For about 7 months I keep getting asthma like symptoms. increased wheezing, coughing, shortness of breath. Of course all of these are associated with CF too but the difference is my PFT's have been pretty much stable. Not wonderful but stable. I was in the hospital in May for 5 days and did home i'vs for 3 weeks after that. And the only think that has helped was being on high doses of steroids (40 mg) a day. I tapered down to 10 mg of prednizone a day and now I'm having the increased symptoms again. I went and seen my Dr on Wednesday and he didn't have a good answer of what could be happening. One suggestion was allergies to something. Well, you can't do an allergy test while on steroids. so that's on hold. I need the steroids or I'll be really struggling. The second suggestion was since I have GERD, the acid could be coming back up causing my airways to have issues. He didn't think it was asthma because I've been on singular and pulmicort along with all my other cf meds since may but the symptoms kick up when i'm down to 10 mg of prednizone daily. So I will be doing a barium swallow test to see if GERD is causing problems. If so I will need surgery to fix that. But till then I keep having the increased shortness of breath, wheezing and hacking a lot. The kind of scary thing is the Dr really has no clue what's causing it. I'm waiting for blood work to come back and see what's in my culture this time and hopefully get some answers.<div><br></div><div>Any input would greatly be appreciated.</div><div><div><br></div><div><br></div></div>
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Dr can't figure out what's wrong. I'm an enigma
- Thread starter yrmathews
- Start date
For about 7 months I keep getting asthma like symptoms. increased wheezing, coughing, shortness of breath. Of course all of these are associated with CF too but the difference is my PFT's have been pretty much stable. Not wonderful but stable. I was in the hospital in May for 5 days and did home i'vs for 3 weeks after that. And the only think that has helped was being on high doses of steroids (40 mg) a day. I tapered down to 10 mg of prednizone a day and now I'm having the increased symptoms again. I went and seen my Dr on Wednesday and he didn't have a good answer of what could be happening. One suggestion was allergies to something. Well, you can't do an allergy test while on steroids. so that's on hold. I need the steroids or I'll be really struggling. The second suggestion was since I have GERD, the acid could be coming back up causing my airways to have issues. He didn't think it was asthma because I've been on singular and pulmicort along with all my other cf meds since may but the symptoms kick up when i'm down to 10 mg of prednizone daily. So I will be doing a barium swallow test to see if GERD is causing problems. If so I will need surgery to fix that. But till then I keep having the increased shortness of breath, wheezing and hacking a lot. The kind of scary thing is the Dr really has no clue what's causing it. I'm waiting for blood work to come back and see what's in my culture this time and hopefully get some answers.<br>Any input would greatly be appreciated.<br><br>
For about 7 months I keep getting asthma like symptoms. increased wheezing, coughing, shortness of breath. Of course all of these are associated with CF too but the difference is my PFT's have been pretty much stable. Not wonderful but stable. I was in the hospital in May for 5 days and did home i'vs for 3 weeks after that. And the only think that has helped was being on high doses of steroids (40 mg) a day. I tapered down to 10 mg of prednizone a day and now I'm having the increased symptoms again. I went and seen my Dr on Wednesday and he didn't have a good answer of what could be happening. One suggestion was allergies to something. Well, you can't do an allergy test while on steroids. so that's on hold. I need the steroids or I'll be really struggling. The second suggestion was since I have GERD, the acid could be coming back up causing my airways to have issues. He didn't think it was asthma because I've been on singular and pulmicort along with all my other cf meds since may but the symptoms kick up when i'm down to 10 mg of prednizone daily. So I will be doing a barium swallow test to see if GERD is causing problems. If so I will need surgery to fix that. But till then I keep having the increased shortness of breath, wheezing and hacking a lot. The kind of scary thing is the Dr really has no clue what's causing it. I'm waiting for blood work to come back and see what's in my culture this time and hopefully get some answers.<br>Any input would greatly be appreciated.<br><br>
amessofphotos
New member
it sounds like abpa.... have your doc check your ige level (blood test) asap
amessofphotos
New member
it sounds like abpa.... have your doc check your ige level (blood test) asap
amessofphotos
New member
it sounds like abpa.... have your doc check your ige level (blood test) asap
I mentioned that to the the one dr in early june and they couldn't say yes or no to that. I just got the blood work results online. It shows the ige level high again. It was high in june too. The aspergillus level was high too in blood work along with a few other levels. My wife and I do think that's what it is now that the levels are high again even though the steroids should bring down the ige levels. I'm waiting for the dr to give me a call this week. Still waiting on sputum culture results too.
I mentioned that to the the one dr in early june and they couldn't say yes or no to that. I just got the blood work results online. It shows the ige level high again. It was high in june too. The aspergillus level was high too in blood work along with a few other levels. My wife and I do think that's what it is now that the levels are high again even though the steroids should bring down the ige levels. I'm waiting for the dr to give me a call this week. Still waiting on sputum culture results too.
I mentioned that to the the one dr in early june and they couldn't say yes or no to that. I just got the blood work results online. It shows the ige level high again. It was high in june too. The aspergillus level was high too in blood work along with a few other levels. My wife and I do think that's what it is now that the levels are high again even though the steroids should bring down the ige levels. I'm waiting for the dr to give me a call this week. Still waiting on sputum culture results too.
amessofphotos
New member
yeah it sounds like bad abpa to me! I have it also and it's a pain in the butt i was on intraconazole for about 4 months but had to stop due to rhabdomyalsis... If you culture aspergillus and have ige i'm pretty sure that is enough for a diagnosis but what do i know!
have you tried NAC at all for the tightness? I bought some but i'm bad about consistency with ANOTHER med but i wonder if it would help the abpa symptoms enough to make it worth it...
goodluck!
have you tried NAC at all for the tightness? I bought some but i'm bad about consistency with ANOTHER med but i wonder if it would help the abpa symptoms enough to make it worth it...
goodluck!
amessofphotos
New member
yeah it sounds like bad abpa to me! I have it also and it's a pain in the butt i was on intraconazole for about 4 months but had to stop due to rhabdomyalsis... If you culture aspergillus and have ige i'm pretty sure that is enough for a diagnosis but what do i know!
have you tried NAC at all for the tightness? I bought some but i'm bad about consistency with ANOTHER med but i wonder if it would help the abpa symptoms enough to make it worth it...
goodluck!
have you tried NAC at all for the tightness? I bought some but i'm bad about consistency with ANOTHER med but i wonder if it would help the abpa symptoms enough to make it worth it...
goodluck!
amessofphotos
New member
yeah it sounds like bad abpa to me! I have it also and it's a pain in the butt i was on intraconazole for about 4 months but had to stop due to rhabdomyalsis... If you culture aspergillus and have ige i'm pretty sure that is enough for a diagnosis but what do i know!
<br />have you tried NAC at all for the tightness? I bought some but i'm bad about consistency with ANOTHER med but i wonder if it would help the abpa symptoms enough to make it worth it...
<br />
<br />goodluck!
<br />have you tried NAC at all for the tightness? I bought some but i'm bad about consistency with ANOTHER med but i wonder if it would help the abpa symptoms enough to make it worth it...
<br />
<br />goodluck!
I have not tried NAC yet. I'll have to look that up. Thanks for your input. It's great talking to others with cf and extra stuff to go with it. Even though we're not the experts I think we know things better than the dr's sometimes because it's our body and we worry a lot more than they do. In june there was not aspergillus in the culture. I'm still waiting for the culture results to come back this time. So we'll see what comes of that.
I have not tried NAC yet. I'll have to look that up. Thanks for your input. It's great talking to others with cf and extra stuff to go with it. Even though we're not the experts I think we know things better than the dr's sometimes because it's our body and we worry a lot more than they do. In june there was not aspergillus in the culture. I'm still waiting for the culture results to come back this time. So we'll see what comes of that.
I have not tried NAC yet. I'll have to look that up. Thanks for your input. It's great talking to others with cf and extra stuff to go with it. Even though we're not the experts I think we know things better than the dr's sometimes because it's our body and we worry a lot more than they do. In june there was not aspergillus in the culture. I'm still waiting for the culture results to come back this time. So we'll see what comes of that.