept 2007 to Mar 2008 – struggle with doses and symptoms with no relief; weekly if not daily PR pain; these pains continue to be very intense single joint pains consistent with PR

Mar 2008 to June 2008 – begin MP; drop mino and add Benicar, slowing working up the dose of mino to 100mg every 48 hours (Q48h)

12 week MP update:

I am ending the first phase of MP and am taking Benicar with pulse dosing minocycline.  On Monday I got some blood tests done.  This morning I got them back, all except the 25D which will take a couple more weeks.  They are very interesting.

I?ve been reporting all along that I have Palindromic RA, which, like RA, can have a variety of blood test variation, but usually they are sero-negative or inconsistent in their labs.  I fit that in that I was always very low or borderline on my RF but had a strong positive anti-CCP.  After 19 months on AP and 12 weeks on MP I am now negative (<20) on the anti-CCP test and have a RF of 44.  Typically the material I have read indicates that the RF can vary widely but that the CCP tends to be very consistent even over several years and that it will often be positive long before other signs are present including symptoms.  I was told not to expect that test to ever become normal again.  I?m even wondering if it is an error.  As far as the other labs ? CRP etc., they are within normal ranges.  Even my anemia is again gone.

Now, as far as my experience of symptoms on MP, I have gone from classically palindromic to low-level pain without visible swelling coming and going rapidly in cyclical fashion in many places, especially in the shoulders, wrists, hands, but everywhere else as well (except my toes which have never been involved).  Others with PR would recognize what I mean when I say it is like wide-scale, strong lurkers.  The doctor is unconcerned by this low-level of pain and doesn?t fear that it is causing damage.  I mentioned that I have read that damage can occur without visible swelling or pain, and she acknowledged that anything is possible, but that she did not think I was in that situation (who knows).  The pain is frustrating and annoying now, but I am able to function although not at the capacity that I would like (not walking 2 miles a day, horseback riding, long working hours etc.).

When you have semi-adapted to PR you might be used to some days that appear completely pain free (no inflammation anywhere).  I could get a lot done on a week of those days!  Now I have quite a few days of ?mild? soreness in multiple places and no days with nothing.  That trade takes an adjustment, but I did think it would be so much worse at

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