Guest guest Posted May 30, 2003 Report Share Posted May 30, 2003 Patty... I couldn't take Bactrim either...I went to the Clinic every 2 weeks or so for a procedure which included an inhaler and some kind of exhale/inhale device.....it was so long ago that I don't remember exactly how/why it was done.....it seems to me tho that the drug used in the inhaler was dapsone.....does that sound right? Cheryl/Randy do you know? \ love jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2003 Report Share Posted May 30, 2003 Patty, that is very interesting. I had been on dapsone for 23 years or so. I started out at 25 mg and eventually discovered that I could take 100 mg and not break out with the lesions that accompany DH. Even then, the doctor's did not impart to me that I probably had Celiac too....so as long as the medication would take care of the lesions, I was content. However, I kept getting more and more anemic. I would cut back and try to be more aware of the gluten in the food...for me, that just meant bread. I had NO clue what a true GF diet entailed until I was finally dx with Celiac in October of 00. Anyway, once I went totally GF and was able to find the hidden sources of the gluten, I was able to get off the med. As I said earlier, I did have to take it slowly because to withdraw a medication after so many years, well....my body just had to adapt and also had to get rid of all the glutens leftover in my body (at least that is how I viewed it). My dermatologist was thrilled when I went off! Me too! I had no idea that we were susceptible to pneumonia....however, I suppose that if your lungs, (or any organ for that matter) are weakened in some sort of way, that the immune system would attack that part. So, how wonderful that dapsone helps you out. Indeed, it is an antibiotic. My original doctor told me that I probably would not get as sick as often because I was on it....but for me, having little children as I did then, the dapsone didn't stop the illnesses! Kids just LOVE to share! Debby [ ] Vit-E Hi all, In a conversation with my hep (Guy Neff) he brought up his concern about howmany of the post-transplant patients come in with problems because they aretaking supplements. I was telling him about this site and the conversationswe have from time to time. He made the point that post-transplant, all hispatients are immunosuppressed, then commented on his AIH and PCB patients.He mentioned that of late a lot of people seem to think Vitamin E was goodand he was in the process of sending out information packets to all hispatients to warn them about herbs and other supplements with particularinterest in Vitamin E. This was in the course of another conversation, butI'll follow up with him, and pass on any info I get. If you are taking VitE, careful.Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2003 Report Share Posted May 31, 2003 Dear Jerry, Randy takes bactrim 3x/week so we cannot help you with the inhaled med. When he first came home he was on that great swish and puke (nystatin), bactrim, and some other antiobiotic for 60 days. But as you know, the farther you get out from the tx, the less and less pills you take. Love, Cheryl & Randy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2003 Report Share Posted November 22, 2003 > > That's not uncommon because a lot of things look somewhat like RA > but turn out to be something different. The important thing is > whether or not you are being treated as if it is RA because that is > often what UCTD turns out to be. Joint damage can occur fairly > rapidly with RA so it is often best to treat anything that looks > somewhat like RA as if it were RA until proven otherwise. Good luck > and God bless. > > Hello Harold, > The doctor had x-rays of my hands taken today; so far, they look fine. > He did prescribe " dapsone " --have you heard of it? I think I'll wait a > little while before starting it. After the side effects from the > other meds, I'm nervous. > > I had a difficult time communicating with this doctor today; he's > knowledgable and I trust his judgement, but he's hard to talk to. He > interrupts, goes off on tangents, and doesn't listen too well. I'm > considering switching before I start the new med. Also, though I just > saw him one month ago, he had no memory of me. No memory of > prescribing plaquenil or of my phone call reporting problems with it. > He hadn't even looked at the chart long enough to fake it, like the > other doctors do! > > Sierra > > > > > ----- Original Message ----- > > From: snowdrift52003 > > Rheumatoid Arthritis > > Sent: Friday, November 21, 2003 8:47 AM > > Subject: Still Perplexed! > > > > > > Hi all, > > I'm back from my appointment. The official word > is: " undifferentiated > > connective tissue disease. " > > > > Sierra > > > > > > Quote Link to comment Share on other sites More sharing options...
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