Discussions that mention infliximab

Bone Disorders board


[QUOTE=AliRah;3256313]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
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
[QUOTE=AliRah;3273270]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
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
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 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
[QUOTE=jram01rebecca;3297715]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
[QUOTE=AliRah;3273270]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
[QUOTE=louise15;3354389]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