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    Old 11-08-2007, 02:08 PM   #16
    jram01rebecca
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    Re: Possible CRMO diagnosis

    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

     
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    Old 11-08-2007, 05:29 PM   #17
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    Re: Possible CRMO diagnosis

    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

     
    Old 11-08-2007, 10:10 PM   #18
    jram01rebecca
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    Re: Possible CRMO diagnosis

    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

     
    Old 11-09-2007, 03:49 AM   #19
    stefanau
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    Re: Possible CRMO diagnosis

    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

     
    Old 11-09-2007, 07:35 AM   #20
    AliRah
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    Re: Possible CRMO diagnosis

    Hi K,

    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

     
    Old 11-09-2007, 11:27 AM   #21
    jram01rebecca
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    Re: Possible CRMO diagnosis

    Thankyou both Ali and Stefan.

    I am really not comfortable with my girl taking Remicade or Pamidronate and even moreso after your postings!

    We will begin on the prednisolone this week and see how she goes over the next couple of months. Hopefully this may be enough to settle her down.

    Stefan you mention that you are on 15mg of MTX. How often is this dose? Our Dr wants to start her on 20mg oral once per week.

    Ali, at what age did your condition start? Did it start as CRMO then progress to SAPHO?

    K

    Last edited by jram01rebecca; 11-10-2007 at 03:09 PM. Reason: remove identifying details

     
    Old 11-09-2007, 09:40 PM   #22
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    Re: Possible CRMO diagnosis

    K,

    I hope the prednisolone works well for your daughter. I am taking 15mg/week of methotrexate currently with the aim to build up to 25mg/week this month. I don't know about in paedatrics, but 20-30mg/week is what is generally considered to be a useful dose for these kinds of conditions. Having the dose subcutaneously is more effective in general too, but I don't know if they need to build up the oral doses as well, or just for subcut.

    Don't be too spooked by the fact it's used as chemotherapy in cancer either, it still isn't a nice drug, but they use doses more like 3-5g/day, over 1000 times what we're talking about.

    There is a little consumer medical information sheet on methotrexate (and corticosteroids which includes prednisolone) provided by the Australian Rheumatology Association (or alternatively at pbs.gov.au) which this won't let me post. If she does go ahead with methotrexate it is also important she takes additional folic acid to reduce the side effects

    Stefan

    Last edited by stefanau; 11-12-2007 at 06:38 AM. Reason: remove user's identifying details

     
    Old 11-10-2007, 03:29 PM   #23
    jram01rebecca
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    Re: Possible CRMO diagnosis

    Thanks Stefan.

    Your info has been extremely useful. Our ortho has indicated that bisphosphonates inhibit movement of the teeth so it looks like we cant really consider that option anyway until we at lest get her teeth into place.

    Wish us lock for this week!

    k

     
    Old 11-11-2007, 07:58 AM   #24
    AliRah
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    Re: Possible CRMO diagnosis

    Quote:
    Originally Posted by jram01rebecca View Post
    Thankyou both Ali and Stefan.


    Ali, at what age did your condition start? Did it start as CRMO then progress to SAPHO?

    K
    I started developing acne at age of 24. I am 45 now. I had a bad car accident 17 years ago and we think that's what started the immune reaction.

    Most of my issues are at sternum, clavicle and lumbar spine.

    Unfortunately, docotors can not tell me exactly what's my condition(SCCH, CRMO,etc) they just say it is Sapho as I have "A" for Acne, "H" for Hyperostosis and "O" for Osteitis.

    Antibiotics are the only drugs that really work for me as they control the Acne and most of joint issues. It stated in many articles for Sapho that P.Acne is the triggering agent.

    There have been studies of successful treatment with antibiotics such as Zithromax, Doxcyline and Biaxin.

    NASID can also be helpful but we must consider the damage to gut and GI tract and I am not a good candidate for it due to colitis.

    There is also few reports of diet changes that resulted in remission. I was able to reduce my inflammation markers last year by eliminating starch but after Remicade I have gotten much worse due to immune reaction to mice protein.

    HTH and Good luck with your appointment. Please keep in mind that doctors do their best but they lack information about this conditon and we need to provide them with as much information as we can.

    Ali

     
    Old 11-11-2007, 02:03 PM   #25
    jram01rebecca
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    Re: Possible CRMO diagnosis

    Thanks Ali. I will have a look at those.

    I am going to take her to a nutritionist as well over the next few weeks as I know that, in Australia, many consider diet to impact on other autoimmune diseases. Anything is worth a try!

    K

     
    Old 11-24-2007, 05:56 AM   #26
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    Re: Possible CRMO diagnosis

    Quote:
    Originally Posted by jram01rebecca View Post
    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
    Hi my 15 year old daughter has CRMO and has tried many of the drugs she is on methetrxate at the moment but is having Infliximab starting this week. nome of the other drugs worked and this is one we hope will. she has had many infusions of bisphosphonates and steriods but it never worked I will let you know how she gets on.
    Louise
    England

     
    Old 12-18-2007, 03:25 AM   #27
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    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
    Hi Ali,
    can you tell me how long it took for infliximab to work, my daughter has had two infusiona and her pain seems to have incressed. all her glands are swollen and I am worried that the drug could be making the condition worse.
    Thank you
    Louise

     
    Old 12-18-2007, 06:02 AM   #28
    AliRah
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    Re: Possible CRMO diagnosis

    Quote:
    Originally Posted by louise15 View Post
    Hi Ali,
    can you tell me how long it took for infliximab to work, my daughter has had two infusiona and her pain seems to have incressed. all her glands are swollen and I am worried that the drug could be making the condition worse.
    Thank you
    Louise
    Hi Louise,

    I had swollen glands after the first infusion and was given Benadryl before other infusions and it never occurred again. It is quite common for swollen glands to occur after Remicade infusion and usually to prevent that the patients are given Benadryl mostly and sometimes steroids.

    I was pain free almost 3 days after the first infusion and as both my CRP and ESR returned to normal levels. What happened to me after 4th infusion is still baffling my doctors.

    I know many people with Ankylosing Spondylitis that it will take 3-4 infusions to get positive results from Remicade and some never do.

    She still need to finish the loading dosage 0,2,6 weeks if no blood abnormalities or adverse reactions occurs. Hopefully, she will see some benefits after the third infusion.


    HTH,
    Ali

    Last edited by AliRah; 12-18-2007 at 06:03 AM. Reason: spelling

     
    Old 12-20-2007, 11:59 AM   #29
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    Re: Possible CRMO diagnosis

    Quote:
    Originally Posted by AliRah View Post
    Hi Louise,

    I had swollen glands after the first infusion and was given Benadryl before other infusions and it never occurred again. It is quite common for swollen glands to occur after Remicade infusion and usually to prevent that the patients are given Benadryl mostly and sometimes steroids.

    I was pain free almost 3 days after the first infusion and as both my CRP and ESR returned to normal levels. What happened to me after 4th infusion is still baffling my doctors.

    I know many people with Ankylosing Spondylitis that it will take 3-4 infusions to get positive results from Remicade and some never do.

    She still need to finish the loading dosage 0,2,6 weeks if no blood abnormalities or adverse reactions occurs. Hopefully, she will see some benefits after the third infusion.


    HTH,
    Ali
    Thanks Ali,
    I am just hoping that it works as the pain seems to increse after she has had the infusion. Her Doctor said she has to give it a least 3 month. She has the 3 one 12 Jan so I hope it works. Thank again
    Louise

     
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