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Old 02-18-2011, 08:17 AM   #1
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Need steroid advice for Interstitial Lung Disease

Hi,

I was diagnosed with a rare form of ILD called Granulomatous Interstitial Lung Disease caused by Common Variable Immune Deficiency. I start on high dose Prednisone today, 40 mgs for 3 months. I need anyones tips and tricks about the steroids please. I plan on trying to cut back on salt as much as possible. I need to start an exercise routine asap as well as I know it will help with muscle and bone loss and may help the aggravation caused by the meds. Thank you in advance.

 
Old 02-18-2011, 03:08 PM   #2
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Re: Need steroid advice for Interstitial Lung Disease

I was also diagnosed with the same ILD. I tried the steriod treatment 2 weeks to no avail, I started swelling in the ankles and was uncomfortable. But I'm sure others it will help. But now I'm scheduled to have a lung biopsy done. Keep me posted with how you are coming along.
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Old 02-20-2011, 06:03 PM   #3
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Re: Need steroid advice for Interstitial Lung Disease

Hi Kelli - I have been taking prednisone for about 10 years for COPD and joint pain due to arthritis. When I first started taking this steroid I was at a higher dose than I am currently taking. I believe I started with 60 mg. and slowly tapered down once my lungs improved. I'm currently on 4mg. of prednisone and have been trying for almost a year to get off the drug completely. I like to call Prednisone the "devil drug"! It has the most amazing anti-inflammatory properties and has reduced my joint pain considerably but it has a price. The price that I have paid for 10 years use is extremely severe osteoporosis and weight gain. I already had some osteoporosis before starting the steroids but it got worse because of them. Most steroids tend to put some weight on folks and you are smart to start thinking about a healthy eating plan and exercise regiment. In the end it really is all about what you put in your mouth.

My advice to you would be to ask your doctor for guidance on the correct vitamins and minerals to take to help fight the osteo risk. How long does the doctor think you'll need to stay on the current dose and will you be tapering down at some point? I'm curious to hear what the plan is. Take care - BrittleBones

 
Old 02-21-2011, 06:20 AM   #4
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Re: Need steroid advice for Interstitial Lung Disease

Quote:
Originally Posted by BrittleBones View Post
Hi Kelli - I have been taking prednisone for about 10 years for COPD and joint pain due to arthritis. When I first started taking this steroid I was at a higher dose than I am currently taking. I believe I started with 60 mg. and slowly tapered down once my lungs improved. I'm currently on 4mg. of prednisone and have been trying for almost a year to get off the drug completely. I like to call Prednisone the "devil drug"! It has the most amazing anti-inflammatory properties and has reduced my joint pain considerably but it has a price. The price that I have paid for 10 years use is extremely severe osteoporosis and weight gain. I already had some osteoporosis before starting the steroids but it got worse because of them. Most steroids tend to put some weight on folks and you are smart to start thinking about a healthy eating plan and exercise regiment. In the end it really is all about what you put in your mouth.

My advice to you would be to ask your doctor for guidance on the correct vitamins and minerals to take to help fight the osteo risk. How long does the doctor think you'll need to stay on the current dose and will you be tapering down at some point? I'm curious to hear what the plan is. Take care - BrittleBones
Doc thinks I will be on them 3 months with tapering off. I need to get back to work asap as the Long term disability plan I've been paying into turns out to be junk so I can't afford to stay out for treatment. I'm only giving them one shot with this particular drug as there are other options (if the nodes come back). I have an immune deficiency (which is what caused the lung disease) so the steroids will wipe out my immune system. They gave me calcium + vit D, multi vitamin, osteoporosis meds and still need to talk to local doc about sleep disturbances and lasix and want to talk to a dietitian about the right foods to eat. I really tried to go out and buy low sodium food but good lord it was difficult as there were virtually none. Yes they say low sodium but they really are not. Thank you for the advice

 
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