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Lung Pain

By donnakay7704
Posted July 3, 2009 at 10:25 pm · 7 replies
In Living with sarcoidosis
Shared with the public

What can be done besides low dose prednisone to help with the inflammation? I was diagnosed in 1995 and at that time I was told that prednisone was the only option, but my condition was not bad and didn't need treatment at that time and the side effects of the meds were bad.

Since then, my sarcoidosis has severely damaged my lungs and I am in pain everyday. It is mostly in my back and I am told that it is pleuritic.

Any information would be greatly appreciated!

Thanks!!

Explore topics in this discussion:

Anxiety Pulmonary embolism Plaquenil Pain Prednisone Sarcoidosis

7 replies

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By ellj
Posted July 4, 2009 at 10:03 am
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You need to breathe. If your lungs are now severely damaged consider which is worse-pred or further lung damage.
I'd personally get on pred. if you are at a serious stage without any other drug intervention. Sounds like a high dose rather than low dose is needed to try to halt your progression.
Plaquenil has shown some evidence in treatment of lung and skin sarc. That takes 6 months to begin working and still, is usually used with pred.
Are you seeing a pulm who knows sarc regularly? Have you been on any treatment since 95?

By Angelfox
Posted July 4, 2009 at 10:51 am
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Donna....it sounds as though you need to be on the pred right away before any more damage can be done. Believe me you will feel so much better even with side effects. I am off the pred now awaiting a bronchoscopy and I have the terrible cough back and fatigue that I did not have while on the pred. I will say that we all have to decide for ourselves and I wish you good health in whatever you decide. God bless!

By donnakay7704
Posted July 4, 2009 at 3:27 pm
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Recently, I took the 7 day pack of pred then now I am on 5 mg per day. I am still in pain, mostly when I breathe cold air or after lying down and also being around cigarette smoke kills me ( I do not smoke).

Yes, I have been to 3 lung specialists over the years. The first one offered no help, neither did the second.
The third one ran a bunch of tests and then said yep well theres nothing we can do, put me on round of pred and sent me on my way.

I am seeing an internist now, because I have other complications... hypothyroid, anxiety, did I mention I had a pulmonary embolism when I was 34?

Thanks for the information, I am glad I signed up for this group. Maybe I do need to go on the higher dose. I am already overweight from my thryoid and the swelling from the pred is awful. But you are right, I need to breathe!

Donna

By rarity
Posted July 4, 2009 at 6:23 pm
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I have always been of the opinion that pred right away stops this very problem severe symptoms later on. You need to be on high dose pred just as ellj says too. Get to someone who knows this disease before you are on the sarc train forever. good luck and God bless

By Cher_SarcMil
Posted July 5, 2009 at 10:55 pm
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Yes, Prednisone gets a bad wrap. The side effects stink but vary in many.

Regardless, it's a life saver in certain sarc situations... it saved my vision last fall and I will take it again once I wean if I have to.

By ellj
Posted July 6, 2009 at 7:54 am
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Really ask if your doc has sarc knowledge and treats other sarc patients. The pred pack isn't normally used/ And 5 mg for "severely damaged lungs" is not the usual protocol dose. There are also other drugs that have shown some hope when used with pred, like plaquenil and others.

By evesmom1021
Posted July 7, 2009 at 11:19 am
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5mg sounds REALLY low. I have pleuritic pain in my lungs and i'm on 30mgs currently.

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Help and information from FSR

Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.