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Old 01-09-2007, 11:48 AM   #1
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DSchmidt HB User
Possible CRMO diagnosis

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.

Thanks in advance!

Last edited by DSchmidt; 01-09-2007 at 11:49 AM.

 
Old 01-13-2007, 08:01 PM   #2
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AliRah HB User
Re: Possible CRMO diagnosis

[url]http://www.healthboards.com/boards/showthread.php?t=453151[/url]

Best Wishes,
Ali

Last edited by AliRah; 01-13-2007 at 08:02 PM.

 
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Old 05-07-2007, 08:29 PM   #3
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Re: Possible CRMO diagnosis

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

Thanks!

 
Old 09-22-2007, 01:17 PM   #4
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Re: Possible CRMO diagnosis

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

 
Old 10-06-2007, 01:28 PM   #5
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Re: Possible CRMO diagnosis

Quote:
Originally Posted by momwithhope View Post
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.

 
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Old 10-07-2007, 02:18 PM   #6
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louise15 HB User
Re: Possible CRMO diagnosis

Quote:
Originally Posted by momwithhope View Post
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

 
Old 10-13-2007, 12:37 PM   #7
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AliRah HB User
Re: Possible CRMO diagnosis

Hi,

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

 
Old 10-15-2007, 12:14 PM   #8
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louise15 HB User
Re: Possible CRMO diagnosis

Quote:
Originally Posted by AliRah View Post
Hi,

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

 
Old 10-18-2007, 01:14 PM   #9
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louise15 HB User
Re: Possible CRMO diagnosis

Quote:
Originally Posted by AliRah View Post
Hi,

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

 
Old 10-24-2007, 07:26 AM   #10
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AliRah HB User
Re: Possible CRMO diagnosis

Hi,

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

 
Old 10-25-2007, 11:18 AM   #11
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louise15 HB User
Re: Possible CRMO diagnosis

Quote:
Originally Posted by AliRah View Post
Hi,

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

 
Old 10-25-2007, 11:56 AM   #12
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louise15 HB User
Re: Possible CRMO diagnosis

I cant find "Bone joint Hayem. I have tried to find Dr Hayem but not sure if looking in right place. Louise

 
Old 10-25-2007, 03:28 PM   #13
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AliRah HB User
Re: Possible CRMO diagnosis

Hi,

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.

HTH,
Ali

 
Old 11-07-2007, 10:43 PM   #14
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Re: Possible CRMO diagnosis

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

 
Old 11-08-2007, 09:28 AM   #15
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stefanau HB User
Re: Possible CRMO diagnosis

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

 
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boniva, enbrel, humira, indocin, infliximab, methotrexate, methylprednisolone, pamidronate, remicade, zoledronic



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