I have had swollen feet/ankles (yes, a cankle) for awhile now. Doctor says it doesnt have anything to do with Sarc. Seems like though when the Sarc flares up, the ankles get worse. Anyone have any info/experience with sarcoidosis and swollen feet and ankles??
I don't have problems with my ankles but my rheumatologist says that swollen ankles ARE a symptom of Sarcoidosis.
Hope this helps:)
Swollen ankles and painful feet were my first major symptom, even before the shortness of breath kicked in. If your doctor refuses to believe they are related to sarcoid, it may be time to either educate your doctor (sometimes we need to) or find a new doctor. If this is your GP, perhaps he/she isn't too familiar with the disease and just needs to learn more.
I'd strongly recommend you find a rheumatologist who is familiar with sarcoid. The disease is tough enough without having a doctor who insists you don't look sick or the symptoms are all in your head.
My diagnosis was partly substantiated by the swelling and pain in my joints, particularly ankles and wrists. Perhaps your doctor needs a gentle nudge. Does the swelling accompany any joint pain or stiffness? Often doctors will respond more to an issue that brings discomfort rather than one they can too easily write off as cosmetic. Good luck.
Swollen ankles / soreness in joints were the first symptom of Sarc for me too. Fortunately for me, this only lasted a few weeks and then went away. I second nanner's recommendation to find a good rheumatologist who is familiar with sarcoidosis.
ahhh! My ankles were the size of my thighs for months and now it comes and goes. Dr. Judson, a wonderful doctor I saw in SC confirmed that swollen ankles are very much a symptom of Sarcoid.
There is not much that he suggested I do other than limit foods that cause inflammation when swelling occurs. Lots of water, lots of rest.
Flip flops are my best friend!
Hey there Cisco
Your doc is sadly mistaken! Find a good rheumatologist! Preferably at a larger teaching hospital! I do not get the swelling so much in my ankles so much as my fingers (My fingers swell and my knuckes turn bluish!) and all of the joints in my body experience some swelling and a whole lot of pain!
I see a Rheumatologist who prescribes methotrexate as well as Clinoril and Tramadol and this helps some. As of lately my swelling is getting a bit worse and my Rheumy is thinking of increasing my Metho to a higher dose.
Swelling can certainly be sarc related!!! It is very sad that docs do not know enough about this disease and mislead so many people. it is kind of sad to think of the people with sarc who have not heard of this site and do not know who to ask and have to suffer needlessly because of a docs ignorance!
Good Luck and be well!!!
Dawn
YES!!! I have had the same thing my ankles get very swollen as well as pain in the top of my feet and calves.
I am currently taking my methotrexate once a week and am thinking of talking to the doctor about taking it MWF instead.
Seems that by the end of the week my ankles,legs and pain are much worse I guess the metho is just not getting me thru the whole week.
It is very hard to find a doctor that truly understands how many different things sarc can effect and sometimes how many different ways it can change even in one person day to day.
I don't have swollen or painful ankles. My sars is primarily in my eyes. But everytime I go in to see my rheumatologist to have my blood tested (I am on methotrexate) he checks my ankles and my wrists. Apparently quite a few patients do have problems in their ankles.
My sarc symptoms started with a swollen right ankle. I had not injured the ankle but the swelling would not go away. After a couple of weeks the left ankle started to swell, followed by my lower legs. I saw 3 different doctors who had no idea what was causing the swelling. It was only when my salivary gland started to dry up and the right side of my face went paralyzed that my doctor sent me to a rheumatologist. Luckily he suspected sarcoidosis right away and ordered a chest x-ray which confirmed his suspicions. I was put on Prednisone (15 mgs/day) right away which took away the ankle swelling almost immediately. I was weaned off of Prednisone about 3 weeks ago (after having been on it for two months) and so far the ankle swelling has not returned.
Hello Cisco611,
I too am experiencing pain, stiffness and swelling in my ankles, and on the tops of my feet. These symptoms - along with EN - were the first "noticeable" indications that I had skin Sarcoidosis - which was just recently diagnosed. My rheumy put me on two courses of Medrol Dosepak which miraculously cured my pain and stiffness, but after I started weaning down, the pain and stiffness and swelling came back with a vengeance! I was then put on Prednisone 10 mgs. a day and again the symptoms went into check. I weaned myself off of Prednisone not long after starting it because of some pretty horrible "side effects", ( severe blood loss that required a transfusion, kidney stones, psychotic disturbances etc... ) and am now trying to live with the discomfort, without the use of pain killers or steroids. Lately, my legs have become very sore and the skin very tight all the way up to my knees - especially the skin behind my knees. Though I am now very limited in my ability to walk without the use of a cane because of the swelling and pain in my legs and feet, I am determined to stay away from Prednisone and Methotrexate.
Be well people and trust your voices!
dockrock
That was my first sign the swollen ankles. They turned purple and red and the pain was like nothing I ever experience. Maybe print our replys and take them with you to the Doctor. Hoping that you will get better soon and find a Doctor that will listen to you and help with your problems. God Bless
Laura7 E.
Yes, about 6 months ago my right ankle was huge. It was so bad that I couldn't walk on it. At first the doctor (family) thought It was gout and ran all sort of tests. When he didn't find a problem he figured out that it must be the sarc. He increased my steroids and it finally went down. But, it still gets a little puffy once in a while. It is definately the sarc
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