Guest guest Posted December 21, 2004 Report Share Posted December 21, 2004 Hi Folks, My son is one of the thirteen children included in the thalidomide study. He has been on thalidomide now for almost two years. He is also on mtx, remicade and arava. It was the thalidomide that enabled him to finally get off of steroids. It's been a great achievement. The thalidomide does make him sleepy, and very rarely he says his fingers feel tingly, but the benefits so far have greatly outweighed the down side. I also have to do a phone survey about his sexual activity, which in the beginning was horribly embarrassing, but I've gotten over it:) It would be great to hear from other parents whose kids who are on thalidomide, or anyone who has questions. Take care. (and Ezra, 8 year old systemic) On 12/21/04 6:46 AM, " goldscout@... " <goldscout@...> wrote: > > Since I have the most experience with thalidomide, I thought I'd take the > liberty of chiming in on some of the concerns expressed. > > 1) Doctors do have to register to prescribe it, but it is an easy process. > There are lots of phone calls to prevent any risk the child might be pregnant. > A good thing since it does cause deformities. However, the drug is out of > the body within four weeks. For those who don't remember methotrexate also > causes deformities if you become pregnant and is not out of the body nearly so > quickly. > > 2) As the recent news so vividly indicates no drug is perfectly safe. It's > not even perfectly safe to drive to your doctor's appointment or the > supermarket. Everything is a risk benefit balance. > > 3) The neurotoxicity is typically a nonevent. About one third of children > get some tingling. Only a couple have had to come off the drug. No one can > ever promise nothing could happen, but it is important to remember the > successful > patients have come off most or all of their other drugs including prednisone. > When balanced against the long term prednisone side effects and the risks of > the other medications this is a very acceptable risk. > > 4) As for other studies and centers, the paper just published in the journal > of pediatrics is from Wisconsin, Boston, Rio de Janeiro, and New York. There > is a large study coming from Paris. I am incontact with doctors around the > world who are thrilled with the results of thalidomide for their severe > JRA/JIA > patients > > 5) Does it work for everyone? Of course not. Nothing does. It works > quickly and dramatically when it works. About 1/3 of the time it doesn't seem > to. > We don't know why yet. > > I hope this helps. > > J. A. Lehman MD, Chief > Division of Pediatric Rheumatology, > Hospital for Special Surgery, and > Professor of Pediatrics > Sanford Weill Cornell Medical Center > > giving the best care with great care > > HSS > 535 E 70 St > New York, NY 10021 > > goldscout@... > > 212-606-1151 > 212-606-1938 > > It's not just growing pains > A guide to bone, joint, muscle, and > arthritis pains in childhood > J. A. Lehman MD > Oxford University press 2004 > www.goldscout.com > > > Quote Link to comment Share on other sites More sharing options...
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