sarcoidosis

[Elli784]

I was diagnosed with Sarcoidosis in Nov.  I have quite extensive lung involvement and we are trying to make sure that there is no heart involvement. During Nov./ Dec. I was having leg, hand and arm cramps that basically locked my limb so it couldn't move.  I had it checked out but no one could tell me what was wrong.

I have been on prednisone now since Nov. and we tried to cut the dose from 40 to 20 without luck and minimal response from the sardoid.  I am currently on 30 mg of prednisone and I am coughing again.  I have so many questions about the disease and no on has been able to answer them. I have looked at other pictures of xrays of Sarcoidosis and I haven't seen one as dense as mine but my Doctors say that mine's not bad... They want me to take vitamin D and Calcium but after I started I began getting leg and hand/ arm cramps again...   Now I am confused about my care...

I also work with high risk patients who have respiratory infections (i.e tb, H1N1, pna) and I have been told that I can work with them and that I am not at risk, but others have told me DO NOT because I am susceptible to getting whatever they have. Now who do I believe.

I haven't had any ACE tests (no one ordered them) but my Pulmonary Function Test flows that I am only at 59% on lung capacity.  I am just needing some good advise from people who have been there...

thanks.

[hava]

Take the turmeric,curcumin and garlic as advised by nathlth. Also do kapalbhati and anulom vilom pranayam up to 30 minutes each ,twice a day.
After 3 months, you may review your dependence on predisone, as you will start to feel the benefit of pranayam.
September 21, 2011

[nathlth]

I was on prednesone years ago in the hospital via IV and the medication caused 20 side effects.   Recently I've had a flair up, and I'm taking tumeric and curcumin, garlic, antioxidants capsules/tablets.   I would see a naturopathic doctor in your area.    

[pammac1]

I was just diagnosed with Sarcoidosis this past Dec 8, 2009 after having an "open surgical lung biospy, 3 days in hospital, very painful procedure.  Still recovering.  Now I'm on prednisone 60mg a day, makes me feel tired, no energy, dizzy like.  Can't work, feel too weird, alot of anxiety too.  I saw a pulmonologist, which is who you should be seeing.  I've had ACE levels and PFT's also.  They say prednisone does decrease you're immune system, I've been staying away from crowds, like big stores.  My doc placed me on 60mg right away, maybe this is the dose you should be on.  Also did a Echocardiogram, thank god no heart involvement (saw cardiologist)  also saw opthomologist to see if my eyes were ok. This doc said that if it's in the lungs it never really goes to the eyes, but I would check anyway.  As I stated I would see a lung specialist, Pulmonologist.  My doc seems to listen and have everything under control, he says this is curable, I will get better.  So maybe you need to see the right doc.  I'm going to tell you that this came on suddenly for me.  I was jogging with my dog one day and the next day felt really weird, like a bad cold coming on.  Then it did, but I felt a burning in my chest, very odd, saw doctors right away.  Then it was Chest X-ray, emergency Cat Scan, emergency visit to Pulmonologist, Hospital for Bronch, Hospital for lung biopsy.  It's been quite a trip, lots of pain, mental and physical, but I was also feeling sickly too.  I don't smoke, take care of myself, exercise (run, ski, bike), now I'm just trying to walk 45 minutes to an hour a day while I recover, and that has been an effort.  Good luck to you, you need some better answers.