Has anyone gotten SARC after a total knee or hip replacement?

Hi all,
I had a total knee replacement in 2003 and was diagnosed in 2006 with Sarcoidosis. I need to know if and how sarc can affect the artificial joint and surrounding tissue. I have tried to google it but have not found anything. I also have a thumb joint that is very sore most of the time. It is not very swollen and only I know it's sore, so now I wonder is it in my joints, even my spine. I am not sure where to start to find out the answers to my questions. I have a shoulder, spine and arm pain and I am waiting on a doc appointment with a bone doc, but he doesn't do backs. So if there is something going on in the spine, I must go somewhere else. the cleveland Clinic told me to do my follow ups here and with the new pain, and it would be like a last resort to come up there. So now what do I do?
Sheila

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14 replies. Join the discussion

slwhite,
I have had Sarcoid for 16 years and had a new knee installed 7 years ago. So far no problems. When I get a Sarcoid outbreak I get fevers, so I had the surgery when I was without fevers.
I was wounded in the military and the knee was the point of injury, the Veterans hospital was where it was done.
I just made sure the surgeon had done many hundreds of knees prior to mine, experience counts.
Tippy

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I am wondering if I have sarc in my joints also but Boston dr's do not believe in joint sarc and seldom look for bone sarc unless it is staring at them in the face boldly. I have started sending and faxing info to my 2 surgeon's, 1 lower limbs, 1 upper limbs and to my pain clinic dr.

Here is the link that was shared a bit ago with us that I saved so it make me wonder:

http://radiographics.rsnajnls.org/cgi/content/full/23/6/1389

http://www.ajronline.org/cgi/content/full/185/1/154

Dr's are confused why I have so little cartlidge between my bones. I need a double full knee replacement but due to my age I am having gel injections even though 2 ortho surgeons stated it probably won't work and the pain clinic dr stated the same thing on the 1st injection and the 2nd injection and it may take more then the usual 3 injections and could not work at all. I am not crazy about this gel in my body but I would like to be able to walk and no one will right a script for a walker, wheel chair or a scooter only a quad cane. Sometimes I need more than a cane and sometimes I will beat you to the corner.

Hope the sites have helped
GN

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I got sarc after a fall with knee injury: bad bruise with bad pain on crutches for 7 months. Lots of NSAIDS. My thought is that the stress of not knowing if I'd recover, sitting on the couch for 7 months could have played a role. I also found out that Non steroidal anti inflammatories are associated with interstitial infiltrates, which appears with sarc.

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Interesting question, as I was really just thinking about this the other day. I am only 25 but have had 8 knee surgeries so far (the last was a year ago this week). Anyways, I have known for several years that I will have to have double total knee replacements very very shortly, as the ligaments in my knees essentially are deteriorating. I have no cartilege left, and have now gone through 6 ACLs (4 right knee, 2 left) including the one that was done just last year.

I was diagnosed with Sarc Feb 2008, and was wondering if all of my knee problems were actually due to the Sarc or completely unrelated....and then that got me to wondering if it was due to the sarc, if when I do have these double knee replacements, if the "new knees" will also be affected.


Anyways, now that I have rambled, really I guess all that I am saying is that I too am wondering about how Sarc affects artificial knees/joints. Any info would be helpful!!

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This is very interesting. Now, how do I get someone to check me for Sarc in my joints that bother me. Both knees, a thumb joint, and shoulder -spine- arm. Then I wonder, what do I do if I get the diagnosis. What would be my next course of action? Gee whiz, this is all very confusing.
Thanks for the info. We must keep each other informed.
Sheila

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Hi Sheila

I have just been talking to blondette and her daughter has joint sarc in 20 joints dx'd by biop. My issue is I can't find a dr that believes in joint sarc and if they don't believe in it then they are not going to biop it cause in their heads I only have osteoarthritis for an unknown reason. Why I never was dx'd with juvinial(sp) arthristis I don't know.
I have it in my fingers, knees and several areas of my spine also.
I have faxed and sent letters to 2 ortho surgeons and 1 pain clinic dr that I deal with and hopefully 1 of them will learn something and do more then watch me suffer.
I received the 2nd injection of gel and it isn't working. I'll see what the dr has to say about it when I go back Wed.
And my gut is still angry with me, now a wk, darn pancreas and no dr. I'll have to call again Mon. My ritual, call every Mon. But I have been reading how dangerous a sick pancreas is, wow. It appears I have a blockage.
Take care, I am going for a car ride to get away for a bit.
GN

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I was dx with Sarc 8 months after I had a hysterectomy. Sort of makes you wonder if we didn't pick up something in the OR. You know a lot of health care professionals get sarc too. I also work in a hospital but on a administrative level not a clinical one.

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Dear Sheila,
I was surprised to see your post. I had a total Knee replacement on 2004 (osteoarthritis from a sports injury as a child). In 2007, I had to have the surgery again, and another total knee replacement for the same knee. The recovery went great with the 1st surgery, and I felt great. I am a Registered Nurse and worked the night shift (12 hour shifts).
In 2006 (November) I got sick with upper respiratory infections, and had all the classic signs of sarc, but at the same time I was having severe pain, swelling, and warmth in the knee I had the total knee done. I feared it was infected, and had the tests to rule it out. The prosthesis had started to loosen, and I had pain all the time. It increased to the point I was unable to work. I had to start using my cane and walker to walk. I had to deal with this and the upper respiratory infections that would not go away. After chest x-rays, lung biopsy, and lots of labs, MRIs, I was Diagnosed with sarcoidosis in March of 2007. I think I went into some kind of remission, and was able to have another knee replacement done on this same knee.
My Ortho surgeon sent a sample of the synovial tissue, fluid, and bone from that site to the lab because it looked 'strange' to him. It was positive for sarcoid. He then finished the surgery, and my healing was different this time than from my first surgery. I started to have problems again, lots of pain, and continued swelling and warmth at the site.
The sarcoid was active again, and I had newer areas that the granulomatous cells were located (skin, scalp, lymph nodes, sinus cavities).
I went to a new Ortho doc because the one that did my 2nd surgery did not have the patience or desire to work with me to see why I was still having problems again. It was discovered that there are still sarc cells in that area of the prosthesis especially at the site of the patellar component (the plastic button that acts as my patella, with some of my original patella glued to it). The bone part (patella) is necrotic (dead areas and dying areas), but is also still regenerating itself. The amount of time that it will fully regenerate is unknown, due to the sarc cell at that site.
This seems to be uncharted territory for these Doctors, and I too am having a hard time finding any info pertaining to a situation like this on the internet.
This is very frustrating. I go to a pain doctor, had to stop work last April (2008), and the sarcoidosis is very active again.
Just a little theory I have been coming up with for my situation: I am allergic to nickel, and possibly other metals. My first implant was made of cobalt, and this was under a different MD (we ended up moving to another State in 2006). I was not tested correctly for an allergy to the cobalt, and I think I had an allergic reaction to this metal over a period of time. I think that the sarcoidosis started back in 2004 due to the cobalt, and that my body was rejecting the prosthesis as if it was an organ transplant. When it finally manifested in other areas of my body, it was too late. My 2nd knee has titanium. I never had a problem wearing this type of metal for jewelry.
My 2nd Ortho said that when the sarcoid cells were discovered during the 2007 surgery, the Doctor should have cut out as much of the affected tissue and bone, treated the area with radiation, and then closed it up the area like usual. She feels that the area probably wouldn't have gotten as bad as it has, or at least the severity of the pain. But this is still uncharted territory. If I find out anything else, or hear of anyone else with a problem like this, I will write about it again. You are not alone. It would be interesting to see if there are others out there with this same problem, but not aware of this being the reason for their problems with their prosthesis. Prayer does work wonders, and I keep praying for healing and the right doctors for me to go to.

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This is the exact same question that I asked my ortho surgeon. I wondered if the plastic runner that they use behind what's left of the knee cap could have something to do with sarcoid. I wonder if my immune system can't handle the plastic and titanium being inside me.

I had my knee replaced in Feb 2001 as it was down to bare bone against bone. Something "ate" all of the cartilage after an motor vechilce accident in 1993.

In Aug 2001, just a few short months after the knee replacement, I ended up being hospitalized for 3 weeks in 3 hospitals in neuro intensive care with acute kidney and liver failure. Just when I got my life back -- wham, I was slammed.

I did have a big tick bite on my leg at the time along with a problem with clotting. Only one doctor thought the insect bite was important. He wanted to run a test for Lyme disease but I was transferred to a bigger hospital so the test was never done.

At the last hospital, they didn't think I had sarcoid. They said it was epilepsy. The entire top of my head was numb on both sides from my ears up. I couldn't speak or swallow.

I had a very high fever (103) during the entire hospital stay. Fever is not one of the signs of sarcoid so that piece of the puzzle did not fit. Now I know almost all of the symptoms with the exception of sarcoid were from a tick bite.

The sarcoid in my chest lymph nodes was visible on x-ray BEFORE the knee replacment. I think they went after that diagnosis because it's all they had to go on. But I do have to wonder if my immune system was already faulty because of the foreign objects at the time of the tick bite.

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I was just going to write and tell you to get onto Majflas, but I see she has seen your post. Yah team!!!!!!

Bisphosphonates like Fosamax and Actonel can play merry hell with prosthetic joints. Although it ain't out there, many people who get joint replacements after being on these drugs for several years, find the joints never set and become stable. This is because these drugs which are made to stop bone breaking down and releasing calcium actually stop the natural break down and bone renewal process or recycling. This happened to both my mum and my aunt. Their joints loosened. Both of them went off the drugs, but it takes a couple of years for them to get out of your system. In the case of my mum's knee, just coming off the drugs help to re-tighten the joint. It kept locking on her before, causing her agony. Unfortunately for my aunt, she had been on the drugs for over 10 years. Although she went off the drugs about 2 and a half years ago, she has had to have hip replacements redone three times on each side. The last hip op of 6 she has had dislocated twice within a month of the op. So she had to have hip of number 9 (this is including putting back the dislocations) and they had to use glue plus several artificial tendons in order to stop the joint popping about. Fosamax just won't let bones and artificial joints knit together with bone matrix. So please be warned. If you plan on getting hips, knees etc done. Get of bisphosphonates.

Pris

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Hi Jowi

I thought I was crazy cause I got sarc in my arm aft a fall and now I read about you. And I was given a ton of NSAIDS too. I had a knot the size of a baseball beside my elbow. I have scars now from the huge bruise.
Thanks for sharing.

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Gonenatural,

Yesterday I went to a continuing education course on the Immune System (I'm a pharmacist) and they talked about how recent trauma can weaken the immune system and how some people get autoimmune diseases after trauma. Interesting, huh, considering our injuries.

I got to thinking during the conference about how our treatment emphasis is on suppressing the immune system (prednisone) as opposed to "normalizing" the immune response. I wish there was more science on this. Mostly we just have supplements without good clinical trials to prove efficacy.

I should probably start a new thread on this.

Thanks. Jowi

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Hi Jowi

Wow, that is very interesting and wish more drs believed in it. So far only one dr was on track but being an ER dr I didn't have time with him.

Do you know of any links I can use to read up on this subject? Maybe I could find at least a partial break through on how to help my body to heal faster due to a sudden jolt. I don't even have to be in a car accident but the sudden stop at times can be enough to put me in bed for a while in dire pain.

And thank You
GN

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I had my right knee replaced 4/23/08 and the left on 11/5/08. The right did really well, but, the second has had great difficulty with range of motion. I too am questioning if my problems to begin with were cause from my Sarcoid ( I was diagnosed in 1996). It would explain so many symptoms I have. The "bone on bone" pain is resolved, but, my knees feet and legs are still very painful. I still have to take pain meds along with plaquenil , prednisone and sulindac. Doctors in my state (NM) don't see much sarcoid.

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