Amy's Story

[Kameep]

I?m not sure exactly when or how my ordeal started.  I do remember that mid to late 2006, small weird things were beginning to happen to me.  When I squeezed the shampoo bottle in the mornings, my wrist and grip twinged.  When I held a can of cold soda, my fingertips went numb and white.  At the time, I was convinced that I had carpal tunnel syndrome and tried to make changes to my mouse location and wear funny looking hand guards I found on the internet.  I did more internet research and just assumed I had Reynaud?s and tried to keep my hands warm to avoid it.  Things didn?t stop there though. As the end of that year came and into 2007, I was increasingly fatigued and cold.  My hands started swelling up at night while I slept.  As summer of 2007 approached, I had very little tolerance for the cold and it was getting more and more difficult to make a fist.  I decided to get to the doctor ? but I was more concerned about the cold and fatigue than anything else.  In June of 2007, I saw my GP.  I was diagnosed with hypothyroid and prescribed 100mcg of synthroid a day.  This surprised me since a friend of mine who doesn?t have a thyroid at all is taking 100mcg!  I mentioned to the doctor that my hands were swelling up at night and the Reynaud?s.  Looking back now, I know she knew what was wrong with me but didn?t want to say.  She referred me to a rheumatologist and I was on my way.  Approximately Sept 2007, I was finally able to get in with the rheumatologist.  He looked me over and insisted I see a specialist (Dr. S.) at Georgetown Hospital to rule out (or in) Scleroderma.  Between October and December of 2007, things got drastically worse.  The skin on my hands and arms up to my elbow got very tight and thick; I had a band of skin on my upper chest like a bib that was clearly thickened and tight; I could not look from side to side or up without my skin feeling stretched and tight; my mouth felt smaller and difficult to open wide; my joints were giving me huge problems ? I had problems sitting/standing, walking up stairs, and even walking; my blood pressure was giving me problems (my GP prescribed meds); I felt awful ? tired and generally not well.  Early Dec of 2007, I was able to see Dr. S.  As I walked in the room, she took one look at me and confirmed that I had scleroderma.  She examined me by sight and said that I had ?Diffuse Systemic Scleroderma.?  Prognosis was grim – the rapid skin involvement over the previous 2 months was not a good sign.  She prescribed penicillimine and told me to buy a BP cuff and keep diligent watch of my blood pressure.  I found RBF soon after my diagnosis and researched as much as I could.  I e-mailed Dr. S a week after diagnosis to ask her if she would consider prescribing minocycline.  She said she would prescribe ? but only if I agreed to do both in conjunction.  About mid December, I had my minocycline in hand.  Because I knew I was switching from BCBS to Kaiser Permanente insurance on January 1 and would have to switch doctors ? I never did start the penicillimine.  I put all my faith/hope in the AP treatment.  During the 3^rd week of December, my blood pressure was continuing to give me problems.  I was having an awful time keeping it down.  December 23, 2007, I called Dr. S. to tell her that my blood pressure was 175/105.  She told me that if I wasn?t able to bring it down I would need to come to the emergency room at Georgetown U.  That night, I felt just awful all over.  I took my BP and it was 185/110.  I told my husband and packed a backpack and we headed to the hospital.  They admitted me and I ended up staying in the hospital through Christmas.  During that time, they did a lot of testing and it was determined that they caught renal crisis in its early stages.  By the time I left the hospital, I was on 10 pills a day for my esophagus, joints, BP, thyroid, minocycline, itchy skin, etc.

 

This is where things started to look up!  Within a couple months of being on the minocycline, I was able to wean myself off prednisone, gradually lower my dosage of BP meds with no further issues, and stop the meds I was taking for the itchy skin.  My skin started to feel less tight gradually and symptoms started to reverse.

 

Now, 16 months later ? my skin is about back to normal.  I have no tightness in my face, neck.   I am able to make a fist and my hands do not swell.  My blood pressure remains low 90/55 with the lowest dosage of meds possible.  I am energetic.  No joint issues have returned.  I am not cold all of the time ? though I have always been sensitive to the cold somewhat.  I am able to grip and open jars and small bottles again.  Fine hair has grown back on my arms (and under my arms!)  The list goes on and on.  I do still have issues with reflux and Reynaud?s Syndrome.  All of this and the only side effect is that I am tan! 

I continue to take small dosage of BP meds for protection, meds for reflux, thyroid replacement, minocycline 2x a day, and probiotics daily. 

 

The AP treatment has no doubt saved my life.  Scleroderma crept in slowly and fiercely attacked in October of 2007 and then this treatment attacked it right back and shut it down.  Absolutely no words can express how much gratitude I have for this website and the information I found here. 

 

 

 

 

 

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