Sarcoidosis

[Guest]

I have sarcoid in heart, liver lungs.I am diabetic from prednisone. I at 60 mg a month went to 40 mg six months than tapered to 0 in next three months. totally off of prednisone three months. sarcoid fld up again now I'm at 60 mg a month a half. After first seven months of treatment. is when joint muscle pain started. I am having a lot of joint muscle pain wondering if it could be from sarcoid or prednisone?

[Guest]

Could be due to either really. This topic I find is poorly discussed in the literature, myalgias later on with sarcoidosis. The most common time I see this problem is when one is being tapered off the steroids but they can occur with prolonged dosing. Sometimes when a person has been on high dose steroids for prolonged periods one might consider adding another medication such as methotrexate, of course methotrexate has side effects, but does seem to help those musculoskeletal effects of sarcoid. One can treat these sometimes with nonsteroidals.

[Guest]

I took Prednisone 40 mg. for 6 weeks and then tapered for 6 weeks, 2x in the past year. The first bout was relatively uneventful. The second time I had more side effects. Most of the side effects resolved themselves as I decreased the dosage. The one complaint I had was that 3 months after stopping the Prednisone I developed joint pain. My Pulmonologist said the pain was probably a result of withdrawl from the Prednisone. He offered a low dose with taper to ease the pain. I declined and he suggested it would get better on its own. Its been a month and a half and I have minimal joint pain. Good Luck

[Guest]

I HAVE SARCOID IN MY JOINTS AS WELL AS MY LUNGS AND SKIN. USUALLY I CAN TELL WHEN I AM GETTING SICK, BECAUSE THE FIRST SYMPTOM IS PAIN AND STIFFNESS IN MY JOINTS. IT GETS TO THE POINT WHERE I CANT STAND OR AT TIMES EVEN HOLD MY HEAD UP. NOW THAT I HAVE BEEN DIAGNOSED, IT DOESNT USUALLY GET TO THAT EXTREME BECAUSE THE STEROIDS ARE INCREASED. RIGHT NOW THEY HAVE ME ON METHOTREXATE, IM NOT ON PREDISONE. THE SIDE EFFECTS ARE NOT AS DRASTIC FOR ME AS FAR AS MOOD SWINGS AND WEIGHT GAIN. I AM ALSO TAKING CELEBREX, I DONT SEE WHERE THAT HELPS MUCH, BUT IT IS AN ARTHRITIS MEDICATION AND I HAVENT BEEN ON IT VERY LONG. GOOD LUCK TO YOU!

[Ron]

I had eyrothema nodosum on both my ankles and was diagnosed with sarcoidosos last spring. It took about 2 months to go away and only after 2-3 times of cortizone medication for about 1 week duration. This appeared to be the end of all the problems but now I have bigger problems, I can't do anything without feeling like I'm going to have a heart attack. This came on suddenly and is totally not like me. I am looking for answers and seen your query about joint pain. I have had severe joint pain but didn't consider it to be connected to sarcoidosis. ie not being able to sleep without rolling over to a new position every twenty minutes. They tell me my lymph glands in my lungs are not enlarged etc. as was the case last spring and have completely returned to normal. So far the heart has checked out ok but shows some issue on a stress test. I am about to get a scan of some kind tommorow on my heart with nuclear trace of some sort. I guess I need to know if you think the back pain I am describing could be an indication that the sarcoidosis is returning. I have questioned my doctor as to any links to sarcoidosis, he says no it can't be, but in my opinion is he may be learning as he goes. I need some answers soon as this is already serious. If anyone has any info I really would appreciate it.