Re: Full Blown sarc

[Guest guest]

? Do most people end up with like a

"full blown" sarcoid over 10 years or so? Just wondering..... Debbie T.

Debbie,

We are the 5% of the 20% that end up with Chronic Sarcoidosis. The stats (and we know that they are wrong) is that 80% of all the people that get sarcoidosis have a self-remitting, resolving course over a 2-3 yr period.

That other 20% has a chronic course, and generally have pulmonary or respiratory infections-- but it's an interference in their life-- not a total disabler.

For the 5% of us that the disease goes systemic or multi-system --hearts, lungs, eyes, brain (neuro), vasculitis with sarcoid induced arthritis-- then yeah- it's a problem, and could be a huge problem.

But when you look at the stats of 100,000 people with the disease, and 20,000 have a chronic problem, and 5,000 have it become life threatening-- well heck, we should be playing the lottery.

One thing that they are finding is that for those of us that started out with pulmonary or ocular (eyes) sarcoidosis-- is that if we were treated with prednisone, and then they take the prednisone away-- that if the sarc comes back, it will go systemic. So what we're up against is that if it was bad enough to treat initially, then we need some kind of continuing treatment for life.

Stopping the prednisone is a good idea, especially if you've been on it for a couple of years, but instead of going a couple of years without treatment, the studies are saying put the patient on a steroid sparing immunosuppresant. Ie. Imuran, Arava, Methotrexate, Plaquenil.

For me, I truly believe that for the many years I was getting a full body massage that focused on my lymphnodes-- that it had kept the sarcoidosis at bay. Once I had to stop getting my massages, it was less than 10 months later that this had gone fully systemic. And that puts me where I'm at today.

I personally think that my lymph system had the sarcoid buildup, but as long as we "cleared" it weekly-- it didn't have the chance to settle in. Now, I end up with lymphnodes that feel and look like marbles for the week prior to my Remicade infusions. Within 1-2 hrs following the infusion, the swelling goes way down. I know that I'm one of the lucky ones that this drug is helping-- and I know that it can be life threatening if I get an infection-- but for now, it's the answer for me.

Love to you,

Tracie

NS Co-owner/moderator

[Guest guest]

>

> In a message dated 12/28/06 2:51:35 AM Pacific Standard Time,

> rozebudz36@... writes:

>

>

> > ? Do most people end up with like a

> > " full blown " sarcoid over 10 years or so? Just wondering.....

Debbie T.

> >

Debbie,

I can only speak from my own experience...I've had various symptoms

over the past 14+ yrs including neuropathies, visual disturbances,

dermal granulomas...yada yada yada. Docs hypothesized everything

from Guillain-Barre to MS to depression until one day, a very bright

neuro sat down & reviewed my history. He sent me for blood

work...bingo...elevated ACE! He said " I think you have sarcoid " ...I

replied " what the heck is sarcoid? " He mentioned granulomas so I

showed him the 'bumps' on my head & hands. Off for a biopsy, then the

longest wait of my life...the rest is history.

Now to answer your question...sort of...there have always been

similiar elements...for me anyway, including neuro, occular, &

dermal...but the presentation varies. In my mind, the sarc has not

spread as the organ involvement has been relatively

consistant...simply variations on a similiar theme if you will.

However, my body no longer recovers completely from the flares,

giving the impression that the sarc is spreading. One plausible

explaination is the granulomas scars the affected tissue which

diminishes the function of the organ. Bottom line, organs which were

minimally affected years before, and probably never given a second

thought due to the low level of involvement, now become problematic

with the long term accrual of damaged tissue.

Please know that this is only my opinion, based upon nothing more

than what I have learned from the school of hard knocks.

Peace & happiness to you, Tony