Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 , You bring ups some really excellent points. I'm going to put an email together for Dr. Lehman detailing everything she is taking and send it to him today so he'll be up to speed completely. We see him in November but he always makes himself very excess able via email. Lori Re: [ ] Crazy? Lori, You aren't crazy. You are in a very difficult situation. Whatever you decide to do for , I would be sure to discuss it with Dr. Lehman. He should be aware of all medications and supplements (Reliv, Florastore, and any others) is taking and at what dosage. A second opinion from another pediatric rheumatologist might be a good idea, too. Something to bear in mind: RA that develops in middle age versus RA that develops at age 12 are not exactly the same. Treatment approaches may differ considerably. Although Dr. Lehman may seem unsympathetic about 's hair loss, he may be thinking that, because of the nature of her disease, she is at high risk for permanent joint and/or organ damage without the MTX. He may be thinking that she would remain on MTX until her disease appears to be well-controlled and then scale it back. I would ask him about it. Is he aware of how upset is about her hair falling out? One of the reasons researchers believe that Humira works better with MTX is that it is thought that MTX suppresses the formation of antibodies directed against the Humira. Without the MTX, 's body may make anti-Humira antibodies, and the drug may become less effective for her. I would ask Dr. Lehman about this also. Not an MD I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org RE: [ ] Crazy? > Thank you all again. > > For the record, is on 25 mg of MTX per week by injection. Since I > fill the syringe, this week I'm only going to give her half of her normal > amount. > > Some have asked why so aggressive. She does have a severe case of RA (if > there is such a thing as severity of RA). When she was finally diagnosed > in > February of this year she couldn't even walk. It came on her rapidly and > ravaged every part of her body. It's been a tough year. My dad was > diagnosed with RA when he was about 22 years old and spent an entire year > in > the hospital. Bad disease. I hate it. Don't we all! > > Some have asked what else she takes. Since February she has been on > Prednisone and Lodine every day. She started Prednisone at 40 mg per day > and now is down to 5 mg per day. She and I have set a personal goal of > getting her off Prednisone by the end of November and so far, so good. On > April 4th she began weekly injections of Humira and about a month after > starting that, she began MTX injections as well. Of course she also takes > Folic Acid since starting MTX. > > She's done pretty well on these drugs until now. Her hair has been > steadily > thinning over the last few months, but since she had very thick hair it > wasn't really a problem. This weekend however it began falling out in > huge > clumps. She has a bald spot right on the top of her head in the front > about > the size of her fist. Every day it gets bigger. > > Tomorrow is when she is due for MTX again and like I said I am only going > to > give her 12.5 mg instead of the full 25 mg. Next week I think I will give > her less than that. But ultimately I think she needs a little break from > the MTX. > > Yesterday I started her on Minocin and I think I would like to see if she > can tolerate it and let her body have a rest from MTX for a few months. > I'm > having her take a probiotic called Florastore every day to help counteract > the disruption that can take place in the intestines from antibiotics. > > Our rheumy has discussed using Rituxan and Cytoxan (I'm sure I've > misspelled > these) in conjunction with one another via two days of IV infusion in a > row. > I think after the holidays I would be willing to consider this more > seriously if we could give her a 3 month break from MTX first and then > assess her progress on just the Minocin, Lodine and Humira. > > Anyway, that's what I'm thinking and this is my tentative plan. Thank you > all for listening and for the advice and support you've offered. We > (, > my husband and I) truly appreciate the collective experience and wisdom of > the people on this loop. > > Lori in NJ Quote Link to comment Share on other sites More sharing options...
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