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prednisone/zithromax
- Thread starter anonymous
- Start date
I have been on alternate day prednisone for several years now. I am l8 years old and my lung function has always been 98-100%. I have never been ill from cf. My throat cultures have always been negative until last year-pseudomonas showed up (the findings were rare ,meaning barely there, both mucoid and nonmucoid), I was then prescribed inhaled Tobi and Cipro for one month and about two weeks into the treatment I was have problems with tolerating both medications and the side effects were becoming worse so I had to stop the Cipro but continued with the Tobi. After a month of being off Tobi my culture showed only nonmucoid but still rare. It was recommmended that I continue with the Tobi for 3 months and I tried but side effects such as shortness of breath and non stop coughing (which I have never experienced) caused me to discontinue, then I was switched to inhaled Colistin and oral Levaquin for 3 months I finished the course with no side effects however I was still cultured the pseudomonas- I was then placed on inhaled Tobi and had problems again- so this was a whole year of trying this and that and since I would be moving away to attend a college several hours from my home my doctor decided a bronchoscopy and a two week course of ivs would be best. The results from the bronch showed no bacteria growth. And at the time of being hospitalized I was prescribed zithromax along with the continuing of the prednisone, the dosage has always been 30 mg. It is also recommended to take inhaled Colistin every three months. I have not had a culture since the iv treatment because I need to finish up a month of the inhaled antibiotic first. I would really value advice! I am thinking since the bronch showed no bacteria growth - is it wise to consume antibiotics as a routine? I know inflammation showed but I believe most of it may have been caused from the side effects of the Tobi (shortness of breath and non stop coughing). My doctor mentioned that inhaled steriods (Pulmocort) may not be as effective as the oral prednisone. I know the decisions I make now are extremely important for the maintaince of my health now and for the long term future. So like I said any information that anyone would share is appreciated!
lovingBenandCambree
New member
If I were you I too would get off the steroids. I have only been on them once and that was because I was very sick and my lung functions were horrible. they were trying anything to get them up. You are very healthy and very young. I would talk to your dr. about getting you off. You have to do it gradually and decrease the mg you take each day so don't just stop. Steroids can deplete your bone density. I was only on them for about a month and the most I took was 40 mg a day down to 5 mg a day. I was only on the 40 mg a day for about a week. anyway they were worried about my bone density and had a scan right away to make sure the steroids didn't cause any damage. I also take zithromax everyday. I would seriously talk to your dr about getting off the prednisone asap. Good luck
Emilee
Emilee
lovingBenandCambree
New member
I also take Advair everday twice a day and I think it helps me.
Emilee
Emilee
I got diabetes and severe osteoporosis from steroids. Unless you want to be giving yourself wonderful little injections (in the stomach) before every meal, like everyone else with steroid experience, and be told you might accidentally get fractures in your spine from *sitting in a chair*, I would strongly advise you to STOP THEM AS SOON AS HUMANLY POSSIBLE.
Frankly, I question the competence of your doctor in prescribing something so dangerous (the big guns of anti-CF therapy) when you're at close to perfect lung function.
Frankly, I question the competence of your doctor in prescribing something so dangerous (the big guns of anti-CF therapy) when you're at close to perfect lung function.
Emilee- I appreciate your response! I would really like to stop taking the prednisone. I realize it is a good idea to continue with an antiinflammatory. I mentioned taking an inhaled steriod to my doctor and he really didn't think using inhaled vs. oral would be as good. He said that because my dosage of prednisone was alternate days so it should greatly decrease the side effects. Now that I have started taking the zithromax I am wondering if I really need to take both. Do you take oral or inhaled antibiotics on a regular basis? It is an inspiration to me to hear that you 25 and have a family! <img src="i/expressions/face-icon-small-smile.gif" border="0">
lovingBenandCambree
New member
I am glad that my response was useful. I take both oral and inhaled antibiotics. I take the zithromax, and the advair and I also do albuterol 4 times a day due to the fact that I just feel better when I do and I do pulmozyme once a day. I was on Tobi for years and just recently in the past year had a bad reaction so I have been off of it for quite some time now. I also take Calcium and a mult vitamin. I take enzymes with every meal and I think that is about it. If you have any other questions please let me know. You can email me if you like. My email is tigger_babe32@hotmail.com
Emilee
Emilee
I agree that the steroids are terrible for you. I HAVE to take them for other reasons (adrenal failure) and though they have benefited my lungs a great, great deal. My PFTS are near perfect and all the inflammation in my lungs is completly gone.
However, steroids mask infection, so I never know when I am sick, til I am really, really sick, I can walk around with a fever and not even know it The steroids give me energy and make me feel good. however, In the past two years I have been on them, I have gotten Glaucoma, cataracts, high blood pressure, angina related to vasospasms. osteoporsis and diabetes. My eyes are getting so bad.
This scares me to no end because it has only been two years and I have to be on them for the rest of my life. From all that I have learned, oral steroids should only be used short term to give you a boost to get better... Once in a while. They really do have a wonderful benefit to the lungs, not to mention help you gain weight.. in my case I have gained to much weight.. but that is the only benefits..
Jennifer 32
w CF and addison's diseae
However, steroids mask infection, so I never know when I am sick, til I am really, really sick, I can walk around with a fever and not even know it The steroids give me energy and make me feel good. however, In the past two years I have been on them, I have gotten Glaucoma, cataracts, high blood pressure, angina related to vasospasms. osteoporsis and diabetes. My eyes are getting so bad.
This scares me to no end because it has only been two years and I have to be on them for the rest of my life. From all that I have learned, oral steroids should only be used short term to give you a boost to get better... Once in a while. They really do have a wonderful benefit to the lungs, not to mention help you gain weight.. in my case I have gained to much weight.. but that is the only benefits..
Jennifer 32
w CF and addison's diseae
I take 30 mgs of hyrdrocorteff every day, when I am sick, I take double, triple or even quadruple that amount.. several times a day.
My body is life dependant on it..because I don't have any adreanl gland function at all..It has nothing to do with CF..
Jennifer
32 w/CF Addison's disease
My body is life dependant on it..because I don't have any adreanl gland function at all..It has nothing to do with CF..
Jennifer
32 w/CF Addison's disease