Living With Sapho

I am a 32 year old wife and mother to 3 beautiful daughters.  I have been diagnosed with SAPHO since 1996 and it is not an easy road.  I have pretty much constant pain in my hip, sternoclavicular joint, sometimes ribs, and more recently my back.  I have not started Methotrexate yet as I am holding out for it to be my last resort but it looks like I may be coming to that point sooner rather than later.  I am fatiqued a lot of the time, which is not condusive to raising 3 small (active) children and working full time.  I use NSAID's for pain management at the moment but think there is something more signifigant going on with my back lately and will probablyl have to go for another MRI soon to check it out.  I have also developed a lump on the side of my neck, it just never ends.  Went for blood work this morning to check everything out and see where my levels are at.  Has anyone out there found any good natural remedies, home therapies they have found to be helpful??

hmpaulin hmpaulin
1 Response Jul 29, 2010

I have SAPHO syndrome. I have taken naproxed, pamidronate, and humira. These have not been as effective as I had hoped. My rheumatologist is now recommending methotrexate. I would like to talk to someone who has taken methotrexate or a drug that has been effective.

I have been on Methotrexate along with Humira. I really had no side effects and was on these drugs along with pain meds for about 4 years now. As of last month these drugs no longer work, in alot of pain right now as I type. This sucks!! Not sure of my next move but the SS gets worst each year......

you might want to join the SAPHO group on Facebook. There are several members who talk about what meds have been helpful to them. Right now Methotrexate/Pamidronate/Mobic are working for me.