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My son was just diagnosed with SAPHO syndrome. I've got a lot of questions, and I would like to connect with others who have had a similar diagnosis.
Thanks,
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SAPHO syndrome
- By walterscsr
- Posted June 3, 2009 at 6:39 pm · 6 replies
- In How my disease has changed my life
- Shared with the public
Explore topics in this discussion:
Surgery Acne Osteomyelitis Pain SAPHO syndrome Prednisone Back pain
6 replies
- Oldest first
- Newest first
- By karen98
- Posted September 2, 2009 at 3:33 am
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My daughter has CRMO, a related immune disorder. How old is your son?
- By Mom_of_SAPHO_child
- Posted September 19, 2009 at 10:02 am
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Hi, I have a 6 year old son that was diagnosed with SAPHO in April 2008. We have taken him to the NIH 3 times now. I know there is not a lot of information out there about this disease and would like to talk to you to see if there is anything that you may know that I don't and vise versa. Please contact me, my e-mail is karr25@hotmail.com
Karen
- By walterscsr
- Posted September 19, 2009 at 4:33 pm
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My son is 17. Once he was diagnosed with SAPHO. Getting this diagnosis was nothing short of a miracle. He was seeing a dermatologist that diagnosed it. The next day he was seen by a pediatric rheumatologist. He had severe acne, and he had started having back pain to the point of being taken to the hospital by ambulance. The rheumatologist treated him with a drug called Pamidronate. It was given intravenously three hours a day for three days. The beginning of this disease has been the scarriest in our case. The Pamidronate was used to protect his bones. He hasn't had the bone complications as of yet, and the drs. are hoping that by using the Pamidronate early, they will be able to protect his bones. He is on a few different drugs right now, and he seems to be doing well. He still has some pretty major problems if he forgets his meds.
If you have more specific questions, feel free to ask. I may not know they answer, but maybe by working together maybe we can figure it out.
- By SPRINGER
- Posted September 27, 2009 at 8:51 am
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HI. I AM A 57 YEAR OLD FEMALE WITH A DIAGNOSIS OF SAPHO. APPARENTLY I HAVE HAD THIS FOR YEARS WITH NO DIAGNOSIS UNTIL ABOUT 4 YEARS AGO. I HAVE HAD MULTIPLE SURGERIES IN THE CHEST AREA FOR FOCAL OSTEOMYELITIS AND MAY BE HAVING ANOTHER SURGERY IN THE NEAR FUTURE. I WOULD LIKE TO HEAR ABOUT TREATMENTS OTHERS HAVE HAD AND THE OUTCOME. THANKS...
- By walterscsr
- Posted October 2, 2009 at 12:27 am
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Check out the drug Pamidronate. I believe it interacts with the bones. It is a treatment they gave my son.
- By SPRINGER
- Posted October 10, 2009 at 9:09 am
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i was given this drug with good results for awhile. is your son being given prednisone ?
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