Discussions that mention pamidronate

Bone Disorders board


[QUOTE=momwithhope;3246167]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
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
[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

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
[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. 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?
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
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
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