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bboxer (@bboxer)

Pulmonary Sarcoidosis: How are you dealing with it?

Lung Health | Last Active: Aug 10, 2020 | Replies (106)

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@colleenyoung

Hi @bboxer,
I’d like to introduce you to several members who are discussing sarcoidosis (pulmonary and neuro). Please meet @josephene @irene5 @chesneydell1965 @rayrachel @rickys. You can read their discussions here:

– Sarcoidosis in the Autoimmune Diseases group http://mayocl.in/2ixthUD
– Neurosarcoidosis in the Brain & Nervous System group http://mayocl.in/2hot44e

bboxer, You ask great questions. Would you get us started off by telling us what you know about your prognosis and how you manage the pain you experience?

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Replies to "Hi @bboxer, I'd like to introduce you to several members who are discussing sarcoidosis (pulmonary and..."

I’ve been seeing my local pulmonologist since being diagnosed. ~ 10 yrs ago. All he’s really been doing for me for the last few years is readministering some breathing tests to see if there’s been any improvement or worsening (definitely the latter!) and renewing my script for prednisone which I’m doing fairly well with but experiencing some if not all the usual side effects. I had been going to U of F Shands Med Ctr semi-annually for a 2nd opinion for a couple of years per his recommendation. Shands switched me from prednisone to methotrexate and the only other thing they did was initiate some dialogue about possibly receiving a lung transplant. After doing some of my own research and talking to a few post transplant patients I decided it definitely wasn’t an option my wife and I wanted to pursue if at all possible. As the saying goes “the treatment seemed worse than the ailment! I am now back on prednisone because, apparently erroneously according to the folks at Mayo, was informed that I had exceeded my lifetime allotment of methotrexate.

I’ve had a half a dozen or so appointments with all kinds of specialists @ Mayo during the last 2 months and a couple more in January when I expect to get a prognosis. As far as pain management is concerned, which is rather severe at times, I’m taking very small dose of hydrocodone on an as needed basis which has been very, very effective. I’m also pursuing some herbal, homeopathic remedies.
The long and short of it is, the sarcoid can be rather debilitating at times but I’m learning how to deal with it so it doesn’t always control my life. It’s had its affects on my marriage but my wife is usually pretty patient with me and very supportive even though we’re now separated but reconciling.

btw, our experience at Mayo has been nothing short of FANTASTIC!!!

I’m happy to hear of you and your wife, and to know the marriage streighn is real.
As I want to beat the husband some days.
He also has neurosarcoidosis his mind isn’t what it once was , this is very hard for him he is very old school so he can’t always do the things he once did for me, and for him to except the face I have to be husband wife nurse and bad guy is hard on him, then rolls down hill to me uhg.
I’m scared of what each day brings if I could take it away I would , I wish something more could be done .
Very debilitating normal doctors treat him as tho he was a hot potatoes they know nothing there for pretend it isn’t happening.
We are lucky to have a great neurologist who listens and is helping so far
Thanks you for writing something back I thought I was falling on deaf ears here too
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