Well, I have sarcoidosis folks - Lung Conditions C...

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Well, I have sarcoidosis folks

Missbrenda21 profile image
12 Replies

I had my biopsy surgery and just got the results. It is pulmonary sarcoidosis. I have been told that my pulmonologist will be calling me to start treatment. Most likely - steroids :(

Steroids and organ transplants are the only treatment options

I am 90% certain I will have my breast implants removed. Of course doctors won’t draw the line to connect implants with autoimmune disease but there is enough info and personal accounts on the internet that I am also convinced that they have had at a least a little to do with my illness.

Thank you all for taking this journey with me! It’s gonna be a ride for sure

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Missbrenda21
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12 Replies
sassy59 profile image
sassy59

Hi Missbrenda, sorry to hear of your diagnosis and I hope you get the best possible treatment. Pete was diagnosed with sarcoidosis in 1991 and steroids were the only treatment available at that time it seems. He’s doing well and living his life as best he can. Wishing you well. Xxxx

CDPO16 profile image
CDPO16

Wishing you well Missbrenda.

Alberta56 profile image
Alberta56

Best wishes for successful treatment. Pete's result sounds encouraging.

pegbl profile image
pegbl

Hope all goes well for you xxx

At least you know now what you are dealing with. The amazing nurse who looked after me all through my two pace maker procedures and is in charge of the device clinic has sarcoidosis. She is a single mother in her mid thirties and works full time. Her treatment keeps her on top of things. I hope that you will soon feel the benefit of yours.

peege profile image
peege

Thinking of you Missbrenda21

ck101 profile image
ck101

Sorry to hear that, wishing you the best. A lot on the web about symptoms resolving after removal so fingers crossed 🤞

Mrbojangles profile image
Mrbojangles

Sorry to hear about your diagnosis.Stay strong and positive and if you’re going on steroids lock the fridge as i ballooned 8 kilos in 3 months whist on prednisolone.

Xxx

Ce62lrk profile image
Ce62lrk

Deterioration in IPF following vaccine.

Yes a drastic effect. I was diagnosed with IPF 6 years ago, but it had no impact on my life and did not get any worse for all that time. No one even knew I had it, such was the normality of my life. I was taking long walks and living g life as normal until 14 days after receiving the vaccine when I developed a cold and over ight my breathIng just deteriorated to such an extent that I get very breathless just walking around the house and now need a stair lift. I am now on pirfenidone, although I am currently waiting g to restart it after being hospitalised a week ago with a bad chest infection. This post is in response to a question that was asked about anyone experiencing deteriorationfollowing covid vaccine. I cannot now see that post, which Iwas replyi g to. Any help in locating the original post would be appreciated

Dedalus profile image
Dedalus

All best wishes going forward x

HighGables profile image
HighGables

Wishing you successful treatment Missb. Let us know how you get on.Jax🐶x

watergazer profile image
watergazer

Wishing you all the best missbrenda21 x

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