Patient Comments: Sarcoidosis - Treatment

Question:

What kinds of treatment, including medication, did you receive for sarcoidosis? Did they help? Submit Your Comment

Comment from: Survivor, 75 or over Female (Patient) Published: March 03

I was diagnosed with sarcoidosis in 1982. Initially I was treated with prednisone, but not for a long period of time. My lungs are scarred but I was able to work till age 67. I am very active still at age 78. I obviously can’t run, walk fast, or walk uphill, that gets me short of breath. I know my limitations. I do have pulmonary hypertension, but am controlling this with medicines. Sarcoidosis has not affected my life significantly. I am thankful.

Comment from: Gailk, 45-54 Female (Patient) Published: November 04

I was given prednisone for sarcoidosis. I was started on 40 mg and then eventually weaned down to 5 mg. I went off them and within 2 months arthritis symptoms started. I am now taking about 2.5 mg to control the pain and swelling.

Comment from: M68e66, 45-54 Female (Patient) Published: July 05

I do not recommend high dose prednisone for sarcoidosis, I gained 100 pounds and developed high blood pressure (BP). I now have to take three different BP medicines, and my pain in my knees, ankles, back, hips, and legs is so much worse. I take Plaquenil 200 mg, twice a day. My pulmonologist says it is helping, but I can't really tell any difference. I am on oxygen, in a wheelchair or in bed all day. I have had sarcoidosis for 20 years now and I also have pulmonary hypertension, which makes it much harder to treat. I just wait every day for bed time to come, because the only time I am not in pain is when I am asleep. I take hydrocodone and Zanaflex for the pain and I also have a spinal cord stimulator. I have had my SSDI (Social Security Disability Income) since 1999. I am so tired of doctor appointments, tests, surgeries, and hospitalizations.

Comment from: Foxy, 55-64 Female (Patient) Published: November 10

Be careful if you take prednisone for sarcoidosis because it makes your bones very weak and causes them to decay. I was taking prednisone and I had to get a hip replacement and broke a rib by coughing.

Comment from: Joebamaboy, 35-44 Male (Patient) Published: August 28

was diagnosed in may 2012 was given prednisone for 3-4 months. And now taking Cytoxan 100mg a day in a pill form. It gets worse. In the gym working out every day.

Comment from: Andrea, 65-74 Female (Patient) Published: April 02

Was diagnosed with acute cytomegalovirus (CMV). Now, a year later, I’m having difficulty breathing – inspiration, not expiration. I researched sarcoidosis and as that can happen after acute CMV; I believe I have many of the symptoms a year after my CMV diagnosis. I was just wondering if anyone out there has had this.

QUESTION

The term arthritis refers to stiffness in the joints. See Answer