Ive got ABPA, steroids are the best drugs ever?

[Paulabpa]

Hi everyone im a new member,found out ive got ABPA (from a dr in casualty,abit nervous why the consultant didnt write to me, but put it on my medical records) see her tomorrow🤔🤔 its taken 13 mths from becoming ill to find out, many different types of inhalers that did not work,but the powder type made me very ill quick.

Ive decided to google, not to sure thats a good idea,could be reading things that might be wrong?

My treatment looks like steroids and antifungal drugs,not to sure how long months or years? Google🤔🤔

My drs made getting steroids like gold dust,due to side effects,that no-ones told me about yet,so i became very ill over 13 mths,the felling of not being able to breath,was not pleasant to say the least. Happy days

But i have to say them steroids, are the best things ive ever had 30 mins from taking them and you could run 10 miles unreal,yet you couldnt even walk 10 feet before hand ehh.

[veg58]

Hi, I have ABPA and have been on antifungal drugs (itraconazole) for two years now. It has made a big difference and without the risk of steroids. If I had been on steroids for that length of time I would have risked weight gain, diabetes , thin bones etc. In the short term steroids are ok but if you can avoid long term use, I think that is the way to go.

[Wheezyanna27 in reply to veg58]

FIT(fungal infection trust) so helpful with any fungal diseases.. I too have Abpa

[shadow4me]

What I say if they work for you good ,Better than not breathing x

[Paulabpa]

Just got back from the consultant,steroids and thats it? i asked about the antifungal drugs i see people talking about and she says keep off google😂😂😂

So bone checks next,and go back in a few months,lets hope that does the trick.

[Lindy-loo1949]

I was diagnosed with MS several years back. They had me on I V prednisone intermitantly. Dr never told me I would loose 20% bone mass and leave myself open to diabetes due to steroid use! I had some difficulty breathing a month or so ago and was perscribed more steroids... NEVER will I take them again! Plus, while you take them you feel like garbage!

[Paulabpa]

Sorry to here that,been taking them every 5/6 weeks for 13 months, i can run on a tread mill for 20 mins,Go on 10 mile walks in the lake district. Yet after 5 weeks cant even go to the loo 10 ft away,cant sleep, talk,walk,its like putting a bag over your head with a few pin holes in baah.

As for side effects even today didnt say anything about it? Apart from sending me to check my bone thickness at some point?

The only thing for me is why are they giving them out,it must be the only option available to them?

[Lazarus]

Paulabpa, yes it may be the best or the only option for you, but whatever any Doctor gives you, it should be done on the principle of "informed consent", that is, where they explain to you why they are giving you something, the possible or probable side effects or risks, and the expected benefits. Often it is simple and obvious. Sometimes less clear cut as to what is best for the patient. But Steroids often do make you feel great, (I certainly feel 200 %) however, they also may cause weight gain, (I looked like a zeppelin) weaker bones and increased danger of catching (chest) infections. Which is what they are trying to avoid.

Don't stop taking steroids too quickly, always consult your doc.

Anyway, It is often a balancing act or an approach to be tried for a while to see how you react. Either way, you can get lots of info on here at your own pace rather than when you are in front of your doc. Hope that helps a bit