Severe Joint Pain and Swelling

Is anyone else out there living Sarcoidosis experiencing severe swelling and joint pain? All of a sudden last week both of my knees suddenly swelled to a huge size. My right was worse than my left but they were both so badly swelled behind my knees that I could barely walk. One week later and I'm still having a lot of difficulty with pain and walking. Dr. Culver at the Cleveland Clinic is my Sarcoid primary and he has called in prednisone for two weeks. My normal meds are Imuran 150 mg daily and Neurontin 1600 mg daily for my Sarcoid.

Any advice or others with similar issues? It's been rough.

Thanks for your input-TLC

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Let me know what he says.. I have severe joint pain in my elbows and fingers... I am heading to the Cleveland Clinic in July.... All my doctors just say to deal with it... I can only take 2 Motrin daily for it and do not want to take any stronger pain meds I hate the way they make me feel... My pain is not constant it is daily but it comes and goes... Hope you get answers soon..

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I have had joint pain for years now but this thing with my knees was very sudden and involved a lot of swelling so it was extra weird. I too don't want to take stronger med so my family doctor put me on Neurontin and it has helped some with the day to day pain. Dr. Culver at the clinic agreed with that as a pain solution for the time being. You might ask about that from your family doc. I'll be back at the clinic in April(I go every 3 months) so I'll let you know what I find out. In the meantime we'll just have to hang in there together.

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Swelling in the legs and pain behind the knees can be circulatory or vascular issue and might be a sign of phlebitis. You should have a doctor rule that out immediately. Good luck.

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Hi TCL,

Yes the swelling and joint pain are a symptom of sarc, and as was said above could be other things too. Just like everything else. So yes go see the Sarc doc.

I also want to tell you that I had joint swelling & pain and it mostly went away when I stopped eating wheat. The wheat free is not a cure all, but can help. Also consider decreasing sugar intake helped me.

God's speed
DJ in Calif

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I get joint flare-ups too, and they are never really positive whether it is sarcoid or my other major autoimmune disease, ankylosing spondylitis. They usually assume it is the AS.

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I have joint pain in my elbows, hands, knees and ankles regularly. Muscle pain in my neck & back. I started Neurontin recently and it has been like magic for the pain. I also recently started taking vitamin B12 for its metabolism and immune system boost.

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my son also has swelling of the joints and sores in his mouth and bumps on his skin, the prednizone seems to help him tolerate the worst of it, he actually hasn't had the symptons lately but started again today, God Bless all of you with this disease.

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Sounds like quite a flare-up. Sorry you are so uncomfortable. I experienced severe swelling a debilitating joint pain, too. The prednisone did the trick for me. I haven't taken anything stronger than Aleve or Advil for the pain in almost 2 years. Like others, I still have joint pain in my elbows and hands especially. It's tolerable. I have met Dr. Culver at a Sarc conference two years ago. You are in good hands.

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Hi TLC,
I have heard alot of good things on this site about Dr Culver and Cleveland Clinic. While I havent been seen by him I believe like kimlou said, that you are in good hands. I was diagnosed back in Oct 2000 and didnt have any joint problems until '09. In Nov '09 my rheumatologist found out I had a connective tissue disease and this was what was causing it. I figured it was the sarcoidosis but it was something else. It is an easy trap to fall into, thinking whenever something goes wrong, thinking its the sarcoid. We can and often times do develop other problems. Not trying to spoil your weekend just thought I would share my experience and remind you(and others reading) to keep an open mind when dealing with arthralgia/arthritis. I hope the prednisone will give you back some mobility and ease your pain. Best wishes.

Kristopher

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I know when my sarcoid is playing up because my kness are the first thing to become painful and swollen then the rash, I think we have to pay extra attention to wht are bodies are trying to tell use when you have sarcoid because if you miss the slightest thing bang!! your in a flare up. I hope all goes well for you.

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I have sarcoid. OOh yes the join pain and swelling of the knees are the worse. I feel the prednisone makes my symptoms worse at times. I am coming off the prednisone at this time and I do feel a little better. I have inflammation in my lungs. It felt like I had the flu when it hit me. Did a chest xray and bilospy to find out it was my sarcoid. I was first diagnosed in 1996. I though I would be in remission forever. The symptoms are very tricky. Good luck and thanks for sharing.

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I was having the same problem I just went to the rhumetolagyst and said I had sever authirities. So he gave me hydroxychloroquine 200mg (plaquenil) He said they use it to treat lupos as well. Its supposed to help the joints with swelling and restore energy. I only been on it for a couple days so we will see. Im also on 40mg pred. aday. Hope this helps.

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Thanks to everyone for all of your supportive words and great ideas. I have been on all of the meds mentioned and am having no luck...so far. I try to never give up hope but when you hurt 24 x 7 and can barely walk it gets tough. I'm still working 40 hours (or more) per week and that isn't helping the issue. I really think the stress of my job is causing my condition to worsen. Do others feel that way? The week this happened I was working way too much...

Dr. Culver at the clinic is a blessing to me! He calls and checks on me and is constantly thinking about what other issues may be going on. I guess this last thing was just a severe flair up but I always wonder if there's something else that we just haven't gotten to the bottom of yet.

Be well!

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I don't have any advice...but I'm so glad to hear the many positives about Dr. Culver. This is who I will be seeing when hubby and I go to Cleveland Clinic the 4/5th... we are going out a day early so we don't have to leave so early on the 4th.

I can identify with the joint/muscle pain... I wasn't really sure this could be related to sarc. I've been exercising some.. only about 20 minutes Mon, Wed, and Fri... but it's hard to move to accomplish. These exercises are just basic floor exercises for various parts of the body...nothing aerobic.

Thank you for starting this thread because I'm working on a list to take with me so I can cover it with the doctors.... I send to you and all who deal with this part of sarc prayers, and well wishes as all search and pray for answers.

Hugs to all,
Dandee40

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Dandee,

You will LOVE Dr. Culver. He is one of the kindest, most caring physicians I have ever met. He will take very, very good care of you! I'll be there on the 13th so I'll just miss you! I hope all goes great for you there and that you find the help you need.

Be well,
Tracy

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Thank you Tracy... It would have been nice to have met a friend from the Inspire forum... it's a miss of about 9 days. I went to my pcp today for a check up. He was so pleased that I was able to get an appointment fairly quickly.... Initially, I was concerned because I didn't get an appointment with a Rhumetologist (spelling) for the liver/spleen issues, but he said they will take care of me... my cardiologist will be Dr. Mark Niebauer...

Have a blessed day,
Dandee40

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I have neurosac in my brain and this past week I have had severe pain in my left knee. It started sunday and this week was very painfull for me cause I also had to work about 40 hours. I really feel your pain! Having to be on your feet alot doesn't help with the pain either. I finally went to my primary dr today and he drained my knee and put cortizone shot in the knee as well. He is having the fluid sent out to analyze it to see if my neurosarc is the cause or something else. I just seen my neurosarc dr last friday because I was having bad headaches and I have to get a MRI to check status of neurosarc. When it rains it pours! Having sarc is not fun and games! My predisone was already increased by my neurologist and not allowed to have aspirin or advil and motrin. So, draining the knee was I guess best choice for me. My knee feels alot better so far. I'll get results next week sometime and go from there. Maybe if your knees don't improve from the increased predisone your dr could drain fluid from it if there is any. I hope your pain goes away for you! Take it easy and feel better!

Neurogirl

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I was diagnosed with Sarcoidosis in 92' and didn't have a lot of symptoms weird rashes and bumps. my Dr. in NY put me on prednisone, i got just about every side effect it can give you ... and I think it was making me a bit crazy.... not a good time.
Had a great Opthamologist when it started effecting my eyes, but as for the rest of me, no good answers.
Currently I am experiencing my first "real" bout of swelling, pain, stiffness, in my ankles, calves, hips, wrists & fingers.
The last Dr. resorted to what amounted to guesswork and prescribed an anti inflammatory that did little new Dr. wednesday.
I guess all I really want to say is thanks for all the great info here I've learned heaps already.
Good luck to you all.

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I was diagnoses with sarcoid 2004. Basically I'm at wits end. I'm tired of being sick. 2 1/2 weeks ago, I woke up in severe pain from the base of my skull to my feet. Could not move. That lasted for 2-3 days. Since then I have had 2 more bouts. This last one lasted about a week. I absolutely could not function. It is crippling. My knees and ankles swelled and were inflammed. My pain doctor sent me to a Rhumatologist. I've just seen him and before he can perscrib for me he needs blood test results. I NEVER THOUGHT THIS WAS AS A RESULT OF SARCOID. This doctor was taken back to find I was never sent to see a Rhumatologist before this. It seems that doctors just don't know much about this decease. Very frustrating. I hear statements like "most people don't even know they have sarcoid. I clears itself up after a few months.". Yet, mine is so severe I feel like a cripple most of the time. Fatigued, nausiaus, dizzy. I can't concentrate. Hard to focus. Disconnected. Has anyone else felt like me?

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ANy of you guys take high dose aspirin EC (1-2 grams daily) and/or glucosamine/chondroitin.msm/hyaluronic acid? This has helped my joint, knee, leg and foot pain a lot. Most days are pretty god. I have a few twingy days. On those days, I take an afternoon nap, a second dose of aspirin EC. Check it out. Ask your MD. It works for me.
Thanks, Gary RN

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