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Posts posted by greypilgrim256

  1. Thanks for the replies.  I put a lot of faith, maybe too much, in antibody testing and statistics.  While I know that they are not the absolute "truth" and there are exceptions, numbers and trends tend not to lie.


    I definitely feel better than I did this time last year, but the uncertainty of this disease is awful.  The fact remains that men tend to have a worse outcome than women and my antibody type (U3RNP) is extremely rare, tends to have one of the worst mortality rates due to a high incidence of isolated Pulmonary Arterial Hypertension regardless of skin involvement.  


    With that being said, I do agree with you Shelley about people categorizing themselves as either diffuse or limited.  I also have read from someone that once said "this disease presents itself early" and I'm clinging to that.  


    Regardless, I am still adopting an approach to be as aggressive with treatment as my doctors will allow. 

  2. This is so strange.  I have a diffuse antibody (U3RNP), large joint pain, tendon friction rubs which are essentially a sure sign of diffuse skin involvement, but my skin changes are limited to my hands, ankle area, and now I feel my face being affected, but it is all very minimal changes.  


    The 15mg methotrexate seems to be helping my painful tendon friction rubs and joints, but I still feel my face feeling "weird".  Hard to explain.  Don't get me wrong, I am VERY thankful I do not have serious widespread skin involvement, but I am very confused because all the signs seems to point to having diffuse.  


    I was also under the impression that diffuse sclero moves FAST.  Who knows.  All I know that this disease is awful.  


    Is it possible for the disease to "back off" after a while? 

  3. Is there anyone here that has had a late or "slow' onset of skin involvement typical of diffuse scleroderma? 

    When I say late, I mean over a year+ from first symptoms. 

    I had all the classic symptoms of diffuse sclero like the swollen hands, joint aches, a positive diffuse antibody, and tendon friction rubs, but I still have no developed wide spread skin thickening, nor do I have any evidence of thick skin above my elbows, knees, or on my trunk. 

    Has anyone had initial symptoms develop and then YEARS later progress to widespread thickening?

  4. My Glomerular Filtration Rate (GFR) has decreased from 110 in October to 83 from my latest labs yesterday. My serum creatinine has increased from .78 to 1.1.

    My sclero specialist doesn't seem concerned as the GFR is still within "normal" range. I'm not sure what to make of this or how concerned to be about it. She doesn't want to take me off the 15mg of Methotrexate, and I am reducing my 5mg prednisone to 2.5mg a day in hopes of getting off it entirely. 

    Not sure what else I can do other than continue to monitor it. 

    Has anyone else had a declining GFR? Has anyone had it improve? My understanding is that once it goes lower it does not go back up, but I have read reports of people having an increased GFR.

  5. So I seem to have developed 3 new tendon friction rubs.  To anyone that has had them, I have read that they resolve after immunosuppressive therapy.  Has anyone had them go away after starting Cellcept or Methotrexate?  Thankfully, the new rubs in my ankle doesn't hurt (yet) but the rubs in my ankles still kind of hurt.

  6. I don't have any advice to give you on the quitting front as I have never smoked a cigarette in my life.  HOWEVER, my wife recently "quit"....she really just cut down big time on cigarettes, and she had major success using the electronic cigarettes.  I know some people worry about the e-cigs, but I have to imagine that there is nothing legally worse you can do to your health than inhale a modern cigarette.  Good luck with the quitting!

  7. Hi

    It went well. Dr. Hsu at Robert Wood Johnson diagnosed me with diffuse.

    Dr. Ami Shah of Johns Hopkins said I have Type II limited, and I'm not sure what that means.

    She said she did not find any evidence of tightening on my chest or past elbows, so I am assuming that is what she means. She recommended doubling my dose of Methotrexate but said that Stemcell transplant would  probably be too extreme of a solution as of right now.

    I highly recommend Johns Hopkins though. Dr. Shah was fantastic. Very methodical, kind, and informative. She spent about 2 hours with me going over everything.

  8. Doctor Burt at North Western has agreed to review me for possible Stem Cell Transplant.  I plan on having my rheumatologist and hopefully my Sclero specialist get on board and write letters for the evaluation, which is done at North Western Memorial Hospital which is not in my network of Blue Cross Blue Shield.   If my insurance tries to deny coverage for the evaluation, has anyone had success appealing the decision?  

  9. I also live in North East US.  My mother lives in Maryland by Washington DC.  It is very rare to have power outages unless there are MAJOR storms and if they do happen they are usually fixed within a few hours.   Bundle up in layers with some thick wool socks and put on some thermals and you'll be fine.  The winter and snow is beautiful. 

  10. A tendon friction rub is when you place your finger or hand on one of your joints that is by the affected area, in my case, my knuckles, as the hands are typically the first to be affected, and you can feel and sometimes hear a grating leathery sound when you flex or extend your joint.  They are almost exclusively a symptoms of diffuse scleroderma.  

  11. Hello all, and Happy Thanksgiving.  I'm currently up to my 5th week of Methotrexate and it seems to be going well.  I am only on 7.5mg a week, which my understanding is a very low dose. 


    Has anyone been on a similar dose?  Was it effective? 


    I am currently weaning my Prednisone down and am worried about the terrible joint and muscle pain coming back as I wait for the MTX to start working, which I understand can take 3-6 months. 




  12. I appreciate all the input from everyone.  However, the aesthetic reasons are actually at the bottom of my list of reasons why I would like to consider the stem cell treatment route.  I found out that the antibody type I have is the U3RNP antibody which has one of the highest mortality rates of any antibody with diffuse scleroderma and tends to affect organs quickly, particularly the heart. 


    HSCT should not be done for patients with heart involvement and Northwestern is very rigorous with their selection process, hence the near 0% mortality rate in Dr. Burt's trial.  Logically, the quicker I make a decision the less chance I have with having complications with the heart. 


    My fear is if I hesitate and my heart does become involved/hardened in a few years, I will have missed my chance to actually have the procedure done.  I know what goes into the procedure, and I also know that there are many good medications that slow the progression of this disease down.  Everyone has to make difficult, and permanent, decisions with this disease, as in life.  I do plan to send in my paperwork. It is possible I will even be denied based on the fact that my lungs are not yet involved, as I know that is one of the criteria for being involved in the trial.  Who knows where I, or anyone for that matter, will be in a year from now with our progression.   

  13. I would not be interested in the SCOT trial.  As far as I know they are not recruiting anymore patients.  That, in my understanding, is that it included full body radiation.  The ASSIST trial currently being used by Dr. Burt at Northwestern University is in phase III of its clinical trial.  I don't think they have had any deaths yet in Phase III of the trial.  




    I'm more worried about my kidneys quitting on me and this disease impacting my heart, thus making me ineligible for a transplant treatment in the future.  I know this is an extreme procedure, but as far as I know, the more healthy you are at the start of your disease, the better your odds of getting a successful transplant. 

  14. I am reading more and more about Stem Cell Transplant as part of the clinical trial with Dr. Burt at Northwestern University in Illinois.


    I figure I am roughly 1-1.5 years into this disease and I guess things have progressed slowly and could always be worse, but now I feel that my face is beginning to be affected and feels slightly tighter.  What can I expect after that?  My chest and organs?  


    Has anyone had any experience with a Stem Cell Treatment?  My understanding is that the patient needs to be sick enough, but not TOO sick to the point where they can't handle the treatment. 


    Stem Cell treatment seems to be a genuine route to remission from this, but I know the procedure itself is costly AND dangerous.  I am only 34 years old and the way I see it is that if there is a way to keep my body from progressing any further.  


    Looking for input from anyone that has had, or knows of anyone that has had Stem Cell transplant procedure done.  

  15. Wow, Miocean, from a 27 to a 0 is amazing.  I have read that there tends to be a natural course of the disease with skin softening around the 5 year mark, but as we know, everyone is different.   


    I have also read a lot of studies that tout Cellcept as being one of the best medications for scleroderma and its effectiveness in lowering MRSS and stopping the progression of lung involvement.  I spoke to Dr. Hsu again and she reiterated her to stay with the MTX for now because I seem to have limited skin involvement, but significant joint/muscle inflammation as my primary symptom.  


    I am also waiting on results from my 24hour urine test, so I guess we'll just see what they say.  Been having a lot of flank pain recently, and the home urine dipsticks keep turning up positive for proteinuria. 


    I also made an appt. with Johns Hopkins in Maryland in December because they are considered to be one of the best hospitals in the nation and have a scleroderma center.  Dr. Hsu was very supportive of this. 

  16. I have read many great things about Cellcept.  Is anyone on it, or has anyone been on it?  


    Was it effective?  


    Were there serious side effects?  


    How long did you try it?


    I am currently on Methotrexate but am worried about my kidneys, MTX can make lungs worse, AND the fact that it makes me feel awful.


    This is what I have read from Johns Hopkins site:


    A recent study suggested that methotrexate did not significantly alter the skin score (a measure of skin thickening) compared with placebo (no treatment). Cyclosporine is not completely studied due to reports of renal toxicity. The most promising drugs are mycophenolate mofetil or cyclophosphamide with or without antithymocyte globulin. Unfortunately, there is no placebo-controlled study (i.e., half the patients get the medication and half get a sugar pill) to define their exact role in treating scleroderma, but if used during the active inflammatory phase of the disease, they appear to work.


    I have also read studies of Cellcept reducing skin scores and keeping or IMPROVING lung function.   






  17. Thank you both.  I still think I am going to ask to be put on Cellcept as it is supposedly a much easier drug to tolerate with a much better success rate with scleroderma.  I have read dozens of personal testimonies and many clinical studies about Cellcept (mycophenalte mofetil) drastically reducing skin thickness and being much better for kidneys.  All I know is that the MTX makes me feel pretty run down. 


    I know that there is a great controversy surrounding antibiotic treatment in the sclero community, but I did go see an antibiotic doctor.  I am still very intrigued by the idea of a mild medication like antibiotics being able to help with this illness.  I'm not sure I will go that route, but it is an option to explore.  

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