STEROIDS?

cfmom2rt

New member
Has anyone used Orafed? Our doc put Reece on this Today,( oral) Just curious as to what some of ya'll think it works.? She said she would just keep him on it until he keeps bck to his baseline .He has been on 2 antibiotics & just got out of the hosptial last month. He just cant seem to get well. Like 2 wks after he got out he came down w/ a " cold". It just wont go away. He has been back & forth to the clinic 2x since last month, they say hes on the border of coming back in. You know we dont want that!!!!!!! His antibotics are Spetra & Rifatrim (sp)? Thanks for the info in advance!!!Also what are the side effects you have experinced??
Leah ~ mommy 2 Reece 3yrs. w/ CF
 

anonymous

New member
Orapred is an oral (systemic) steroid that reduces the inflammation in the lungs. Used short term, it can be a wonder drug, used long term it can have some very serious side effects. My children have all used it multiple times for various reasons (not lung related - it has anti-inflammatory properties and can stop or decrease an allergic reaction). I wouldn't have an issue with your ds being on it. If, however, they want to use it for longer than just a few weeks, I'd sit down with your dr and have a serious discussion about side effects, cost/benefit, and safer alternatives. Also, if used longer than 10 days, your body does become dependant on it and your ds will need to be slowly withdrawn from the drug. (Example, when my ds takes 2 tsps/day, we decrease to 1-1/2/day for a couple days, then 1/day for a couple days, 1/2 day and finally 1/2 every other day for a few days before discontinuing.)

Is your ds on any inhaled steroids like pulmicort, flovent, azmacort, QVar, etc?? If not, I'd discuss adding one of these and doing a short "burst" of orapred for 10 days or shorter first. If he is already on one of these, I'd discuss doubling the inhaled steroid and trying a short burst or even a month long taper before I'd consider staying on orapred indefinitely. Side effects include: water retention, "moon" face, moodiness, hyperactivity, depression of the body's normal production of cortisol, cataracts, glaucoma, and osteoperosis to name a few. It makes the body less able to heal and depresses can depress the immune system. It's pretty serious stuff but side effects are usually minimal when used short-term. My little kids get hyper/restless and more emotional, older ds says he can't concentrate while using it. It does usually work really well.

Hope that helps!
 

cfmom2rt

New member
Yeah!!! Thanks alot! He IS only on it for 10 days ~ 1tsp for 3 days & 1 tsp for 7 days 2x day then he goes back to the dr. He does take flovent 2 puffs 2x day.
 

anonymous

New member
Hi Leah - When my son was your son's age, we had similar problems. We stopped the flovent and switched to pulmicort. The pulmicort was much more effective for our son. Now that he is seven, he is using advair with similar success. My son has needed orapred or similar oral steroids for short periods and it is amazing. We see very fast results. Hope all goes well. Jo Annn
 
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