Sarcoid - Severe Joint Pain/Inflammation

Diagnosed in March 2011....found in lymph nodes around lungs, but severe swelling and joint pain is the symptom that has the most significant impact on my life. Does anyone has a great MD in the Atlanta area, who is knowledgeable of this disease. OR....anyone have anything that has worked in reducing the inflammation and pain in the joints.

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Many, many folks get relief from drinking dark or black cherry juice every day in addition to prescribed meds.

Atlanta area docs mentioned in older posts are:

DR. WILLIAM HU - EMORY CLINIC

Dr, Anthony Kimani - his clinic is the Kimani Clinic (www.thekimaniclinic.com) 450 14th Street N.W. Atlanta GA 30318. tel# 404-685-8414

Good luck,
I.

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I am a Canuck so Atlanta is definitely not in my neck of the woods, but I do suggest a good rheumy to find a decent med for your arhthritic pain and inflammation, he will suggest a few drugs with far more bang for the buck than cherry juice which is great for keeping type 2 diabetes at bay if you have to take any of the nastier auto immune drugs. Good luck and if the prayers of a demented cat and an old reprobate assists anyone I hope they help you. Gene

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Joint issues are greatly helped by glucosamine/chondroitin/msm/hyaluronic acid. Be sure it has all 4!!! Also, I take aspirin EC, 1,000 mg daily, and keeps a constant level of aspirin in my system to fight both pain and inflammation. Be sure it is EC only, or it will eat the lining of your stomach. It passes through the stomach into the intestine where it is readily absorbed and does no harm. If I need a second dose once in a while, I take a dose after dinner. Also curcumin, 1,000 mg daily helps with both pain and inflammation. Believe me, it worked for me and others. I am just an RN and can't prescribe, but my experience points to this direction of pain relief: supplements and aspirin EC.

Thanks, Gary

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Be careful Gary I have 3 years of medical school and my doctorate and telling a person you don't know to take aspirin even if it is enteric coated it still releases blood into the system in the amount of 1 teaspoon per 300 milligrams and can dlute the blood to the extent that in a woman who is less than 135 pounds who is sensitive to the drug can cause extensive bleeding to the least insult. All Nsaids should be closely monitored as they can cause coronary abnormalities in the arthritically impaired so please clear any drug you decide to take with your doctor. Gene

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I try to always say (1) this has worked for me (2) check with MD.
I have researched this, and EC sidesteps GI bleeding. What is your doctorate in?
Thanks, Gary

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I'm in Tucson, so I'm sorry I can't help with the doctor situation, but I originally presented to my Primary Care Physician with joint pain and fatigue as my two major symptoms (They were really bad then, but simply tolerable now). I too had the lymph nodes in my chest like you. I've been on Prednisone for over 2 years now, but finally found a Rheumatologist that is dedicated to getting me off the steroid. The thing is...Prednisone has really helped and has kept me functional, so I can't complain about that. However, the side effects that I'm having with the large amounts and the length of time that I have been on them is not good. My Rheumy now has me on Imuran, along with Prednisone, and it seems to be helping, but with other very high stress issues in my life, he isn't taking my steroids down quite yet. Once things calm down in my life, we will start to tapper.

Bottom line, find a good Rheumatologist who understands the disease and is sensitive to the issues with too much steroid use.

I hope you feel well soon.

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After 3 years of medical school and 2 years of residency I became a normal doc and then I took my specialty in psychology through Wilfrid Laurier I hate to flaunt this stuff but I earned the honorific doctor now how the hell did you earn yours. Did you know that Aspirin in that dosage can exascerbate a minimal bleeding disorder like Von Willdebrandts and cause a severe sub cranial bleed that could kill a person in their sleep. Most doctors don't prescribe aspirin except in 81 mg. dosages for cardiac care, just for this reason so why would you? Gary I was not being mean I was just warning you that you could be sued by the family of a greiving woman. Gene

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Until 4 weeks ago, I was in terrible pain ... all over. I started drinking dark cherry juice and I am off all pain meds. I danced like nobody was watching a week ago. Danced to every song. I got short of breath a few times but no pain.

Give it a try. I use Knudsens Dark Cherry juice and it has given me back some of my life back. I've been off prednisone since early January and I suffered severe pain.

I wish you luck.

ACINNC

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Trying dark cherry juice, today! My pain is interfering with my life. Is there a pain pill that might help? Narcotic or not, doesn't matter, I'm desperate.

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Gene,
Thanks for the note. I am glad you are sharing your experience. Aspirin, EC or not, is a medication, and like all medications have side effects.
I teach all people with sarc to stay in contact with their MD's and to run past them new medications. I have said many times, that I am not an MD and can't prescribe. I also tell people to get labs done. I am sharing what works for me. SInce your first note, I have done a lot of reading on aspirin. Some studies indicate in studies between plain aspirin, aspirin EC, and a placebo, that plain aspirin does have an effect on GI bleeding, and that ASA EC has the same effect as a placebo on GI bleeding, which means none. Other studies indicate indicate not a lot of difference in GI effect between plain and ec aspirin. So the jury is still out. Some of the symptoms of aspirin toxicity are sudden onset of tinnitus, bruising (indicating platelet involvement), and GI bleeding. So I say to all, check with your MD about high dose aspirin use. I went to as aspirin site which thoroughly discusses aspirin and all the science behind it, and they conclude (1) every person is different, so ask your MD which aspirin dose is right for you, (2) if you take more than 1 gram of ASA four times a day, contact your MD. Thanks again, Gary

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Do they make dark or black cherry juice sugar free for a diabetic?

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Sorry to hear about your diagnosis. You and I have the same kind of sarc. I have been seeing Dr. Anthony Kimani at the Kimani Clinic for two years. It's a hike for me cause I live in Cumming and his office is down by IKEA, but he is passionate about sarc. I have heard of others who see Dr. Hu as well, so I think you'd be okay with either one.
As for the pain and swelling, I was on pred for 6 months. This was prescribed for me in the ER and before I knew it's evils. Once you're on it, though, it takes a while to taper off. Thankfully, I haven't experienced that awful joint pain since.
Good luck!

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AUwde2011,

Hi! Welcome to the sight. And welcome to our club "sarcoidosis". I'm sorry you have been diagnosed w/sarc, but at least now w/a diagnosis you can start making progress. Not all threads are this inflammatory w/members arguing back and forth, so don't be sorry you signed up. Everyone means well.

As others have mentioned, you need to find a doc who specializing in sarc. If you can't see one of the recommended docs, ask whomever you choose if they do specialize or know anything at all about sarc. Some have NO clue about it, and therefore, you shouldn't see them at all because what they don't know could hurt you.

Check out the page on INSPIRE that gives doc recommendations. They are listed by state, so you should be able to find one near you. That's how I found mine, and I'm so glad I found him.

I too have joint pain, but I do not have swelling. I've been diagnosed with "moderate" arthritis, but I personally think it's severe. I've had a couple of joints cleaned out of all the arthritis built up in them and I've been told I need a hip replacement, but I should wait until I'm as old as possible before getting one.

I also suffer muscle pain, and was diagnosed with fibromyalgia the first time I went to a rheumatologist (rheumy). Be prepared for that. It often coincides with sarc.

Good luck.
Loran : )

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My arthritis was pretty bad a few months ago. I was taking Celebrex every day and still in pain much of the time. I would wake up at night and not be able to get back to sleep. I started taking a high dose of fish oil (EPA+DHA=2 grams or more), which is 6 gelcaps of the brand I'm taking. My arthritis is nearly gone and I haven't taken a Celebrex in weeks. My co-workers say that I used to clutch my elbows all the time but I don't anymore - I didn't even realize I was doing that. About the only time it bothers me now is when I do a lot of gardening or other tasks that involve flexing my elbows (the joints most affected at this point). I honestly didn't expect it to work so well, but I'm very glad it did! I'm not sure if it is helping the inflammation elsewhere in my body (like my spleen) but I will find out in June when I go in for my follow-up. Unfortunately, I still have the fatigue and muscle pain, but I am very glad to have relief from the arthritis!

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now that is one treatment I will try

if for no other reason then the hope that I will too dance once again "like no one is watching " happy for your experience I do hope it lasts :)

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I'm not aware of a sugar free version but I have diabetes also and I check my blood sugar 2.5 hours later and it hasn't raised my blood sugar levels. If you are having trouble with high BS readings, you can try organic Apple cider vinegar like www.bragg.com. I took that when I was on high doses of prednisone because it drove my BS through the roof. I took a capful before meals and it tastes awful so I mixed it with was to dilute it ... very strong taste. It kept my BS readings normal. You'll have to watch your readings because it can make you have lows. I only took it when my readings before meals were high.

I've heard that cinnamon helps also.

Good luck to all. I'm not medical professional of any kind, I'm just sharing what works for me. Everybody who reads or joins Inspire, they know that the advice/experience they read about is individual although many of of struggle in the same way. Let's keep sharing.

Be well and pain free.
ACINNC

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I know that a good percentage of people with sarcoidosis take methotrexate and aspirin is not recommended for people on methotrexate.

http://www.drugs.com/drug-interactions/aspirin-with-methotrexate-243-0-1590 -0.html

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Thanks to all of you for the great info.....I am thrilled to get some much valuable information and taking copious notes of all the suggestions, and will keep you posted on my progress.

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Thanks Gary....good info about the aspirin.

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