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Life With Lupus

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#1

After informing me that I was far and away the worst of his patients regarding lung function, my pulmonary doctor - now as frustrated as I concerning the future approach to treating my interstitial lung disease - informed me that it might be time to simply fight the symptoms rather than seek a cure. I have only 30 percent of my lung capacity remaining due to the ravaging impact of the rare interstitial lung disease, despite numerous attempts by some caring doctors to find ways to battle the crippling problem.

Various chemo drugs failed to show any improvement in my condition. I also suffer from lupus, which they say caused the interstitial lung disease.

Now my doctors, including those in Vanderbilt University's palliative care department (hope I spelled that correctly), have encouraged me to up prednisone from 15MG to 30 MG to hopefully help with difficulty of breathing. They also have me taking morphine tablets twice daily and oxycodone (partly for

back pain caused by large volumes of prednisone), which they say can sometimes improve the breathing.

I hope this works because this is getting old in a hurry.

Hope everyone else is seeing improvement with whatever ails them.

Thomas Franklin


#2

I'm taking 40mg of predizone a day does it cause back pain


#3

I also have lung disease due to lupus. I hope they can find the combination to help you feel better. I will be thinking of you.


#4

Ty purplebutterfly taking it one day at a time. I've worked since I was 14 and was a truck driver for 20 years and now I cant go outside with out fear of breaking out its hard to keep me in the house but its nice to go out even to the store is a good day for me


#5

I do hope that a medication change will make you feel better. Your attitude seems to be holding to the positive side, which will help on its own. I wish the best for you!

Big hugs for you!


#6


i sometimes take prednisone when i have a flare up

I'm taking 40mg of predizone a day does it cause back pain


#7


it helps my back problems that i have


Steven Tatlow said:

I'm taking 40mg of predizone a day does it cause back pain


#8

Prayers for you. Yes…great attitude. I’m a little new to this. My brother also has SLE.


#9

how do i get into regular forums to talk in, or is this how we do it, just talk back and forth like this, wich i kind of like

Prayers for you. Yes...great attitude. I'm a little new to this. My brother also has SLE.

#10

just like you're doing, we talk/comment back and forth



catspaw1955 said:

how do i get into regular forums to talk in, or is this how we do it, just talk back and forth like this, wich i kind of like

Prayers for you. Yes...great attitude. I'm a little new to this. My brother also has SLE.

#11

I have interstitial lung disease as well … i have an appointment on 10/23 with a new pulmanologist because the one that’s been seeing me the last couple of years since becoming ill has been ridiculously , visibly frustrated with my situation. . The last few times i saw him at 6-8week check ups he would get so flustered that i still always suffer from chronic plursily, shortness of breath, cough despite being on his pic of inhalers…it was weird. . I did make it clear to him that cellcept and cytoxin did help relieve plursily and in turn helped me breath easier but that wasn’t good enough for him or something and he just kept saying “you need to tell your rheumatologist” and “so i don’t know what else i can do for you” really? ?? I told my primary and rheumatologist what my pulmonologist was saying and they both agreed it was time to leave him so my primary order me in home oxygen and put me on “Breo” once a day inhaler. Im still struggling everyday with my lungs but having oxygen has given me a quality of life especially on my bad days and can actually walk,talk, eat or just get of of bed where as i couldn’t before. . My rhuemy wants to put me on "orencia "asap but needed a clearer more precise diagnosis of my intestinal lung disease since my old pulmanologist has been very vage in treating and diagnosing me …She won’t put me on any more heavy immunosuppressives or chemo therapy until then. . When i went to John’s Hopkins in January the specialist wanted me to have a lung (and bone marrow, liver) biopsy but all my drs at home didn’t want to yet. Im very interested to see what my new pulmanologist wants to do with me??? My rheumy recommended him ,she said he’s very smart and definitely cares about his patients.lm having a new CT of my lungs on Tuesday .i know i have nodules and a fare amount of thickinand scaring in my lower right lobe since January so we’ll see what it looks like now ???


#12

Oh, you both make my problems seem tiny. I hope the new meds help with the pain, and breathing, Thomas. And dawn celest, there are Pulmonologists who specialize in autoimmune illnesses, I hope your new one does,