Jump to content
Sclero Forums

jeannie mcc

  • Content Count

  • Joined

  • Last visited

Everything posted by jeannie mcc

  1. The FDA has finally released it for treatment of SSc-ILD, as of Friday! Jo, is it available in the UK, do you know? jeannie
  2. Hi Clementine, Yes, National Jewish is a center of excellence. I think there will eventually be a press release about that. I’m seeing Dr. 'Mila' Kastsianok and I think she's excellent. All my other specialists are at NJ too. I hope you're well and happy. xxx
  3. Hi All, Here I am again, back to affirm there can be a good life with scleroderma. It will be 13 years on October 26th since I was diagnosed. At that time I had mild pulmonary hypertension, mild interstitial lung disease, no skin thickening, and horrific GERD. Um, I had 2 dogs and no grandchildren, and was an active hiker at high altitudes. Things have progressed some. I now have 4 grandkids and 3 dogs! The #3 dog wasn't really intended but once you get on the herding dog rescuer list, things happen... As for the scleroderma, the PH/PAH is now moderately s
  4. Hi Janet, If you did a topic search on Systemic Scleroderma sine Scleroderma, you may have seen some of my posts (I'm also known as jeannie here). I was diagnosed with this form of scleroderma in 2006. I think what finally got me my diagnosis were the verifiable 'co-morbid' conditions: GI issues verified by a gastroenterologist, interstitial lung disease verified by a pulmonologist, and pulmonary hypertension verified by echo and then a right heart catheterization. I have no skin thickening whatsoever. I only have a positive ANA, never tested positive for SCL-70. I also got extrem
  5. Dr. Fischer has left his clinical practice at University Hospital of Colorado, effective this month, to take a position as Medical Director of a pharmaceutical company. I’m posting this just in case any of his patients got missed when the notification letters were sent.
  6. Hi Beckybee, I was diagnosed with Systemic Sclerosis sine Scleroderma in the autumn of 2006. I had already developed ILD and pulmonary hypertension. I'm still going strong but in the years intervening have developed Grandma Syndrome, GI issues including a wicked spare tire and jelly belly, and worst of all, a tendency not to take anything too seriously. I was one of the first patients on Letairis, and am still on it, and have been on mycophenolate mofetil for most of the past 12 years. I have had a Nissan fundoplication but now have no peristalsis in my esophagus, so th
  7. Hi Gigi, I've agreed to participate in every study my doctors have asked me to and I think I'm up to 6 now. Three of them involve blood draws, most of them involve questionnaires, one that was investigating a possible link between pulmonary hypertension and glaucoma got me a whole morning of extensive eye exams. I think most of them wanted some level of access to my medical records. None, so far, have been trials of new medications, but I think I'd agree to that so long as it didn't change the regimen that is working so well for me. I figure that anything I can do that'll hel
  8. Oh my! I'm not sure whether your trauma or Grace's made me wince more!! Deary me~ Brave, brave ladies, the pair of you. Hope everything heals up properly for you both. Hugs and a virtual cup of hot chocolate (would that help? You can have marshmallows and/or whipped cream on top...), JJ
  9. Hi Millefleur, I'm a "sine" myself with ILD and PH and I can vouch for what Janey said: lots of new treatments available and more coming along all the time. Another good thing is once you have a diagnosis the doctors are much more willing to schedule all the tests necessary to keep an eye on things. This forum is truly a wonderful place. We all love and care for each other and each new member is a very welcome addition to our circle of friends. We can ask what seems like the dumbest questions, voice our worst fears, share all the things that go on and somebody will invariably send
  10. My rheumatologist mentioned today that the latest chest CT showed air in the esophagus and that it shouldn't be there. We both then got distracted and I forgot to ask more about it. So I came home, Googled "air in the esophagus" and guess where it sent me?! Ayup, here. The summary said "This radiological sign, although rare, should suggest Scleroderma and may be particularly useful in patients with "systemic sclerosis sine scleroderma." Guess who has systemic sclerosis sine scleroderma... :P I love Sclero.org and this forum is just wonderful. So Hurrah for the good folks at I
  11. We talked about all this before, and I said I'd post after the results were in from the latest DEXA. Because it was a different machine, the doctor wasn't willing to swear to it, but it looks like a year of 3-monthly Boniva infusions has at the least prevented any more loss of density and possibly improved things the tiniest bit. I recently was referred to an endocrinologist and she wants me to switch to Reclast, she seemed to think that it was the more effective medication. That'll happen in December, the insurance company being willing~ I do know I haven't had any more fracture
  12. Hi Razz and all, Thanks for the input! I'm at the 15 months stage and it's not causing me any problems. I've achieved stability (not necessarily mental stability, mind you) and not had any side effects. It's kind of become my security blanket. I should have thought about the transplant folks - one of my closest friends is 10+ years on a successful kidney transplant and has taken CellCept almost the entire time. Hugs to you all! JJ
  13. How long are most people kept on CellCept? If there are no serious side effects, can a person be on it 'forever'? How about if things seem to be stable? Can it be discontinued without the scleroderma flaring up again? I know that with things like cyclophosphamide there's usually a maximum recommended treatment duration, but I don't think I've ever seen any thing like that for CellCept or Imuran. Happy Autumn to all us Northern Hemisphere folks and I guess it's hooray for Spring for the folks below the equator! JJ
  14. Hi all! Thanks to so many for responding to this. It's a question that's interested me for some time. My sense is that all of us think we were showing symptoms for a long time before getting a formal diagnosis, that it took a "constellation" of symptoms to get the correct diagnosis, and it's about 50/50 whether or not a rheumatologist made the diagnosis. I think I was more relieved than anything else when someone finally put a name to what was going on. I could find out more about a specific disease, find out what sort of tests and treatments would be involved, and take an intellige
  15. Hi All, After reading all the posts about the difficulty in getting diagnosed with sclero, I wonder how long everybody thinks they had sclero before the diagnosis (diagnosis), and how do you tell anyhow? Me? I'm guessing less than 5 years and I'm basing that on a series of high ANA's, livedo, and the appearance of the first teleangectasia. I'd also be curious to know how many rheumatologists (*) you saw before the diagnosis and whether or not it was actually a rheumatologist who had the Eureka! moment. In my case it was a pulmonologist. (*) It was only one, but I sure made a
  16. Hi love, So the rheumatologist has never heard of systemic scleroderma sine scleroderma? My skin looks fine, always has, and the only elevated blood work ever was high ANA with nucleolar pattern. The first rheumatologist I saw said the same thing yours did. Less than 2 years later, after a full work up elsewhere they said I had "SSc sine Sc", ILD, PH, significant GI problems, and fibromyalgia. Oh yeah, also teleangectasias, livedo on the legs, and nailfold capillary dropout. You might want to ask about SSc sine scleroderma when your great neurologist refers you to a more open-minded rheumat
  17. Oh, Tru, you go girl!! I'm glad they accepted your offer. Too much stress for you~ If we don't stand up (or jump up and down shouting loudly) for ourselves, who will? We're all cheering for your victory. JJ
  18. Hi Razz, I do Pilates, but I pick and chose so I don't over do it. It concentrates on the core muscles and flexibility more than developing strength, but you can do most of the exercises with those big rubber ribbon things. It's worked extremely well for me over the years. Your public library might be able to get the DVD's for you. The heated pool is good, but the air when I came out was too cold and set off dear old M'sieu Raynaud and they wouldn't let me stay in it forever and just deliver my meals. :D I couldn't figure out how to manage the O2 either. I loved yoga, but I
  19. Good for you! Going to the doctor is the first and biggest step. Did you get a chance to make a rheumatologist appointment or are you waiting till the test results come back? We're all cheering for you! JJ
  20. Oh Tru, what a bummer~ Good luck with the money tree. I understand fertilizer from a bull's excrement helps them to grow real fast. ;) I had this happen to me with payroll taxes. All of a sudden they decided they'd miscoded things for months and took it all out of my next check. I threw a major wobbler and said that since they'd made the error over X-months, they could recover the money over the same period of time and if they didn't give me a check right away for the proper month's pay less 1/x of the overpayment, I'd report them to every government agency I could think of and do my
  21. My doctors, bless 'em, have been very good about prescribing pain relievers and potent anti-inflammatories when I need them. They say that things get better faster if you aren't in constant pain and "life is too short to be miserable." I think being willing to do the PT contributes to their willingness to work with you. I hope your MRI pinpoints the problem for you and you get some real relief soon. Warm hugs, JJ
  22. G'day! (I've just read some Aussie biographies, so forgive me, OK?) I've heard of both hospitals and nursing homes taking used books. Another place that likes them is community senior centers. It's kind of neat to see what turns up on those shelves! I haven't read JD Robb yet, but she's on my list too! I've got some mixed feelings about Jeffrey Deaver, too. I've read most of Patricia Cornwell's Kay Scarpetta series, but she's like Deaver - a little too dark for me. (So why do I keep reading them?!) Susan Wittig Albert would probably be a hit with anyone who likes Diana David
  23. Hey Smac, Philip Margolin? That's a new one I'll have to look out for. Every time one of the book stores sends me one of those "people who enjoyed [so and so], also bought [this book]" emails, I stick the info on my check-it out reading list. My short-term memory is so bad that I have a folder full of author sheets, with lists of their books that I tick off when I've read them, that I lug along to the library, used book store, or the regular book store when they send me good 30% off coupons! A couple of friends and I lend each other books. We all have 2 el-cheapo canvas ba
  24. My fave coping saying is "it's not the destination that matters, it's the journey." Chin up and listen to your doctors - rest may not cure all, but it sure does help. Cuddle those dogs (and Howie too) and remember that we all here care and send warm hugs and good wishes. JJ
  25. Hi KarenKaye, I had pretty bad tendonitis in the left shoulder and "some" in the right one. The cortisone injection didn't help, but some intensive physio did. They started with moist heat and massage and used some kind of machine on the shoulder, then strapped it with Kinesio tape which I had to leave on for 3 days. After a couple of weeks of that 2 x weekly, they introduced exercise. That went from something pretty mild to a whole set of exercises building up strength and freeing up the shoulder. I've got pretty good range of motion now and not much pain at all, as long as I keep do
  • Create New...