Suggest Treatment For Acrosclerosis
Greetings
Thank for you response. Re: apt with rheum md - has left me with a few questions - thankful I have access to you.
From md's typed notes from visit 1/31/2017-"..acrosclerosis to PIP joints but w/o any progression in last few yrs. makes me reconsider my dx of ANA negative scleroderma very unlikely and variant normal skin the in fingers appears more likely the thinness of skin in palms and fissuring of finger pulp points to eczema/atopy and away from scleroderma as well..."
I told the him that I had been on prednisone last dose on the 25 of XXXXXXX When he talked about his doubts now about the dx of scleroderma I asked why (other than what he noted above) he said well you no longer need oxygen. I told him I was on 2L at night and PRN to keep sats 93% or above. It was like he did not want to entertain the idea that I still required oxygen and continued to have the same issues as I did when he diagnosed me in late 2009 & 2010. **see below for notes from rheum md re: basis for diagnosis of scleroderma. Back to 1/2017 appt. I asked if not scleroderma what was wrong with me he replied "I don't know"... went on to discuss lab work needed, he would see me in 5wks at which time he would only prescribe a low dose of prednisone given his exam and reconsideration of his previous dx. He left me with the impression that my issues might an "emotional overlay" (a term he used in his notes in 2011).
**Notes from rheum medical records
2010 ...pt here for f/u of her scleroderma... "on exam there is acrosclerosis to the level of the PIP joints and a hint of tightening proximal to the PIP joints but certainly none proximal to the MCP joints on either hand.There is a bit of tightness of the connective tissues around the mouth giving a pinched appearance..." assessment: scleroderma, S\P thoracotomy with mass resection.
During 2010-2011 rheum md was talking about my tx options-prednisone, tx with cytoxin, blood transfusion. In office notes he documented that I understood this was not a curable disease.
In 2014 my PCP and I discussed that yes some days were better than other days - however this did not indicate that I had been cured (as he noted "there is no cure for this disease treat symptoms as best as possible). I am confused is the rheum md correct in that despite his diagnosis in 2009 which was confirmed by the pulmonologist and my O2 requirements,etc that somehow I am cured despite not taking prednisone or Cytoxin or other txs.? Is it possible to de-diagnosis(for a lack of a better term) someone after the fact. Please help me to understand.
So sorry for taking so much of your time -
Scleroderma
Detailed Answer:
Good evening
Sorry for the delayed reply. Was out of country for a conference and just returned today
1. Well I am not sure why they have complicated the diagnosis of Scleroderma. You had a bit of skin tightning and acrosclerosis as well. the only factor they feel is ANa negative.. also the Lung involvement is not explained...
As per my understanding of the disease, skin normally tends to get back to normal after 4-5 years. It gets lightened and the color returns to normal as well. So your Rheumatologist can miss that diagnosis.
The only symptoms we can catch it from, is the persistence of raynauds( bluish discoloration of nails on cold exposure...To confirm if it is due to scleroderma or not, you can ask your Rheumatologist to run Nail Fold Capillaryscopy as it will give us a clear idea...
2. As for your lungs, I would like to see the CT report...To be sure what it is and what they are planning... Interstial lung disease can be autoimmune or due to scleroderma...But treatment remains the same...
Do update me with results...
Regards
Dr Naval
Further course
Detailed Answer:
good evening
Oh well don't worry about it. it s my pleasure I can be of some assistance to you as I understand I'm these long standing diseases a bit of support always helps. you are doing your part already
do let me know the results
regards
Dr naval