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Fay in Florida

My Journey with Myositis, Updated!

ILD, Interstitial Lung Disease
PM, Polymyositis

TMA, The Myositis Association

Hopefully I won’t bore anyone with my update on my “Journey with Myositis”
As some have already read my story on TMA through Zarashomepage.com I would just like to let everyone know how blessed I’ve been these past 5 years.
I was diagnosed with PM and ILD in June 2004 and at first things went along fine, I was showing some improvement in strength but 2 months after this being dx’d I was put on Methotrexate, just after 2 doses of 7.5 I went into resp.failure due to a side affect of the Methotrexate combined with having ILD, this put me into pneumonia and I actually went to the other side and back and was on a ventilator for 5 weeks in 2 hospitals a total of 8, it took almost another year to turn this around, I was on oxygen 24/7 lung capacity at 39% and on a feeding tube and walker, the whole nine yards!  Finally in August 2005 I changed dr’s and found a great neurologist who through careful treatments I finally started to get past this and started climbing that huge mountain.
It seemed life would never be the same as it was before PM & ILD but with determination and prayers and the support of my husband I have gone further then the doctors ever believed I would.
I have been off oxygen since 2006, and as of June 2008 came off Prednisone and the Imuran as of May, 2009 my cpk at the start was 4400 and this June it is now at 116 with no medications at all. The lung capacity as of Feb.09 is now at 98.5% and I am stronger then ever, I did suffer permanent muscle damage due to the time it took to be diagnosed and I work at trying to rebuild what muscles are left, this is still a battle that I hope to say is improving at some point.  I go for lab work in August and see the neurologist on  August 14th. I am praying for another miracle, guess I should just be thankful of where I am but miracles have happened for me many times over.  If the lab work is staying down and maybe even lower then I am considered in remission and with the help of any drugs.
So to the newcomers I just want to say there is a light at the end of the tunnel and if “God brings you to it, He will bring you thru it”, just have Faith and determination and you will get there too.
As of Aug. 21st 2009 .. my cpk rose to 437 and my neurologist put me on cellcept 2000mg. but I was not handling this medication very well and on Sept. 25th. he decided to put me back on Imuran, I had been off this since May,09 at this time he noticed redness on my knuckles and the finger tips were splitting.  He then insisted I had DM rather then PM, I then made an appt. with my Dermatologist who also thought it might be DM so he biopsied the knuckle on the left index finger, that report came back on  Sept. 30th. conclusive as PM with overlapping DM. Still treatment is the same and for now I am at 150mg. of Imuran and I return to the Neurologist on Oct. 16th. praying that the cpk is on the way down once again.  But still I have decided this is just a little detour in my “Journey” and am very thankful that I am recovered from where I was in 2004 to where I am today.
Thanks, Fay

Submitted by: Fay 12-10-09

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