Discussions that mention pamidronate

Rare Disorders board


Quote from like_poison13:
Hi there-
I'm new here and I'm hoping to find other people with this rare condition. I was diagnosed with sternocostoclavicular hyperostosis in march and have had a very hard time finding information about it. Fortunately, I'm working very closely with a brilliant doctor here in DC that was able to diagnose me quickly. None of my other doctors have even heard of SCCH and its frustrating to try to explain something that i barely understand. The doctors who think that they understand this condition, often get it confused with one that presents similarly (SAPHO). Eventhough I'm aware that there are only around 59 known cases of SCCH in the world, including myself, I'm hoping to find someone here that has experience with this illness. thank you. take care.

A.


Hello poison13,
I have sterno-costo-clavicular hyperostosis which is one of 5 diseases in the sapho group. You do not have to have all of the diseases in the sapho group to be diagnosed as having "sapho." SCCH is a "sapho" syndrome disease. If you do a google.com search on "sapho syndrome" you will find much more about the syndrome and SCCH.

I was diagnosed a couple of years ago after a year of doctors and donating buckets of blood for blood tests. lol You're fortunate that you didn't have to wait as long or - had a knowledgeable physician. Many doctors today, still have no idea what sapho is and want to call the SCCH something else.

Where is your main area of pain? Are you on pain management?

SAPHO may be rare but I'm willing to bet there are a few more than 59. Last I heard there were at least 10 (ten) documented cases in the U.S. I don't know if they added me to that list! lol But I'd love to know how they come up with these numbers given the fact that SAPHO's presence is more prevelant in the countries of Germany, France, Japan and recently England. This is where 99.9% of the reports of clinical studies are generated from. There are no clincial studies in the U.S. as of yet. And very few if any medical reports writen by U.S. doctors.

Research is long and hard and you really have to dig. Ask me how I know! LOL If you'd like to know more about my experiences with SCCH, and what I know / learned about SAPHO Syndrome, you can read my posts under the Arthritis category of this board or ask me.

To offer a tip / words of advice: If you are in pain, pain mgmt is important for a couple of reasons. Although there is no cure as of yet, sapho / scch are considered auto-immune (or immuno-suppression) diseases. The pain from scch is often reduced with the aid of anti-inflammatories. It is not known whether this is the correct line of defense but these types of meds have been helping people with sapho / scch. There currently are no drugs in the U.S. that have been approved by the FDA for sapho or scch. However, there are some that can be prescribed without question by insurance - drugs that are common to arthritis. Methotrexate is one because it is cheaper than the others. No one, including myself, appreciates this reasoning. Especially given the fact that we pay for insurance to help us get well and we should have to be "stuck" in limbo over a rare syndrome. Makes one feel left out in the cold.

Although I do not agree that scch / sapho is an arthritic condition, I do agree that many meds that aid arthritis are helping those with sapho but it is by trial and error. What helps you might not help me and visa versa. I may require less methotrexate than you do, as another example. Any drug you take without an anti-inflammatory characteristic, may not help as well as a simple over the counter remedy commonly known as Tylenol (and as a NSAID). You will find as time goes on what OTC drugs help and which prescription meds do and don't help. But most research has shown that NSAIDs work best in our condition. Arthritic and RA patients can hardly say the same. Hence, why I believe sapho isn't in the arthritic realm but may deteriorate the bones to feel that way. People who are on stronger meds, have endured far more pain and deterioration.

Which brings me to another reason for the immediancy of pain management. It has been documented that people who suffer from RA, have a far better chance of less debilitation and deterioration if they get the proper treatment within the first year of diagnosis or onset of the illness. I have a tendency to believe (at least currently), that this is what may have helped lessen the severity of my condition.

If you can keep the inflammation down, you can slow the progression of the disease. Is there remission? I have read some clinical studies where remission was made possible with Infliximab and Pamidronate. Both of which are in the same family of biophosphanates. (I think I spelled that right?). Anyhow, it might also make a difference based on the severity of an individual's case. Some reports told of remission with Infliximab after 3 to 6 sessions. In the study, some of the others never did attain remission. As far as Pamidronate, this was tried with people who had the HLA-B27 gene with success and a good rate of remission. It's also been tried on those without the HLA-B27 and results were similar to results of Infliximab. But I should state that the medical reports are always being posted somewhere on the web and updated with new findings. Much of what I found and read were a couple of years old. Recent research has found a few updates but mainly "awareness" type updates or a new study overseas.

Hope this gave you some background, information and food for thought to start another search or ask more questions. Feel free to ask again ... I'll help if I can.

Best wishes!
Kathy