tag:blogger.com,1999:blog-2026605810085414094.post6489138832863285765..comments2023-12-07T13:18:41.882-05:00Comments on Scleroderma Blog: 2009 update - Johns Hopkins visitScleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-2026605810085414094.post-6981347960649080622010-01-04T12:17:09.277-05:002010-01-04T12:17:09.277-05:00All - Happy New Year everyone! May 2010 be better ...All - Happy New Year everyone! May 2010 be better for all of us then 2009!<br /><br />I have my 6 month visit coming up mid January and I'll post back after that. <br /><br />Kathleen - I don't know where you are, but if you can get to Scleroderma Center @ JH and they can take you quickly, then sure! If they can't, and some place else can, I'd suggest going to any scleroderma Scleroderma Bloghttps://www.blogger.com/profile/06757088123877348789noreply@blogger.comtag:blogger.com,1999:blog-2026605810085414094.post-353258287055681412010-01-04T00:09:25.292-05:002010-01-04T00:09:25.292-05:00Hi - It was encouraging to read your entry and how...Hi - It was encouraging to read your entry and how well you are doing. After a 3 year search, my 24 year old daughter has been diagnosed with scleroderma. She is very ill ( failed esophagus, 70 LB. weight loss and too much pain to use her feeding tube)and we are looking for the best place to take her. It sounds as if JH is one of the top choices Would you concur? Her depression is really Unknownhttps://www.blogger.com/profile/13608090753838512738noreply@blogger.comtag:blogger.com,1999:blog-2026605810085414094.post-871413280089787352009-12-12T16:42:44.741-05:002009-12-12T16:42:44.741-05:00Hi
Just found your blog. I also see Dr. Wigley and...Hi<br />Just found your blog. I also see Dr. Wigley and have been for 16 years going on 17 years.<br />I just read the Fiscal Report for 2009 and there are some impressive things happening in search for a cure. My next appt. is in March 2010.<br />I was diagnosed in 1993 with Scleroderma and in Novemeber with Pulmonary Artery Hypertension-Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2026605810085414094.post-76314329235676860972009-03-11T10:55:00.000-05:002009-03-11T10:55:00.000-05:00Hello there! Just found your blog. Great informa...Hello there! Just found your blog. Great information. My husband also sees Wiggy (as we call him) at JHU. We're currently researching starting the cellcept.Meganhttps://www.blogger.com/profile/02985615916783160489noreply@blogger.comtag:blogger.com,1999:blog-2026605810085414094.post-7271477825740235632009-02-10T21:28:00.000-05:002009-02-10T21:28:00.000-05:00Last week I had a Pulmonary Function Test (PFT) an...Last week I had a Pulmonary Function Test (PFT) and echo cardiogram. I can't tell much from watching the echo but there wasn't any problem in the past. The PFT is pretty easy to compare to previous tests and the "reference" you are shooting for which is 100%. I think all the results were the same or better with this latest PFT.<BR/><BR/>I emailed the team at Johns Hopkins to be on the lookout forScleroderma Bloghttps://www.blogger.com/profile/06757088123877348789noreply@blogger.comtag:blogger.com,1999:blog-2026605810085414094.post-82553073794737279392009-02-10T20:24:00.000-05:002009-02-10T20:24:00.000-05:00Did you decide to go off the Cellcept? I see Wiggl...Did you decide to go off the Cellcept? I see Wiggles tomorrow, and I'm wondering if he is going to suggest me going off. I'm currently on 1,000 mg (guess I'll probably have to go down to 500 mg first). Cellcept saved my life, but I would like to go off it.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2026605810085414094.post-80348020575065960442009-01-13T12:13:00.000-05:002009-01-13T12:13:00.000-05:00Someone asked if I was ever on minocycline.The ans...Someone asked if I was ever on minocycline.<BR/><BR/>The answer is I was not. All medication I've taken specific to addressing the disease is CellCept. Everything else was either for pain/inflamation, reynauds, acid reflux, etc.Scleroderma Bloghttps://www.blogger.com/profile/06757088123877348789noreply@blogger.comtag:blogger.com,1999:blog-2026605810085414094.post-53254987822664728762009-01-07T09:41:00.000-05:002009-01-07T09:41:00.000-05:00I am so glad that you are still doing so well all ...I am so glad that you are still doing so well all things considered. If there is such a thing as luck with having a disease, then I hope your's is good and the upcoming medication reduction will work out.<BR/>Thanks for the update!bouyhttps://www.blogger.com/profile/06923749214219760413noreply@blogger.com