Sarcoidosis

[KevinP]

I am a 51 year old male. I was diagnosed with sarcoid 2 yrs ago. I have the classic pulmonary variety including shortness of breath (especially w/ exertion) persistent cough and the formation of mucus in my throat while eating. I have been seeing a pulmonologist and an ENT on a regular basis. I am currently using Asmanex (2 puffs a day). The Asmanex has not worked as well as I had hoped. I now have a perscription for Advair that I have not filled yet. I understand that the most common treatment for this is prednezone. I hear nothing but bad things about prednezone so I have trying not to take it but I am afraid I may to resort to that soon.

I have several questions:
-how bad is prednezone? will it really help?
-has anybody tried Advair?
-I am overweight and would like to exercise to try to lose weight but am afraid the I will get to out of breath while working out. what kind of exercise is safe to do?
- has anyone else had a problem with clear mucus while eating? ( I have had my throat scoped and there is no tumors in my throat)
- Is it possible that the sarcoid has caused me to contract garden variety Asthma?
- has anybody had success with Asmanex?
- I was told I have nodules in my lungs, how often should I have a chest x-ray?
- can this condition get better all of a sudden?
- Does anybody know a pulmonologist in the Central New York area that specializes in sarcoid?

Thanks for your input

[Davy9]

The steroid found in Advair is a topical steroid intended to have its effects locally and not systemically. It is not too much different than a steroid cream you would put on your skin. It should have minimal, if any adverse side effects.

Ask your doctor about working with a physical therapist and nutritionist to lose weight. They can help you define a safe and effective plan for this purpose.

Nodules are usually checked every 6 months to look for changes. Some may check them only on a yearly basis.

I don't know about any docs in your area and you should be able to learn more about Sarcoid from the sarcoid foundation.

[KevinP]

Thank you for the input. Can you tell how effective prednazone would be? Also, how bad are the side affects?

[syoung]

Please stay on top of your x-rays. I used Advair and other inhalants for 2 years, nothing seem to help with my shortness of breath or chronic cough. Within those two years I had pneumonia four times. Between the forth time and the time it took for my lung to collaps it was six months. I had my entire left lung removed. it was only then I was diagnosed with Sarcoidosis, not asthma as my Doctor suspected.

I started taking prednezone when my symptom did not go away. It will make you gain weight and give you that sort of pie face effect. On the other hand it will help with the symptoms. I decided for me, I could handle the coughing and wheezing after I gained 60 lbs in eight months.

I go to the gym and do toning excercises and walk for 30 minutes on the treadmill. I have lost 20 lbs in two months. Good luck to you.

By the way, I am a 44 year old female. I check my x-rays every three months, I only have one lung as a result of the Sarcoidosis I cannot afford to lose another one.

[mikeinmich]

I was on prednisone for 1 year, it helped my symptoms but then the side effects got to be to much. I had the mood swings, bad acne, weight gain, heart burn so bad i couldn't sleep and no meds would help. I just switched pulmonologist, he's not sure meds work that well for sarcoidosis, instead he has started me on pulmonary rehab. I go to my local hospital 3 times a week to work out while being monitored for my oxygen level and heart. It seems to be helping with my shortness of breathe. You may want to discuss this with your doctor.

Good Luck,
Mike