Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 Macey has had success with a combination of nasal steroids, nasal irrigation, inhaled antibiotics, oral antibiotics and then finally resulting to IV antibiotics. She is daily on a nasal steroid but we've been lax about the nasal irrigation. We've never done steroids for sinus problems just for lung issues. Macey was steroid dependant for her breathing her first 3 years of life so I'm always hesitant to even do a burst. Ursula Holleman mom to (11 yrs old) and Macey (8 yr. old with CVID, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 In a message dated 4/7/04 4:01:53 PM Pacific Daylight Time, scoleman@... writes: I have been rading about 'steroid bursts'. Do those help? Hi , My son has been suffering from chronic sinus infections for at least six years now. His sinuses swell shut, thus keeping the meds from reaching the infection. The ONLY thing that works for him is a short burst of Prednisone along with a good antibiotic. For him, they are equally important. Along with being an excellent antihistamine, Prednisone is an excellent anti-inflammatory. We only use the Prednisone for five days (a " burst " )--it was at 10 mg. a day for many years, but because he's older now, he needs 20 mg. a day. Sandi--Mom to , age 11. Immune Deficiency, Tetrology of Fallot, Pulmonary Valve transplant, Mitral Valve stenosis, chronic sinusitis, chronic ear infections, asthma, severe allergies, GERD, Tethered Cord Syndrome. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 I have a steroid question, though it isn't about my JRA child, but my husband. I figure you guys are the experts though. My husband will be taking 100 mg of prednisone a day for 5 days repeated every 3 weeks for 6 months. Does anyone know if you still get the side effects from high dose steroids if you have a break for 2 weeks after the 5 days instead of taking them continuously? Thanks. Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 Hi Kim I am trying to remember how quickly some of the physical changes occurred when we raised Robbie's dose to over 60 mg last year - the weight gain was pretty quick - though I don't think it occurred that quickly. Your husband may see a little weight gain with that dose, though Robbie's weight drops rapidly when we lower. Taking the dose for less than a week should minimalize or eliminate most of the side affects - there may be some mood changes, but I think most Docs have found that these burst type doses prevent most side afffects - such as the bone density issues. My ex was on a high dose of steriods, which tapered daily for about a week - he did see some weight gain - it may have affected his mood, he did have some anxiety issues - but it is hard for me to say how much was from the actual meds - I was deployed during Desert Storm at the time - so he was pretty anxious as it was...and in the long haul - after I came back 9 months later he'd had a big weight loss. I hope you husband does well, without complications! If I knew then what I know now, I would have pushed more to try to avoid the daily doses of pred for my son. Val Rob's Mom (8,systemic) steroid question I have a steroid question, though it isn't about my JRA child, but my husband. I figure you guys are the experts though. My husband will be taking 100 mg of prednisone a day for 5 days repeated every 3 weeks for 6 months. Does anyone know if you still get the side effects from high dose steroids if you have a break for 2 weeks after the 5 days instead of taking them continuously? Thanks. Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2007 Report Share Posted April 11, 2007 Hi! I'm not the expert of steroids, but I've been on them and so has . It depends on the optimal dosage the doc thinks will help him at the actual infusion. It should come down to the level he's at, and what dose will work. So ask the doc what mg. he/she wants him to be in his blood stream the day of the infusion. Then you'll know what you should be doing and make sure they aren't giving him too much at one time. How does he do emotionally on the steroids? Any behavioral/emotional stuff on them? loses him mind. I use them as a last ditch effort because he climbs the walls. hang in there! Janet > > Brennans pulmo just called me back and we need to take him back up to > 8 ml daily x four days and then we will try to taper him by 1 ml every > 4 days. We are really having trouble tapering him. This will be the > third burst and taper in three weeks. > My question is that, due to the nasty IVIG reaction he had last month, > ID dr said that he will run an IV steroid prior to the next infusion. > Im wondering, if he is still on orals when infusion day comes round, > will we still be able to run the IV steroid prior? or would the orals > be sufficient?anyone know? > > valarie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2007 Report Share Posted April 11, 2007 Hi! I'm not the expert of steroids, but I've been on them and so has . It depends on the optimal dosage the doc thinks will help him at the actual infusion. It should come down to the level he's at, and what dose will work. So ask the doc what mg. he/she wants him to be in his blood stream the day of the infusion. Then you'll know what you should be doing and make sure they aren't giving him too much at one time. How does he do emotionally on the steroids? Any behavioral/emotional stuff on them? loses him mind. I use them as a last ditch effort because he climbs the walls. hang in there! Janet > > Brennans pulmo just called me back and we need to take him back up to > 8 ml daily x four days and then we will try to taper him by 1 ml every > 4 days. We are really having trouble tapering him. This will be the > third burst and taper in three weeks. > My question is that, due to the nasty IVIG reaction he had last month, > ID dr said that he will run an IV steroid prior to the next infusion. > Im wondering, if he is still on orals when infusion day comes round, > will we still be able to run the IV steroid prior? or would the orals > be sufficient?anyone know? > > valarie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2007 Report Share Posted April 11, 2007 --- well, he's a bit emotional, easy to get his feelings hurt, and REALLY hungry!! He used to be worse on them. My other son has a bit more trouble, and savannah cant have them bc she hallucinates!! yikes!! This was a last ditch effort, but now we cant get him off ggrr. thanks--I'll ask. I feel like we are getting " too many cooks in the kitchen " in a way--so many drs to call and ask these questions of. valarie In , " jdbcj2000 " <janet_richards@...> wrote: > > Hi! I'm not the expert of steroids, but I've been on them and so has > . It depends on the optimal dosage the doc thinks will help him > at the actual infusion. It should come down to the level he's at, and > what dose will work. So ask the doc what mg. he/she wants him to be > in his blood stream the day of the infusion. Then you'll know what > you should be doing and make sure they aren't giving him too much at > one time. > How does he do emotionally on the steroids? Any behavioral/emotional > stuff on them? loses him mind. I use them as a last ditch > effort because he climbs the walls. hang in there! Janet > > > > > > Brennans pulmo just called me back and we need to take him back up to > > 8 ml daily x four days and then we will try to taper him by 1 ml > every > > 4 days. We are really having trouble tapering him. This will be the > > third burst and taper in three weeks. > > My question is that, due to the nasty IVIG reaction he had last > month, > > ID dr said that he will run an IV steroid prior to the next infusion. > > Im wondering, if he is still on orals when infusion day comes round, > > will we still be able to run the IV steroid prior? or would the orals > > be sufficient?anyone know? > > > > valarie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2007 Report Share Posted April 11, 2007 --- well, he's a bit emotional, easy to get his feelings hurt, and REALLY hungry!! He used to be worse on them. My other son has a bit more trouble, and savannah cant have them bc she hallucinates!! yikes!! This was a last ditch effort, but now we cant get him off ggrr. thanks--I'll ask. I feel like we are getting " too many cooks in the kitchen " in a way--so many drs to call and ask these questions of. valarie In , " jdbcj2000 " <janet_richards@...> wrote: > > Hi! I'm not the expert of steroids, but I've been on them and so has > . It depends on the optimal dosage the doc thinks will help him > at the actual infusion. It should come down to the level he's at, and > what dose will work. So ask the doc what mg. he/she wants him to be > in his blood stream the day of the infusion. Then you'll know what > you should be doing and make sure they aren't giving him too much at > one time. > How does he do emotionally on the steroids? Any behavioral/emotional > stuff on them? loses him mind. I use them as a last ditch > effort because he climbs the walls. hang in there! Janet > > > > > > Brennans pulmo just called me back and we need to take him back up to > > 8 ml daily x four days and then we will try to taper him by 1 ml > every > > 4 days. We are really having trouble tapering him. This will be the > > third burst and taper in three weeks. > > My question is that, due to the nasty IVIG reaction he had last > month, > > ID dr said that he will run an IV steroid prior to the next infusion. > > Im wondering, if he is still on orals when infusion day comes round, > > will we still be able to run the IV steroid prior? or would the orals > > be sufficient?anyone know? > > > > valarie > > > Quote Link to comment Share on other sites More sharing options...
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