Hi. My son has been given a possible diagnosis of CRMO and am wondering if anyone knows if this can be caused by some kind of bacteria entering in during an un-related surgical procedure? He was a perfectly healthy 12 yr old boy, who needed to have a hydrocele repair. A month and a half after that, he started having severe neck pain. It is a long story and has been going on for over a year now, but besides the neck pain, he now has swelling and pain in his right clavicle. His blood work has only been off once, with the ESR being 113 and his C-Reactive protien being high. They did perform a needle biopsy of his C7, but did not grow out any bacteria. My gut still says "infection", but he is very asymptomatic. Any other ideas or questions I should ask? We will be visiting an Ortho and Peds Ortho doc at the Mayo Clinic in Feb. 2007.
I would love to hear back from you regarding your son's diagnosis. My son has had a similar experience in the right clavicle. It began as what appeared to be a fracture then to ewings sarcoma. Biopsies revealed a sterile environment with no inflamation. The condition has worsened over the last year but now with Aleve, Primal Defense and dietary changes the inflamation in the bone is receeding. My son has a bird that sits on that shoulder and at times scratches the skin.... You can't help but wonder, the doctors laugh at me, but I am a mom and that is what moms do
My daughter is 15years and was diagnosed with crmo at the age of ten. it started in her clavical and is now in her knees ankels wrists and feet. she has had many drugs steriods sulfzalazine and pemidronate and is now on methotrexate. She did have a few months while on this drug pain free but it has now come back. we live in the uk and the Doctors hear have seen quite a few cases. I was wondering if there is any new treatments I have not heard of. Louise
Have you seen a rhumotologist? Ours has been the the one that is there since we started withour daughters CRMO diagnosis. It too 4 years and the right doctor to even diagnose her. She is 8 but was always healthy.
I hope you son finds a pain free life.
My daughter was diagnosis within two week, five years ago. she sees a rhumotologist quite reguler and only had flare ups every couple of months at first. but the last two years there has been no let up and she is in contant pain.
The following user gives a hug of support to louise15: CRMOparent (06-24-2011)
It is hard to see your child in pain. If my daughter misses her indocine which she takes 25mg three times daily she has pain. The next step for us is either steroids (pretnazon) or methtrexate.(a chemo drug)
I hope you find her someone who can help her pain.
best of luck
beth
dont know what indocine is. my daughter has had steroids, they where great while she was on them but as soon as she came off them the pain was back. She is on methtrexate which she has injection evey week at the hospital, it was great when she first went on it but now it has stoped working. Her doctor is talking about a new drug, I will fined out when her next appointmnet is. Have you tried pamidronate my daughter had 6 months pain free when she first tried it. good look. louise
I had six inufsion of Pamidronate about 3 years ago. It helped initally but it stop working after that.
There are recent studies with respect to Boniva and Zoledronic Acid which are very promising. These drugs are infused in 15mins every six months and have less renal implication that Pamidronate.
Boniva is available in US and most countries except Canada.
I had six inufsion of Pamidronate about 3 years ago. It helped initally but it stop working after that.
There are recent studies with respect to Boniva and Zoledronic Acid which are very promising. These drugs are infused in 15mins every six months and have less renal implication that Pamidronate.
Boniva is available in US and most countries except Canada.
HTH,
Ali
Thanks, My daughter is going into Hospital tomorrow, to see her Consultant I will mention this to her I should think it would be available here in the UK.
thanks again
I had six inufsion of Pamidronate about 3 years ago. It helped initally but it stop working after that.
There are recent studies with respect to Boniva and Zoledronic Acid which are very promising. These drugs are infused in 15mins every six months and have less renal implication that Pamidronate.
Boniva is available in US and most countries except Canada.
HTH,
Ali
Have you heard of infliximab. My daughter has been offered this mixed with methtrexate.
louise
I took 4 infusion of Remicade(infliximab) last year. It did help greatly with the inflammation levels initially but I developed early sign of lupus induced and quite a bit of other abnormalities wrt to my blood tests.
There has been few studies on usage of TNF meds in particular Remicade for CRMO and Sapho but you should really look at the side effects of these meds in the long run and then make your own decision. CRMO\Sapho is a such an orphan and rare condition and taking meds such as TNF are too risky IMO.
As I stated in another thread, Dr. Hayem in Paris has about 120 Sapho patients and if you do a search on “Bone joint Hayem”, you will see a very interesting and informative presentation.
I took 4 infusion of Remicade(infliximab) last year. It did help greatly with the inflammation levels initially but I developed early sign of lupus induced and quite a bit of other abnormalities wrt to my blood tests.
There has been few studies on usage of TNF meds in particular Remicade for CRMO and Sapho but you should really look at the side effects of these meds in the long run and then make your own decision. CRMO\Sapho is a such an orphan and rare condition and taking meds such as TNF are too risky IMO.
As I stated in another thread, Dr. Hayem in Paris has about 120 Sapho patients and if you do a search on “Bone joint Hayem”, you will see a very interesting and informative presentation.
Ali
Thanks Ali, I think your right about this drug. She is only 15 and I dont want to make her worse. I am going to have a look at this Doctor. the Doctors here keep telling me it will burn out, but when I dont know. Again thank Louise
Try the following search "Valuable lessons from SAPHO syndrome ". There is PDF of it somewhere avaialable on the internet. You could also email Dr.Hayem and he will be more than happy to send it to you.
Hi. My 12 year old daughter has been diagnosed with CRMO and has active lesions on her lower mandible, spine, acetabulum, pelvis and both feet. She has just seen a Paediatric Rheumatologist who wants to try her on IV Methylprednisolone, followed by IV Pamidronate once every 3 months and methyltroxate. WHilst I am okay with the steroids, the other 2 scare the hell out of me. My daughter has braces and apparently the Pamidronate exposes the user to a higher risk of Osteonecrosis of the Jaw. Noone can tell me whether or not she can continue to have orthodontic treatment whilst she is having parmidronate. My daughters DR is the only Paediatric Rheumatologist in our area so I cant get a second opinion and CRMO is almost unheard of in Australia. Has anyone out there had a child with braces on Pamidronate or any other bisphosphonate?
Last edited by jram01rebecca; 11-10-2007 at 03:08 PM.
Reason: Remove identifying details
Hi K,
Although I'm 21, I've also had CRMO since 17 (now realised to be full SAPHO), with the CRMO presenting in the mandible. I saw a great oral surgeon here in Adelaide, South Australia who is head of the Oral & Maxillofacial Unit at the Royal Adelaide Hospital/Adelaide University by the name of Prof. Alastair Goss. He has a significant research interest in osteonecrosis of the jaw (ONJ) due to bisphosponates and as he performed several operations on my jaw would not let me use them (as you seem to be aware, the risk of bisphosponates incduced ONJ appears to increase with any recent oral surgery or dental work). Although some of my other doctors disagreed at first, they now all seem to agree it was not worth the risk, as do I.
I have been on oral prednisolone for a couple of years now and although it does work well, does have a range of side effects I'm sure you're aware of too. I also started methotrexate just a few weeks ago which also has it's fair share of side effects, but given the other options sounds like it is probably the best choice for both of us. If the methotrexate does not cause any major improvement I am also preparing to start infliximab (Remicade) which is a TNF inhibitor, but we expect this will reduce inflammation, not so much any actual growth, and it's use is more debatable than the other drugs mentioned.
Luckily my jaw has not been a problem since starting the prednisolone, it has been inflammed a few times, but has not regressed to the growth that originally required surgery to correct several times. I have been on an a range of immunosuppressants, first aziothioprine which was too weak, then cyclosporin which has bad side effects and is starting to become ineffective for me, and now moving to methotrexate. These have been combined with the prednisolone all this time or the doses of prednisolone I would have needed (probably >100mg/day) would have needed to be given by IV too, but combined with immunosuppressants I'm on about 30mg/day.
I am more than happy to share my dozen or so doctors here in Adelaide, but until last month I had not been seeing a rheumatologist, and although they have all done very well with me, I don't think any of my doctors had treated any CRMO/SAPHO patients before me.
Please do contact Prof. Goss yourself or get one of your doctors to and mention my name if you wish, I am sure he would be happy to help. I know my doctors have done a lot of communicating around the country and abroad when trying to investigate treatment options and the condition itself, and while there is no real "proof" of anything working as such (and we're too few, and all so unique with this), there are a number of journal articles that suggest these are possible options.
Stefan
Last edited by stefanau; 11-12-2007 at 06:38 AM.
Reason: remove user's identifying details
Thank you Stefan. My girls Oral Surgeon also is dead against using bisphosphonates and I would tend to agree that it is not worth the risk. We are meeting with her orthodontist today and I am fairly sure he will not be supporting their use either.
I have been corresponding with a Professor at the Uni of Iowa who also suggested Infliximab but our Paediatric Rheumatologist says its not covered under PBS. I do believe however that infliximab has been approved for use in some conditions. Do you know if this includes CRMO/SAPHO? I also beleive it is extremely expensive otherwise. Is it oral or IV?
K
Last edited by jram01rebecca; 11-10-2007 at 03:07 PM.
Reason: Remove identifying details
Hi K,
Infliximab is only on the PBS for rheumatoid arthritis or ankylosing spondylitis, and more recently Crohn's disease or psoriasis. However, your local hospital can choose to fund the drug for other conditions too (which then should only cost you as much as a normal hospital script, $9.80 or so), but the local hospitals also don't have a lot of spare money (possibly even more so in QLD), and the sheer cost of these drugs can take a large chunk out of their drug budget. The dose/cost depends on body weight, but for even a child is most likely around $20k/yr (which no private health other than perhaps the defence force covers now), and it is an infusion that must be given in hospital, usually requiring only a few hours in an ambulatory care ward. I'm not sure what actually needs to be done as far as approving the drug to be used to treat conditions like CRMO/SAPHO at the hospital, I think that's what has been happening here the past month, but I also have other conditions that fall under the hospital's previous approvals like pyoderma gangrenosum, and Crohn's (not severe enough to meet PBS requirements).
Infliximab also should generally be taken with an immunosuppressant as well to reduce the risk of the body building up antibodies to the drug, and methotrexate is the most commonly used. As with my treatment plan, I'd leave infliximab as the last resort as out of all of them it's probably the biggest gamble. We're currently hoping methotrexate alone will work (allow us to stop cyclosporin and slowly wean the prednisolone), but if it doesn't we will be adding the infliximab as well.
Stefan
Last edited by stefanau; 11-12-2007 at 06:38 AM.
Reason: remove user's identifying details
Thanks again Stefan. It is nice to hear from soemone who actually has the disease rather than a DR!
I think we will just start with the Prednisolone and see where we go to from there. We also have the script for Methotrexate but I am a bit scared about that one as well. What side effects have you experienced with it?
A family member has had crohns since his mid teens and it has been in remission now since 20yrs old. He has had a complete colon and partial small bowel removal and has not had symptoms since. I believe that there is a very strong connection between the 2 diseases and it is unfortunate that you have both.
My girl has a very large lesion in her lower mandible which has resulted in her jaw being quite swollen on one side. Her Oral surgeon had said that he can fix this when she grows out of the disease but given that she is only 12 this could be some time. From your experience is it likely that the bony growth and swelling will recontour on its own? The Paediatrc Rheumotologist says that Pamidronate would help this reshape as well. Have you heard of this? She recently has had a biopsy of her jaw so I expect that this would increase the risk of ONJ if she did go on Pamidronate.
K
Last edited by jram01rebecca; 11-10-2007 at 03:06 PM.
Reason: remove identifying details
Prednisolone is in some ways probably the "safest" of the options too, it has a lot of bad side effects, especially for a child, but we know what they are and there aren't too many unknowns. Methotrexate is a much more potent drug and I'm not really the best person to ask about that yet as I've only just started. In general, other than my blood pressure adjusting (resulting in me being very light headed a few times shortly after increasing a dose) I have been lucky so far. However, we also made the mistake of jumping too fast from 10 to 25mg which gave me diarrhea, abdominal pain and made me excessively tired. We have since dropped back to 15mg which has been fine so far.
I don't know how your daughter is with needles, but we chose to have the methotrexate injected by my GP as this can reduce the side effects versus taking it orally. The tablet would probably be otherwise preferable in her case, but I mention this as the main side effects this is known to reduce are GI related, and with a family history of Crohn's this may be something to at least consider. Although methotrexate is usually given in tablet form, when it is used to treat Crohn's/colitis it is often given as an injection for these reasons.
I would link you to posts I've made elsewhere with my history but that is against the rules on this site, so in brief, my problems started with the jaw swelling, but the bone was thickening up so much that it was assumed to be cancer until the biopsy returned, and the intesity of the pain (and size of the growth) required my oral surgeon to operate pretty quickly. After that happened a few times and I started the prednisolone it's only been inflammed, it hasn't actually grown, so I don't know (and haven't read) about this reshaping theory.
Stefan
Last edited by stefanau; 11-12-2007 at 06:38 AM.
Reason: remove user's identifying details
I have been through all meds such as Pamidronate, Remicade, Humira, Enbrel.
I did speak to that doctor at Univ of Iowa 3 years ago and she is the one who kept mentioning Remicade. Please note that many of these doctors are more interested in research and not the well being of their patients in long run.
I have posted earlier that biologics such as Remicade, Humira should not be used for a condition that is not well understood by medical community. These drugs have so many adverse reactions and I would strongly suggest you will do your due diligence before commencing biologics for your daughter.
All together, I took 8 infusion of Pamidronate over the past 3 years and there is not a single oral surgeon in Canada who is willing to do any major surgery on me.
The half-life of Pamidronate is like 10 years. I did get some benefits from Pamidronate but it will lose its effectiveness after a while. It also has serious renal complication as well.
I am not a good candidate for steroid as I have acne (A in Sapho) and have not tried MTX.
I am so sorry that your daughter is going through this and I wish I would have some answers for you.
I know of few people besides Stefan who have mandible lesions but it resolves on its own but they were adults.
All the best to you and your daughter.
Ali
Last edited by AliRah; 11-12-2007 at 06:59 AM.
Reason: remove identifying details
