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Arthritis board

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.

Kathy N aka Bookchick49