Lungs & CIDP
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February 1, 2012 at 12:47 am
Last June I was diagnosed with interstitial lung disease / Pulmonary fibrosis… To go along with my CIDP.
Several months and a lung biopsy later we all figured out that both are auto-immune related with the new distinction that the ILD
has a mortality rate of 2 to 5 years. Can anyone expand on this for me ? I would appreciate your experience in this area.
Hey, while I’m at it, what ever happened to Julie? Did I miss something during a period of time when I wasn’t a faithful reader?
Advise & Thanks… It’s good to be back on the forum. JJM Jeff -
February 8, 2012 at 6:21 pm
Jeff,
It seems as though auto-immune diseases run in families. I am sorry that you have added another one to your list, and that the prognosis is challenging. I wish I had information to share with you, but you have my support. I hope all works well for you. Good Luck
Dick S -
February 10, 2012 at 3:51 am
I don’t know anything about this either.. I know people with CIDP are more prone to other autoimmune issues as well.. Your in my thoughts that things will go well for you!
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February 12, 2012 at 3:57 pm
JJM sorry to hear of your recent diagnosis 🙁 unfortunately I do not know much about it either. Have you done a search to see if here is an online forum like this where you could get some answers and personal experiences? Just remember morbility rates are only statistics—different for every person and lots of variables.
this forum was down for a lot of the month of January, possibly Julie just hasnt noticed it back up yet?
Hope things get better for you, my thoughts are with you. -
February 19, 2012 at 4:07 am
Julie the lady who lives in Virgina and always wrote in such a happy fun way? She went to IVIG Sub Q and got so much better think she’s too busy to come here as much.
She had posted about her Sub Q experience, her hubbie’s becoming the official needle poker for her treatments and how much better she felt using this new infusion protocol. You can always send her a PM or try using the email route.
I hope you feel better and am sorry about having another auto immune illness. CIDP can be more than enough. -
February 20, 2012 at 9:54 pm
I was all set to try sub Q and the insurance co (BC/BS) turned me down. Something about the concentration (I take 25g/week) and my lack of body fat. Dr has written a letter of appeal, but I have read extensively on this subject – sub Q – and almost everyone has remarked on the lack of side effects, the increase in personal freedom (infuse at their own schedule) and the overall i ncrease in patient satisfaction. I also read along the way that a patient might go through a few months sympomatic regression, but that the final outcome is wonderful. I believe – and so does my doctor – that sub Q is the way of the future.
I will post as soon as I start –
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