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jeannie mcc

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About jeannie mcc

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  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 severe and the same can be said for the ILD. GI-wise, my esophagus is 'dead', there's no motility at all. I am starting to have swallowing issues and some bowel issues. However, thanks to some really great doctors and a few new medications, I am still doing pretty much what I want, albeit with supplemental O2 . I no longer hike above 8400' /2600m, because I just can't carry enough O2 to do longer/higher hikes. I’m a lot more careful with my diet and the mechanics of eating. We still travel and I have been doing some flying as P2 with a friend. I guess the biggest impediment to doing everything and anything I want is my age, having hit 72 this year. Dealing with age-appropriateness is such a pain. :-) I hope everyone is well and happy, Fondly, Jeannie
  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 extremely lucky in that I live in the same city as National Jewish Hospital, which is the number one lung hospital in the USA and at that time had one of the most sclero-aware rheumatologists working there. I think my advice to you would be to get your depression under control first. I also have fibromyalgia and the medication I take for that helps with depression and anxiety as well as pain. You can't fight your own case when you feel hopeless. The next thing I would do is get a consult with a good GI. I’m not a doctor, but I could go on for hours about GERD and oesophageal strictures. It sounds like you might have a stricture and a report of oesophageal anomalies would be useful in getting a rheumatologist to think about 'sine'. I'd do the same with your other symptoms - try and see the relevant specialist. If you can add positive reports from other specialists, it goes a long way. It's a tough battle to get a diagnosis. I was willing to consider I was just a raving hypochondriac and needed psychiatric help by the time I got mine. Good luck, take care of your totally understandable depression, and keep fighting. And by the way, tell that less than helpful rheumatologist that rare does not equal never.
  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 the fundoplication may be revised. My ILD is classed as moderately severe, and if my most recent echo was accurate, my PH is severe. That all sounds awful but I am still doing everything I used to, albeit slower (well, I *am*71!). So few people know much about Scleroderma and fewer still have heard of 'our' form. When you ask about what to expect you can get some pretty varied answers. What I can tell you is the quality of your life will be up to you. Attitude and doing all the things to stay healthy (good diet, lots of exercise, good sleep habits, and counseling if needed to develop good coping skills). Be a nag until your muscle/joint pain is adequately addressed. Good luck, Becky, I hope your life is as much fun as mine is. Jeannie McClelland
  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 help others get quicker, better diagnoses and treatment, hey, it's worth it. JJ
  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 just the response we need. I'm sorry about your mother and that you're facing all this, but glad to have you as a new friend. JJ-Knitter (keeping fingers warm stitch by stitch :rolleyes: )
  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 ISN and all my fellow sclerodermians. And thanks, too! JJ
  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 fractures - they did an X-ray to check because of ongoing back pain. (I didn't mention I'd recently spent several weeks heaving large and heavy pots of trees and shrubs around! ) JJ
  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 intelligent (well, at least I hope so) part in my care and the decision making process. Retaining some control over my life is very important to me. If I could wish for two things for all of the people out there who are still struggling to get a diagnosis, it is that they get it quickly and that they are treated with dignity and respect. Best wishes and warm hugs to all of us! JJ
  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 lot of boat payments for my general practitioner's practice Warm hugs, JJ
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