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Old 12-28-2005, 07:36 PM   #1
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Painful and swollen sternoclavicular joint, has anyone else experienced this?

Thanks for reading!

I am a 25 year old female with a swollen sternoclavicular joint. It looks like a golf ball and my clavicle is protruding too. I was referred to a rheumatologist and he said he has never seen this before but this may be arthritis. I will be going for a bone scan and my x-ray is negative. It has taken over my life because i have 2 small children and i can no longer pick them up or change their diapers. Has anyone ever experienced anything like this before?

 
Old 12-31-2005, 08:41 AM   #2
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Re: Painful and swollen sternoclavicular joint, has anyone else experienced this?

Hi,

I also had swollen left SCJ two years ago. It was the start of an emotional roller coaster ride for me.

Do you have any skin condition?

I was diagnosed with Sapho and its hallmark is swollen SCJ. Do a search on Sapho and sternoclavicular.

Most RA doctors are not aware of this condition.

Let me know if you need any other info. All the best.

Ali

Last edited by AliRah; 12-31-2005 at 08:42 AM.

 
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Old 12-31-2005, 05:52 PM   #3
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Re: Painful and swollen sternoclavicular joint, has anyone else experienced this?

hi ali,
thanks for reading my post. i went for the bone scan today and it turns out i have a massive infection in my joint. it probably means 6 weeks of i.v. antibiotics but i have to wait over the weekend for more tests. thanks for your concern and i will keep the board posted.

 
Old 12-31-2005, 07:25 PM   #4
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Lightbulb Re: Painful and swollen sternoclavicular joint, has anyone else experienced this?

Make sure that you do a blood culture and bone biopsy before commecing IV.

SCJ is unusual joint to become infected. It is only seen with HIV, drug users and TB infection.

All the best.
Ali

Last edited by AliRah; 12-31-2005 at 07:29 PM.

 
Old 01-03-2006, 04:24 PM   #5
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Re: Painful and swollen sternoclavicular joint, has anyone else experienced this?

Hi! I read your posting. I have been sick for three years now which started with a golf ball protrusion in my clavicle. I became very sick where I couldn't move my entire body. I went to the ER and was admitted. I had several doctors look me over in the ER. They had no idea what was wrong. I was released and have been seeing a Rheumatologist ever since. I have been to many specialists, second opinions, etc. No one could give me a diagnosis. I was recently diaganosed (by process of elimination) with AS (Anklosing Spondalylitis). I do not have any of the main symptoms of this disease. I still have the lump and suffer from chronic pain in that area. I have been on many medications, nothing has worked. I moved back to CT from LA due to this illness. I was 32 when I noticed the lump. I believe I may have been exposed to Lyme Disease when I was on vacation. I noticed the lump and became very sick when I returned to LA. It's something to think about. Any back pain? Neck pain? What state do you live in? I wish you the best. I am thinking about you.
Stacey

 
Old 01-07-2006, 06:14 AM   #6
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Re: Painful and swollen sternoclavicular joint, has anyone else experienced this?

hi stacey,
now that you mention it, i do have back and neck pain. they tested me for lyme disease and it was neg. i live in ny. what types of tests did u have and what were your results, i.e. bone scan etc.? they gave me a preliminary diagnosis of osteomyelitis. i would really appreciate any info u could give me because you know, this is a very scary time.
anne

 
Old 01-07-2006, 11:40 AM   #7
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Re: Painful and swollen sternoclavicular joint, has anyone else experienced this?

Hi Anne,

Try to get into one of the better teaching hospital that has a RA dept.

Quote from emedicne:

Osteomyelitis is an infection of bone and bone marrow and can be subdivided into acute, subacute, and chronic stages. Chronic osteomyelitis may appear as such at the initial presentation, as not all patients show progression through the 3 phases. Rarely, a sclerotic nonpurulent form of osteomyelitis occurs; this is termed Garrès sclerosing osteomyelitis. Other related disorders are chronic recurrent multifocal osteomyelitis; tuberculous osteomyelitis; and synovitis, acne, pustulosis, hyperostosis, and osteitis (SAPHO) syndrome.

What you describe is sterile osteomyelitis which is one of the first DX of Sapho.

You should also do ESR and CRP blood tests. These will show inflammation in the blood.

You could also get tested for HLB27 for AS and Reactive arthritis antigen plus lupus.

Did you recently have any traumatic events?

Ali

Last edited by AliRah; 01-07-2006 at 11:41 AM.

 
Old 01-08-2006, 02:23 PM   #8
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Re: Painful and swollen sternoclavicular joint, has anyone else experienced this?

hi ali,
my bone scan showed some bone erosion. esr was normal as was my wbc and ra factor and lyme disease and lupus. i am going for a second opinion. they want me on 6 weeks of antibiotics. i never had any trauma, other than my 9 month old throwing her head back and constantly hitting me in that area with her head. that is why this is so weird and i am vey confused.
thanks to everyone who is still reading and helping. i appreciate all you are doing to help!!!!

anne

 
Old 01-08-2006, 03:01 PM   #9
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Re: Painful and swollen sternoclavicular joint, has anyone else experienced this?

Hi Anne,

Based on your blood work. You do not have infective osteomyelitis. CT\MRI will help in proper DX.

All the best.

Ali

Last edited by AliRah; 01-08-2006 at 03:02 PM.

 
Old 01-08-2006, 05:13 PM   #10
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Re: Painful and swollen sternoclavicular joint - long reply

Good evening all. I signed in here at the request of a dear friend AliRah. He must have thought that I have some info worth sharing with you all.

Some of the symptoms and experiences that you have been sharing in this thread are very closely related to SAPHO Syndrome. You can do a google search on SAPHO to find out more.

I'd like to share with you a bit of my own background with the idea of arming you with enough information that will help you aid your doctor(s) in making a correct diagnosis. Either to rule it out or make a positive dx (diagnosis).

SAPHO is an acronym for the following (group of) diseases:
S = sinovitis
A = acne of a particular type (Propionibacterium acne, or P. acnes for short)
P = pustulosis - aka: palmoplantar (sole of foot and palm of hand) pustulosis. (is commonly mistaken for a specific type of psoriasis and mistaken as unusual forms of eczema. (Commonly prescribed or OTC dermatological treatments often fail)
H = hyperostosis - aka: sterno-costo-clavicular hyperostosis
O = Osteomyelitis.

I can tell you that you do NOT have to have all of the above in order to have a diagnosis of SAPHO. 2 yrs ago when the RA that I was referred to could not find an answer, I stumbled across SAPHO on a web-researching effort of my own. I took to him the information that I gathered on SAPHO and he "looked it up." His comment: "You probably do NOT have this syndrome based on the fact that you don't have acne or this or that." 6 months later, I had a sternal biopsy. Pathology was sent to John Hopkins hospital and results came back as "sterno-costo-clavicular hyperostosis." It wasn't until about 3 days after these results were given to me that I finally put my finger on where I had heard of this before. It was in the research that I had taken to my RA just 6 months earlier. Further research found that there are certain symptom criteria that a physician should be aware of in order to spare the patient from excessive and sometimes unnecessary testing and biopsy. A simple CT and MRI can help confirm a diagnosis. Especially when no other cancers, infections, etc are coming up as positive in the blood and other tests. A "hot spot" in the MRI and CT scans that cannot otherwise be explained, might signal a physician of SAPHO or sterno-costo-clavicular hyperostosis. These scans can also show a shadow on the films that look like and have been referred to as a bulls head. Darkened areas across the front collar bone, over the shoulders (horns) and down the center of the sternum (face or head of a bull).

Regardless of whether a biopsy should or should not be given in an attempt to confirm SAPHO - I tend to sway towards the "should" side of it. Merely to confirm or rule out the presence of infection in the bone. (IE: osteomyelitis)

Up until my diagnosis, doctors continued to ask me if I had experienced any trauma to my sternum at any time in my life. Yes, I had. But none that fractured the sternum or caused me pain or damage.

I had also been asked to give up my health history for the months or days preceeding the onset of pain in my sternum. I had just gone through a very serious bout of the flu and a cold. When I was feeling better, I had gone outside to shovel snow. Had no problems. 3 days after shoveling snow, I woke up in the morning unable to get out of bed and was in pain. Still, none of the tests could confirm that any of the above was the cause. No fractures, etc.

I saw a sundry of doctors over the course of one year while searching for the one that had all the answers. I visited a cardio thoracic surgeon last. The results: a biopsy with a subsequent diagnosis of SCCH. (short for sterno....). The thoracic surgeon admitted that he had never seen a case of SCCH and I'm sure this boosted his education and field of expertise.

My experiences with SCCH and PPP (palmo-plantar pustulosis):
First notable symptom began in January 2003: PPP on palm of left hand, and soon showing up on the right hand. Dermatologists failed at diagnosis and treatment.

March 2003: Sternal pain. Chair and bed ridden. Pain relievers that worked: Tylenol for Arthritis and Ultracet (a prescription form of a Tylenol and Tramadol mix); Vioxx (which was later removed from the market). Anything stronger like Vicodin and morphine (which was administered after biopsy surgery) offered absolutely no relief. Research has found that many SAPHO sufferers do find better relief from pain via NSAIDs than other more potent forms of prescription pain medications. Why? Because NSAIDs tend to offer relief as anti-inflammatories.

April-May 2003: The worst days of pain in my life. So bad that I could not bend over without my chest feeling like it was breaking in half and falling out of my body. I could not lift anything. Not even a glass of water without pain. I could not exercise or raise my arms above my head. I wore a sports bra to bed to keep my breasts from pulling on my bones - this helped especially during sleep. I could not sleep on my sides. I added more bed pillows to rest my shoulders and arms on when I slept on my back and found my pain was less when I slept sleeping as upright as I possibly could. Sleeping itself was the most painful time. I did not know what restful sleep was anymore. Hence, depression followed. I rolled out of bed in the mornings and needed help getting out of a chair. Could not pull weeds to garden. Basically, anything that the sternum or ribs and shoulders were involved in to physically move, caused enough pain to keep me from performing life as I knew it.

December 2003: Returned to the working world. Still had pain but I was managing on Ultracet. Palms cleared up but bottom of right foot began with symptoms. Depression worsening.
February 14, 2004: Biopsy.
March: 1 year to the day of the onset of my pain, a diagnosis of SCCH was returned to me.
Post biopsy: No pain for 3 months. The surgeon admitted to having taken as much of the inflammed bone as he could as well as some good bone for the biopsy.
August 2004: Because pain was returning I decided to begin treatment with methotrexate to slow down the progression (hopefully) by calming the inflammation. Depression returned. Started on anti-depressant which seemed to help in conjunction with the anti-inflammatory (mtx) by lessening the "feeling" of pain.

Today: Since August of 2004, methotrexate has helped me. But let it be understood that I occassionally have flare ups that methotrexate (mtx) cannot help. On those days, I supplement with Ultracet. Mtx has also been tried with other SAPHO patients and failed over time. Varying degrees of SAPHO require varying trials of medications. Each person's unfortunate experience with sapho is different from another's yet we all have something in common. A rare syndrome. One that some doctors classify as arthritic and others say "Nay! It's a deficiency;" while others haven't yet heard of it, and although it may be classified by some physicians to be arthritic, the FDA has not approved ANY arthritic medications as a treatment for sapho in the U.S.

So what causes it? Much of the research and ALL of the current clinical trials are being performed in countries like Japan, Germany, England, etc. (The countries where this syndrome afflicts many more people). It is unclear whether it is hereditary. It is believed to be hereditary in a certain Jewish culture and a test can be taken for this. Incidence is also higher in Germans. Rheumatoid factor doesn't have to be prevelant nor does arthritis of any type. It is considered, however, to be an auto-immune (immuno-suppression) disease. Cause unknown.

I hope that sharing my experience and research will give you a better understanding and guidance to a definitive diagnosis. I also hope and pray that no others will have to experience this syndrome. It is not as easy as taking a medication because often times medications do not work and many of us experience daily pain that goes beyond chronic. My pain was so bad at times I swore I had cancer and was mis-diagnosed.

In any event, for a lack of more appropriate words, I gladly share my knowledge and experience if it will educate patient and doctor; offer hope, whatever that needs to be; and relief from fear of the unknown. Once I had my diagnosis, I felt like I could move on with my life and set a goal of pain-free living. It helps to be "positive" when we can.

If any of this sounds familiar to you (re your own situation); and you currently have similar pain and no diagnosis, please consider researching sapho for you and your doctor.

Regards,
Kathy N aka Bookchick49

 
Old 01-12-2006, 11:45 AM   #11
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Re: Painful and swollen sternoclavicular joint, has anyone else experienced this?

hi kathy,
wow! what a story. it must have been so hard not knowing. i know how that feels. your story sounds similar to mine. i mentioned this to my doctor and he suggested an mri for tomorrow. hopefully we will find some answers then! thanks for sharing your story and i hope all is going well for u now.
anne

 
Old 01-16-2006, 12:57 PM   #12
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Re: Painful and swollen sternoclavicular joint, has anyone else experienced this?

hi all,
just an update...the mri showed a 2x3x2 cyst. that's all i know. i will be seeing an orthopedic surgeon tomorrow. i would appreciate any replies.
anne

 
Old 03-09-2006, 05:48 PM   #13
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Re: Painful and swollen sternoclavicular joint - for Anne

Hello Anne,
How are you doing? I haven't been to the group for awhile and just read your replies. Hope all is well and look forward to hearing your update.

Regards,
Kathy N aka Bookchick49

 
Old 03-10-2006, 07:48 PM   #14
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Re: Painful and swollen sternoclavicular joint, has anyone else experienced this?

hey kathy,
i am now 1 week post-op. turns out it was something called an aneurysmal bone cyst or a benign tumor, which is very rare in the clavicle. i was referred to an orthopaedic oncologist in nyc who removed it and had a bone graft from my pelvis to my clavicle. now i start my 3 month recovery. it was just great to finally have some answers. i really appreciate your concern and hope all is well with u 2. if u have any other questions i would be happy to answer!

take care,
anne

 
Old 04-11-2006, 01:49 PM   #15
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Re: Painful and swollen sternoclavicular joint, has anyone else experienced this?

Hi to all,

I have a painful sternoclavicular joint which is swollen and sore when i touch it what is sapho what dose it mean i was going to look it up but counldnt find anything at all.

How long should i leave it before going to the doctors.


Advise please.


Diligent.

 
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