Is sarcoidosis treatable with prednisone?

There are 20 comments on the GoErie.com story from Jul 16, 2008, titled Is sarcoidosis treatable with prednisone?. In it, GoErie.com reports that:

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

Join the discussion below, or Read more at GoErie.com.

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edj2001

Dallas, TX

#1 Jul 16, 2008
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/
fox82

North Ridgeville, OH

#2 Jul 16, 2008
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/
Please be very careful, my mother was treated with prednisone, several years later the bines in her spine were only half their normal size and VERY brittle
Mike S

Philadelphia, PA

#3 Jul 30, 2008
The Marshall protocol is the way to go. Prednisone is dangerous and counterindicated in sarcoidosis. Its amazing that it is still the standard of care.
Nancy - Phoenix

Phoenix, AZ

#4 Oct 5, 2008
Have a question. Has anyone experienced liver damage related to the use of prednisone? That is the drug of choice of my physician for treating sarcoidosis.
Frank

Union City, PA

#5 Oct 7, 2008
I had sarcoidosis of the central nervous system in 1995. My lesions were in my brain and spinal cord. After spending three weeks in Erie hospitals, where no doctor could find out what was wrong, I went to the Cleveland Clinic. The day I got there, I had an MRI and the next morning they did a lymph node biopsy. They had the sarcoid dianosed that day. I was on very high doses of prednisone, through my veins and orally. After a couple of months of treatment, the prednisone was ineffective on the disease. The only thing the prednisone did was add over 100 lbs to my body. You just can't stop eating on that stuff. After I was paralyzed from the waist down, my doctors gave me chemo treatments and radiation. I was in the hospital for 5 months and the prednisone for another year until I was weened off. Good luck. Please contact me if you have any questions.

Frank
lymph nodes

Barnesville, OH

#6 Nov 19, 2008
Frank,

How are you doing now? I have sarcoidosis in my lymph nodes and I am on the Marshall Protocol. I hope it works.
lymph nodes

Barnesville, OH

#7 Nov 19, 2008
are you doing OK now?
Frank

AOL

#8 Nov 20, 2008
lymph nodes,

I'm doing great. It's been 13 years since the sardcoid and I have very little effects from the disease. My lasting effects are from my paralysis, bladder control and balance. I just happy to be alive and the whole experience changed my life for the better.

I never heard of the Marshall Protocol but I'm sure its good because there has been a lot of research done since my experience.

Frank
sulaf taha

GÓza, Egypt

#9 Dec 7, 2008
Hi, I have been diagnosed with sarcoidosis, lymp nodes and all. I have been on prednisone for a year. I am currently tapering it off. My sedimentation rates and c-reactive protein tests are great. And my lymph nodes are clear. I think I am done with this disease for good. At least, this is what I have decided as I know the prognosis has a lot to do with how WE feel. SO have courage and belive u can do it. And u will!
John andrews

Auckland, New Zealand

#10 Apr 16, 2009
I too have been diagnosed with sarcoid for 6 years , I am about to begin the MP
Can you please tell me on what dosage level of prednisone were you on when you started taking benicar ? I am interested on how the weaning process went for you as I am abouit to start in the next week or so , I have olmecip and mino ready .
my login id on the MP forums is john_nz
would be great to hear from you if you get this

regards
John
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/
John andrews

Auckland, New Zealand

#11 Apr 16, 2009
I too have been diagnosed for six years with sarcoid, I am about to start the Marshall protocol ( I have olmecip and minocycline ready )I am interested to know what dosage level of prednisone you were on when you started the weaning process? and any difficulties you had,

any advice or description of your process will be valuable to me
best regards
John
Darly

Aberdeen, WA

#13 Apr 29, 2009
I am glad to have found this space so we can talk about our disease. I have had Sardosis for 7 years now. I am still not sure what to expect. I have it in my lungs and a lot of skin nodules on my shins and other bumps under my skin that I occasionally need shots for. I am flying blind. Some days I feel great. Others, and sometimes I feel like even the most menial tasks like getting dressed or showering, or making a piece of toast are too hard to do. I used to walk all the time and go to a gym. But I would be sick for two days after I exercized in the gym. How do you keep yourself healthy with sarcoidosis? I used to be very active and now feel like the world is just passing by my window and I am too tired to join it.
rgodbehere

Upland, CA

#14 Aug 19, 2009
I was told I had Sarcoidosis in May of 09 and have seen so many doctors. The Auto Immune doctor put me on 60 mg of Prednisone,(sucked) and then went down to 40 mg because I felt like I was having a heart attach from what it was doing to my stomach. So now I take a pill two times a day for the acid thing.
I was sent to the pulmonary specialist/internalist which did a CT scan on my neck as it go so huge from the Prednisone. Now they found sometype of growth that they are not sure in my throat. I will be getting biopsy of my throat Sept 1st to see if it Sarcoidosis or what.
I am so sick of the Prednisone I gradually took myself off of it until September 1st. I have only been on it for 8 weeks and I look so fat...it is a bummer looking in the mirrow...
Now that I am off the prednisone the past couple of days I feel like I have the flu again.
I know I will be OK soon, but for now it is in Gods Hands and I need to stay positive. Go to work and keep working out. I fear I will lose the job I love so much...because somedays I feel so poorly.

Keep the faith.
Rgodbehere
Brenda

AOL

#15 Jan 23, 2010
Have had sarcoidosis for 3 years. Have nogels in my lungs. Took predinsone for 3 months went away until 5 months ago. My sarcoidosis always attacks my feet, legs and badly my knees. Does anyone else have this prolbem with sarcoidosis. It has been so bad lateley that can't hardly get around. Has brought everything to a halt. While on the predinsone i do very well every time try to come everthing just comes right back with a bang. Does anyone else have the sarcoidosis that attacks the legs and have you found any help.
Rita

Philadelphia, PA

#16 Mar 16, 2010
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???
janbar

Wewoka, OK

#17 Jul 26, 2010
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 live in southern OK and am trying to find a Dr to treat my sarcoid with the Marshall Protocol. Could you supply this info to me?
janbar

Wewoka, OK

#18 Jul 26, 2010
Not sure if I need to repeat the above here so here goes. I live in southern OK and am trying to find a Dr to treat my sarcoid with the Marshall Protocol. Could you supply this info to me?
KESHA

Laurel, MS

#20 Sep 4, 2010
i was hospital at the end of may and dignois with sarcoidosis in my lungs. i am being treated with prednisone and bactrim. after reading some of your comments should i be frieghten. i havent been really sick like im hearing some of you guy been. when i went to my doctor i had to take a breathing test. the results came by good . my doctor said that it looked like everything was in remission. is there even a such thing as remission dealing with this type of diease. before i found out i was having a lot of trouble with my skin. after i started taking my medication it cleared up. somewhere around 3 wks ago i was going to try and take myself off the meds. because i wasnt feeling sick anymore but about 2 days ago my sking has started back breaking out again does this mean that my sarcoid could have flared up againg but im not having any major simptons like i was the first time. i dont know what to expect from this disease but i am very afraid. is there someone who would like to educate me on this and maybe give me some advise on what should i do.
cheryl

United States

#21 Sep 10, 2010
I was diagnosed w/ sarcoid in my lungs 2 yrs ago.. I have been on prednisone ever since.. can't seem to get off it.. I really haven't seen any problems w/ being on it, excepet it really doesn't help me. the dr's just keep pushing it.. I also have a bad case of asthma ( just found this out in the last yr.) I am always sick.. I go on antibiotics and may feel good for a week out of the month.. I also have very sore joints and am weak.. I cough and wheeze all the time and bring up sputum.. Does anyone have any advice? My social and work life have really been affected..They say that it will go into remission, I'm not so sure..
Rita

Philadelphia, PA

#22 Sep 13, 2010
I'm updating my status as March, 2010. I just finished the prednisone treatment of 6 months. I had the worst side effects from that drug. From retaining fluid, weight gain, mood swings ("Cybil"), etc. I also developed C-diff collitis from being on an antibotic with steriods. Still suffering some days from it, also found I have divirtiulosis. Something else to deal with - lots of stomach issues. I am now taking plaquenil 1x a day as the 2nd dose makes me very nauseous. Also have other pain meds to take due to extreme joint pain still some days but really do not want to get back on the steroids. My lungs look good. All I can say is some days are better than others... live one day at time, hope, believe and remember to laugh...

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