8 yrs - now early signs of pulm fibrosis -- treatment suggestions please

• By Gypsy
• Posted October 29, 2009 at 11:19 pm
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HI,

Steroids are antiinflammatory drugs. They have been known to help some with their sarc lesions. They do not offer a cure. Long term, they have some wicked side effects.

I always look for a research/university hosptial for my docs. They are usually the most up to date and mine have been receptive to info I find here.

In the past 8 years, what else have y'all tried? I had some success with Remicade,but then lost my insurance and did well for almost a year. This flare up has been nasty and I am now on Humira and Methatrexate. Too soon to tell but others on this site have had some success. Look up treatments for some discussions.

Good luck and keep us all posted on your progress.
Mary

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• By meghna
• Posted October 30, 2009 at 5:41 am
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Hi:

Thanks for your reply to my post.

First, I pray that your current meds (methatrexate and humira) work well for you. I wish you the best in keeping your health.

As regards my wife, we haven't really tried any meds for the last 8 yrs. We did a regular screening, CT Scan, every 2 yrs. The lymph nodes remained enlarged, but the lungs have been also clear. Also, we moved from New Jersey to Texas 3 years ago -- so our Pulmo also changed etc.

We had a feeling: okay, the nodes are stable, so medication (steroid) is not really needed.

Now, there is some indication of thickening in the lower right lobe. So, we are very concerned. No fibrosis yet. That's why I am thinking if the steroids are going to slow down any possible fibrosis. I fervently hope so.

Is Remicaid a very strong drug? Why do the Insurance doesn't want to approve it? Did anyone have success in reducing the progress of fibrosis using this drug or steroids?

Sorry, too many questions to ask.

Again, all the best with your recovery.

-Meghna

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• By salmonguide
• Posted October 30, 2009 at 10:49 am
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I have very similar circumstances to you. My specialist feels one has to outweigh the risks and benefits of being on such a nasty drug. I was diagnosed in 1997, and likely had it long before that.
Sounds like the findings are very similar, and my specialist feels I should leave as is (no drugs).
Hope it works out well for you and your wife.

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• By juvijedy123
• Posted October 30, 2009 at 2:09 pm
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Hi I am also in Texas. I'm in Austin. I am a nurse and I do know some pretty good doctors/ specialists in Austin. I also know some that I would not go to. I do not have sarc, but my 17 year old might have it. (he has elevated Ace and lysozyme) I also have a good friend with diagnosed neuro sarc. Feel free to call me at 512-848-6866. My name is Judy.

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• By meghna
• Posted October 31, 2009 at 1:30 pm
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It will be so good if I can get some suggestions for an experienced Doctor in Austin/San Antonio area.

Thank you so much.

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• By rascalsmom
• Posted November 2, 2009 at 3:55 pm
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Hi, Meghna - my husband is the one with the sarc in our family, and I hang out here on his behalf. The fibrosis thing is not great. My husband has had sarc since 1997. He had been treated with pred, went off, and things were good for awhile. Had to go back on pred, then things were good again for awhile. Then we moved, and his new doc didn't monitor things so well. He prescribed an inhaler and did PFT (pulmonary function tests) but did nothing to monitor structural changes in the lungs, like fibrosis. The inhaler did nothing (this is well documented in a number of studies - doesn't help lungs, just bronchial symptoms), and doc did not tell us that disease was progressing because he was a jerk. Oh well. The end story is that fibrosis progressed and my husband has lost half his lung capacity - also has COPD due to presence of bullae (think balloons) which compress his good lung tissue, and that just makes things worse.

Does pred prevent this from happening? Not really, but it can certainly slow it down a lot, and we wish we'd consulted a specialist a lot sooner. Pred cannot cure sarc - nothing can, apparently. But the inflammation is what causes most of the damage and pred (as well at methotrexate and other things) can reduce the inflammation.

All of the drugs currently used to moderate the inflammatory response have nasty side effects; you just have to pick the one that works for you. My husband feels much better now that he's been on the pred for a year - he's regained some of his lung function, and that is a help. But his lung structure is permanently damaged; nothing can fix that.

I encourage you to find a doc perhaps at UTHCSA? Google the pulmonary department there and see if they have a clue. Your wife needs someone who understands that sarcoidosis has many faces and presents itself in unique ways in every individual. You need to help her to find as much info as you can so that you can develop a good partnership with her docs - if the docs don't listen, they aren't the right ones.

Also, do a search on Vitamin D on this site so that you understand the health issues related to calcium metabolism in a sarcoid patient. It is counter-intuitive, and our new doc found it helpful to have that information.

Wishing you luck, and I'm sorry this is so long! Rascalsmom

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• By glowgirl
• Posted November 3, 2009 at 2:49 pm
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Megna,
I hope your wife finally found a good pulmnologist in the Texas area. On this site (FSR) they have a link I believe to see if there are docs in your area, but again it's best to do what you did...get an opinion from the sarc soldiers that have actually been to their offices. First hand exp is the best I have found.
I agree with the others, medication is given when the sarc is in flareup or in your wife's case..signs of fibrosis. Meds are meant to slowdown progression of inflammation...not cure disease. The side effects can be a monster to deal with and can take a try and see approach as your wife's response to treatment is the best advocate for wellness.
Let us know the outcome when you can. Praying for you.
glowgirl

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