Treatment of Sarcodois

[carmen747]

I've recently been diagnosed with Sarcoid and am confused as to what treatment I should pursue.

I have seen a pulm dr and had a PFT where my levels are close to 100..blood oxygen good as well. I can take flight of stairs two at a time with no problem, go 30 mins at gym on ellipitcal no problems. The problems are mostly at night, some wheezing, some cough, a few months ago it was waking me but this seems to be going down in intensity. At times during the day, I can feel something if I make a quick movement.

My eyes checks out ok, brain mri ok, cardio says I'm fine. I'm 41 years old and have never had a lung problem before.

Two summers ago I took two steriod nasal inhalers with antibiotics and got esophagus candia. It was tough to shake.

My fear is if I start taking 20mg of prednisone for a month I will then have two problems. My immune system will be weaker and got forbid I end up getting the swine flu.

I went for a second opinion with a sarcoid dr and his idea was to let things be. His reasoning was that I am able to function fairly well.

If I do choose the steriods, the dr will have me on myclex 5 times a day with 4 accidolphous pills as well as prevention. I've talled to numerous drs. gastro, pharms and they feel that the candida will return.

Was it the course i should take. Do I treat? Is there an alternative to predisone? What do you think of herbals (reservatrol, etc). I feel as if I have been painted into a corner with this diagnosis. All the drs are unwilling to commit are firm opinion as well.

My ACE 3 weeks ago was 7...biopsy confirmed. Recent ACE was 79. First reading might have been wrong?

Thanks for your help.

Do you know of any sarcoid specialists in NJ or NY?

[David Tinkelman, M.D.]

That the Sarcoid is limited to your lungs and does not involve your heart, eyes or central nervous system, is great news.  Equally, a reason for you to be optimistic is the report of normal pulmonary function and normal blood gases.  Other diseases, most notably Berryliosis (but also Hypersensitivity Pneumonitis) can mimic Sarcoid and should be ruled out.

There is a wide range of severity of pulmonary sarcoid, based on radiologic (Chest X-ray and CT Scanning of lungs) and physiologic parameters.  The extent and prognostic significance of radiograph abnormalities is the basis for conventional Staging of Disease (stages 0-IV).  These stages do not correspond to the chronologic progression of disease, but do correlate with likelihood of future radiographic and symptomatic disease resolution.  To some extent, these stages serve as the basis for decisions regarding therapy, steroid and other.  Your pulmonary specialist would be most familiar with this staging.  Stage I disease is the most common X-ray presentation, and the majority (50-90%) of persons will demonstrate spontaneous resolution.  You might want to ask the specialist about the stage of your disease and why treatment is or is not indicated for you..

Studies examining outcome at greater than 2 years suggest no significant benefit from corticosteroid therapy in asymptomatic sarcoidosis patients with more advanced forms of pulmonary involvement. In a British Thoracic Society study, patients not meeting the indications for immediate therapy were observed for 6 months. At that point, using a strategy of alternate assignment, they were designated either to receive long-term corticosteroid therapy or to receive corticosteroids only as indicated symptomatically. Analysis of data at 2 years suggested that the long-term therapy group experienced only mild improvements in pulmonary function, and reported numerous steroid side effects.

A review of the American Thoracic Society Consensus Statement, on the management of pulmonary sarcoid would suggest that patients with acute pulmonary sarcoidosis (stage I disease with isolated bilateral hilar adenopathy – lymph node enlargement) not be treated because of the generally excellent outcome in the absence of therapy and the potential that corticosteroids may be detrimental if used in these acute cases

Based on the available literature and a survey of clinical practice in the United States and abroad, it is generally recommended that, whenever possible, corticosteroids should not be initiated until after a period of clinical observation of 3 to 6 months, unless there is a life- or sight-threatening indication to treat immediately.  You state that you, “went for a second opinion with a sarcoid dr and his idea was to let things be.” This recommendation is consistent with the preceding.  

Unless there is a strong recommendation in favor of steroid therapy (vital organ involvement or Stage III or IV, especially with evidence of pulmonary function impairment or blood gas abnormalities) steroids and the side effects you describe, should be avoided.  In effect, you would do well to follow the recommendation of a specialist (in Sarcoid)  with vast experience and knowledge of the disease.

Hope this helps.

Good luck

[carmen747]

Thank you for your response.

One last question. You had mentioned berrylium as a possible cause.
Last year when I was driving my truck started to make a terrible noise like something was the matter with it's brakes. I drove around for a while hoping it would stop. Eventually I pulled over and in the dark stuck my hand inside the rim. Immediately I felt a sharp ***** on my finger.

At first I thought I had touched hot metal, then I thought maybe a bug had bit me. When I looked at my hand in the light, there was what looked like a sliver in it. I could tell if it was organic or metal.

My finger over the next 24 hours got extremely hot and tender. I had no idea what had happened to me. To this day I don't know if its was a bug bite or a metal sliver. I started getting spots on my palms and swelling on both hands/fingers that lasted 2-3 months.
My WBC dipped to 3300 around this time then bounced back to normal 4300. Then around June I noticed problems with my lungs.

Could this had possibly been some sort of exposure to berrylium. From brake pads? The little amount that touched me...the sliver. Could it has caused some sort of allergic reaction in my body?


thanks again
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