Is sarcoidosis treatable with prednisone?

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Q My son was just recently diagnosed with sarcoidosis and is being treated with prednisone. Full Story
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NYC

Brooklyn, NY

#23 Sep 16, 2010
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

Ashland, KY

#24 Jun 2, 2011
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

Seattle, WA

#25 Jun 24, 2011
Ive been taking Prednisone for years. This is a great article about the side effects of Prednisone:

http://sideeffectz.com/prednisonesideeffects/
Red

Zephyrhills, FL

#26 Oct 2, 2011
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

Brisbane, Australia

#27 Oct 14, 2012
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

Colorado Springs, CO

#29 Oct 20, 2012
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

Colorado Springs, CO

#30 Oct 20, 2012
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

Colorado Springs, CO

#31 Oct 20, 2012
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

Haddonfield, NJ

#32 Oct 22, 2012
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

Ossining, NY

#33 Oct 25, 2012
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

France

#35 Feb 4, 2013
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

Dawson Creek, Canada

#36 Feb 5, 2013
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

Sweden

#37 Apr 19, 2013
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.
Zane

Minsk, Belarus

#38 May 28, 2013
I have used http://qgeneric.info/#tdes for about 3 years and find their products to be reliable and speedily delivered. The Support team are very promt and helpful in solving any issues that arise,caused by my errors not the company's. I was a little sceptical initially about buying generic products rather than brand names. However, the Mens' Health products I have bought have been equally as efficatious as the brand names at a fraction of the cost.
kris

United States

#39 May 28, 2013
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
My husband was also diagnosed by a biopsy where the doctors suspected lymphoma. He took the prednisone for several months and evidently it went away. This was in 2003. The doctor that treated him moved and his general physician has not even recommended another specialist for him to see. I hope your husband is as fortunate as we were.
kris

United States

#40 May 28, 2013
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
Also, my husbands lymph nodes were enlarged too as well as his spleen. When the doctors discovered it was sarcoidosis instead of lymphoma, they said they would take that diagnosis any day over over lymphoma.
Louise

Charleston, WV

#41 Jul 16, 2013
I was diagnosed with sarcoidosis approximately 15 years ago, it never was active but the doctor kept me coming to him. I thought I had pneumonia about 4years ago, went to health plus, was sent to a local emergency room and the doctor on call prescribed an antibiotic and I was beginning to feel better although to this day I don't believe I even had pneumonia. I had a prescheduled appointment with the lung doctor, I told him about the visit to the emergency room and that I was on an antibiotic but he insisted I take another antibiotic which was levaquin. My life as I knew it has changed until I don't feel I am the same person. I had a violent reaction to the levaquin, it crippled me until I couldn't lift my arms up because my shoulders hurt so bad, I was stiff, bent over, couldn't walk unaided for days, went back to this doctor and he said I had rheumatoid arthritis. I went to a rheumatologist, she did every kind of test there is and she said I did not have it so I went back to the lung doctor and he still insisted I had ra so my husband took me to the Cleveland clinic and a ra doctor there said I had it and I was with her approximately one half hour, she consulted with the lung doctor by fax and they both scared me so bad I went to another ra doctor and he put me on methotrexate. The lung doctor began giving me predisone so I could move my hands and it helped with my shoulders but not much, the ra doctor I was seeing said if I didn't' take the methotrexate I would end up with deformed bones. My life has beena living hell since all this began, I had told all these doctors I knew I did not have ra, I stopped taking the medications and I will not go to another doctor except a dentist, eye doctor, and I do see a dermologist because of the thin skin I developed from those meds and for skin cancer that came on my lower legs since all this began. I tell all people I can about this life changing event hoping I can warn them about these two medications and the extent a doctor will go to even though they know they have misdiagnosed. This all began on July 24, 2009, I am now 67 years old and look like I am much older. I lost most of my hair, have a full beard which I use hair remover on that, have had so much trouble with my skin that I can't wear short sleeves or short pants, I have to pat my skin dry after showering because it peels off, if I barely bump my legs, hands, or arms I bleed under my skin and it leaves ugly red splotches that takes for weeks to heal, all this has left with with severe depression and I won't leave my house except for emergency purposes. My husband does all the shopping, anything that requires going out. I am so bitter over all this and I feel like I can't wait until my turn to die. All because of one morally bankrupt doctor.
Cheryl B

Waynesboro, VA

#42 Jul 18, 2013
I too am on pred for sarcoidosis. I am suppose to be on it for 6 months, 10 mg, but am considering going off of it now. It has helped me alot, as I do not haved to use my inhaler anymore, but just am experiencing high spikes in blood sugar. The pred just scares me almost as much as the sarcoid.
Louise

Charleston, WV

#43 Jul 18, 2013
Thank you for your comment. Since you're on predisone and you said you're going off it, is a doctor weaning you off? You may already know this but just in case this is very, so very important. You need to be weaned off. Google predisone and read about it and the harm it can cause if you go off cold turkey. If I had it to do all over again I would never put predisone in any form in my body. Just yesterday I put a ring on my finger and it left a red mark, I switched rings, while I was in a store I reached across my body for something (can't remember what) and the ring on my right hand scraped across the back of my left hand and peeled the skin off and I now have a large tear to try to heal. I never would use the inhaler this "doctor" prescribed for me because I knew they are very addictive and I just felt like I didn't need it and now I know I was right. Your body will talk for you. I pray you'll be okay.
Loise

Elkview, WV

#46 Aug 20, 2013
I was diagnosed with sarcoidosis approximately 15 years ago. I'm now 67 years of age and I've been through hell because of the lung doctor I was referred to so don't take the first opinion, nor the second. I'll just say predisone is the worst drug I've ever taken, I believe doctors misuse it as a cure all, and the long term effects are devastating. I could write a book about the horridness of this drug and what it can do to a persons complete physical and mental health. I wish someone had told me.

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