Is sarcoidosis treatable with prednisone?

[NYC]

Positive diagnosis for sarcoid 2003. Inflamed lymph node in neck was biopsied and found to be granulomous mass. That, coupled with xrays/CT scans showing nodes in lungs and spleen resulted in positive diagnosis. No lung function impairment at the time and none since then. Opted NOT to treat with predisone and the likes. Remission was my conclusion-- until recently, when I began to experience much of the same symptoms described in posts above: foot, ankle, shin, knee aches, rashes, fingernail issues and eyelid inflammations. With growing evidence of toxic triggers for sarcoid, am now enrolled in study of those exposed to 9/11 WTC dust/smoke. Anyone in the vicinity of WTC at that time should consider http://www.wtcexams.org/ Will report on progress...

[Desperate mom]

edj2001 wrote:

FYI, I was diagnosed with Sarcoidosis 10 years ago via lymph node biopsy. Standard treatment is to wait 2 years hoping it will go into remission on its own which btw never happens. Next I was prescribed prednisone for 6 years. My symptoms improved as long as I continued the prednisone however the disease progressed and when I discontinued prednisone I was very ill plus the side effects of prednisone are severe.
I have been on the Marshall Protocol (MP) for over 2 years and my symptoms have either resolved or improved. The MP treats Sarcoidosis and other Th1 diseases as intracellular bacterial infection. The treatment is to reactivate the vitamin D nuclear receptor (VDR) to restore innate immunity so the immune system can eliminate the bacteria. Information on the MP is available at:
http://bacteriality.com/about-the-mp/

I have a teenage daughter with sarcoidosis. She has been on Plaquenil. Where are you seeking treatment with the Marshall Protocol? PLease advise as there has to be something better for her.

[Prednisone Side Effects]

Ive been taking Prednisone for years. This is a great article about the side effects of Prednisone:

http://sideeffectz.com/prednisonesideeffects/

[Red]

I was just diagnosed with sarcoidosis via mediastenoscopy. My dr prescribed 40mg of Prednisone a day. I cannot tell you how completely terrified I am of this drug! I do not like to take drugs--especailly ones with such horrible side effects. Dr tells me I have no choice. Has anyone tried traditional chinese medicine to treat sarcoidosis? There has to be something besides Prednisone.

[Lynnie]

my husband was recently diagnosed with sarcoidosis while doctors were investigating possilble lymphomia. he is on 40mg of pred and still losing weight, since he first got sick he's lost over 15kilos?? so in the dark about this disease? it appears to have effected his lymph nodes, lung test came back good?? any advice

[Katie Lynn]

Rita wrote:

I've just been diagnosed with this disease. Lymph node involvement in my lungs. Also a breast cancer survivor of 5 years. I'm just devasted about this. My joints have been aching for 2 years now and they finally figured it out by accident, of course. The doc wants to start steriods 2x's a day starting next week. I think 20 mg... I've been working through all this but it is so hard... do prednisone always make you gain weight???

Yes, 99 % of the time. Prednisone makes one hungry, and one just eats too much. At the same time, one must exercise more, jog, walk: goal of one hour a day. Steroids should be taken once in the AM every other day: less problems with side effects.
Steroids will help your aching joints, also, will whirlpool, paraffin bath, walking.
Or see Rheumatologist for that problem. Embrace steroids, it will treat the sarcoidosis. Once you are able to quit the steroids, you will lose the weight. Be sure to see an eye doctor, to check for uveitis (due to Sarcoidosis)
Exercise decreases inflammation: the most important thing you can do.

[Katie Lynn]

Lynnie wrote:

my husband was recently diagnosed with sarcoidosis while doctors were investigating possilble lymphomia. he is on 40mg of pred and still losing weight, since he first got sick he's lost over 15kilos?? so in the dark about this disease? it appears to have effected his lymph nodes, lung test came back good?? any advice

Did he have a biopsy of lymph nodes in the mediastinal area? He must go back to oncologist. I am worried he could have lymphoma. If he had an ACE blood test, that would be too high, if he has sarcoidosis. A University doctor told me SARCOIDOSIS is many times labeled as such, but is not.
Be sure he has a sed rate, CRP, PET scan done.
I am sorry to worry you, but weight loss could be hyperthyroidism or cancer, until proven otherwise.
Do not take "no" for an answer. Go to the library at your hospital and read about it.

[Katie Lynn]

Red wrote:

I was just diagnosed with sarcoidosis via mediastenoscopy. My dr prescribed 40mg of Prednisone a day. I cannot tell you how completely terrified I am of this drug! I do not like to take drugs--especailly ones with such horrible side effects. Dr tells me I have no choice. Has anyone tried traditional chinese medicine to treat sarcoidosis? There has to be something besides Prednisone.

Red: Sorry, I am a year late. Do not be afraid of Prednisone. I took it on alternate days, for 10, markedly improved my lungs by CT scan. I am breathing better, was on oxygen 24 h/7 days a week, now only at night.
Eat lots of fruit and raw vegetables. Run, walk, ride a bike every, every day.It is the number one med to take for sacroidosis, much safer than Methotrexate.
Go to a University, to see a top lung doctor. take it every other day, in the AM before 9 AM.

[Rita]

Katie Lynn wrote:

<quoted text>
Yes, 99 % of the time. Prednisone makes one hungry, and one just eats too much. At the same time, one must exercise more, jog, walk: goal of one hour a day. Steroids should be taken once in the AM every other day: less problems with side effects.
Steroids will help your aching joints, also, will whirlpool, paraffin bath, walking.
Or see Rheumatologist for that problem. Embrace steroids, it will treat the sarcoidosis. Once you are able to quit the steroids, you will lose the weight. Be sure to see an eye doctor, to check for uveitis (due to Sarcoidosis)
Exercise decreases inflammation: the most important thing you can do.

Kate: During the time I was on prednisone (about four months) I gained about 15 lbs. face really looked puffy. If you read further down to my last post you will all the problems I had with the steriods and then developed other problems from them. I'm happy to say now I'm off them; also off the plaquinel and now am only taking an anti-inflammatory Lodine 400 mg 1 to 2x day for my joint pain. My lungs have been doing much better and I do see Rhuematologist now which treats me for both as they believe the joint pain is associated with the sarcoidosis. I have been seeing an eye doctor as well. Just scary disease!! Thanks for your encouragement.

[jamel]

I have sarcoidosis 9 years. I blind in my right eye due to m illness. Been off and on prednisone. SOME Days good, some days bad. All I do is pray.

[Edward Taylor]

I have ordered prescription drugs (without a prescription) online from http://inhousegeneric.info about two years ago, and was pleased with the speed and quality of service.
I'm thinking of doing the same thing with my medication. The meds is expensive, but there is a generic version available overseas.
I love the idea of taking responsibility for my own health (or lack of health) and skipping the bureaucracy... to say nothing of having to drive to the doctor, wait in line, yet again, to get a prescription refilled.

[Andy Cole]

If you're seeking help with finding a Doctor to support you with the Marshall Protocol, use the site: http://mpkb.org/home/starting/physician/findi...

I was diagnosed with Sarcoidosis in my lungs 2003, used steroid inhalers for 5 years. Developed calcium deposits surrounding the continuing growth of 'granuloma' in the lungs. Offered prednisone with caution that it might not work so I didn't use it. 2009 I chose the Marshall Protocol. Calcium disolved within 12 months. Still on the MP with bronchial athmatic symptoms. Best to all.

[Higgins]

i wrote:

I have ordered prescription drugs (without a prescription) online from http://inhousegeneric.info about two years ago, and was pleased with the speed and quality of service.
I'm thinking of doing the same thing with my medication. The meds is expensive, but there is a generic version available overseas.
I love the idea of taking responsibility for my own health (or lack of health) and skipping the bureaucracy... to say nothing of having to drive to the doctor, wait in line, yet again, to get a prescription refilled.

http://inhousegeneric.info very clear and informative site, simple ordering process and very fast delivery. All round excellent service - will use again.