M. Scott Johansen
ABPA & prednisolone
I`m 71 year old, male, living south/east in Norway .
Since 7 years old I got asthma, which developed later on to chronic obstructive pulmonary lung disease (copd), and have therefore used a lot of prednisolon during the years combined with antibiotics. In 1993 I got a lung cancer diagnosis, and by surgery, my right lower part of the lung was removed. I was told after the surgery that it was a “good one”.
Years past and every winter I got 3 to 4 lung infections, treated with pred. and antibiotics. However abpa was not, to my knowledge, showing up before 2004, and I did not know anything about it as I believed that my surgery I 1993 was just a “good tumor”. In 2004 I got real seek due to lung infection which none drug could cure. Again, after infinite number of bronchoscopy, I was told that it was suspected lung cancer. Just before surgery however, one doctor stopped it, as he suspected some other reason. Going back to result in 1993 it was confirmed that indeed it was aspergillus. Later on the doctors admitted that in 1993 their knowledge of aspergillus were rather low as it was – and still is – a rather rare illness in Norway( or maybe under diagnostics.) The fact is that I`m the only patient at one of the main university hospital in Oslo, having flare up every year. I was, as most of you, treated with pred. and sporanox that helped for the time being. The strange thing is that since then, once a year, I have only one flare up of aspergillus – and at the same time; end Mai primo June. Why? Don`know, but it is springtime/early summer, whatever that means as for aspegillus. But surely something is in the air at this time of the year. It normally takes 5 to 7 weeks to get rid of it with help of pred. and Sporanox. Starting with 30mg pred. for 2 weeks, and then reducing 5mg./week. Sporanox 400mg/day for 5 to 7 weeks.
Fortunately, I have a doctor with a small lab, where I can measure infection level (crp) and IgE level whenever I wish. My normal IgE is rather high, pending around 1300 when condition is good. Max. has been12000 and lowest 975 measured around 5 times each year the last 8 years. When flare up, IgE level increase to around 6000 within 10 days. Infection level is very low (around 15-20) so it difficult to diagnosis due this measurement except that breathing gets harder. Therefore, IgE level seems to me to be perfect to managing the level of Aspergillus. Sure, doctors have further advanced measurements to get the whole picture, but for me the IgE level is accurate and understandable. As for what is normal IgE level there are many opinions, but most experts I have asked put a limit on max. 1500. Ideal is under 100!!
As mentioned I have used a lot of pred, and in the latest years I have started to pay the bill!
2006: within a few weeks my view got rather foggy, and I was diagnosed to have cataracts, which was cured by laser surgery. I was told that excessive use of pred. speed up this illness.
2008: on a brisk walking on a nice early morning in Spain, I suddenly lost control of my feet, and fell over. When finally entering a hospital (recommended) it was diagnosed to be Achille failure as the Achilles tendons on both legs were torn. Extremely rare that it should happen in both legs at the same time! The doctors first question was; are you on pred? Oh yes indeed! 4 weeks in a wheelchair gives you some perspective of another life. The flight back home was a nightmare.
2010: late summer I got very tired and exhausted. After endless examinations it was stated that I got adrenal failure (secondary failure), which in many (maybe most) cases is a result of long time use of pred. As sure many of you known when adrenal failure, more or less none cortisol is produced. Cortisol is necessary to cope with daily stress. Countermeasure is, ironically, 25mg/day. cortison (which is “equal” with 5mg. pred.) The production of cortisol is managed by the pituitary (a small “peanut” in your brain). When long time use of pred., the signal to the adrenal gets to high, and after a while the adrenal start sleeping, reducing or stopping the production of cortisol. When that happens you will feel very tired and completely out of normal behaviour.
2011: In connection with adrenal failure, doctors also suspected low bone density. Test was done,( special X-ray) and yes, I was low into the red scale and told that I got osteoporosis. Suspected reason; using pred. on a high level for a long time. I have to add the fact that osteoporosis is more common in Scandinavia then in the rest of Europe, reasons unknown. Countermeasures; A daily shot of the drug Forsteo, every day for 2 year which will to a certain degree rebuild my bone density. This treatment can only be provided once in your lifetime. Same year they also took vitamin tests and I was told that vitamin D was none existent. This is claimed to be very common for older people and for sure it don’t help your bone density.( I believe Mr Graham Atherton once told us about this matter, combined with abpa, on this site ). Inthe report it was concluded; ”. In other words most patients who had ABPA also had lower levels of vitamin D.”
I was put on D-Forte (30.000 IE) a week for 4 weeks, and then one D-Forte every 3 week as maintenance. Unfortunately, I started too late with Forsteo, as I already experienced a compression fracture in my back in last October, fortunately rather high up (H7). Though rather painful.
Of course may age is a factor in this matter, but I regret all the times when told by the doctors when having lung infection; “yes take antibiotics and add pred. also – just in case!!!!!”
Lately (last year), I have reduced pred. with 50%, and guess what, antibiotics does the job in case of just my “normal” lung infections. However, when flare up of aspergillus I just have to use pred. as Sporanox do not work alone. We are all not the same person, and one case is none case as doctors put it, but to my experience doctors generally are too conservative and the more expert, the more they tend to only concentrate on your lung problem or whatever illness you suffer from. They don`t want any backfire in their area.
I have asked the doctors for replacement drug for pred. but so far none positive response. Either they state that they have none experience with “new drugs” or don’t want to speculate in new drugs as old and proven pred. do the job.
It is not my intention to frighten anybody but just to consider the amount of pred. and try to find your own limits. But never take it “just in case”, and if you find substitute it might be a better solution. And tell us on this site if you have tried replacement drug which seems to help. I have noted some of you who have tried Xolair and I think it would be very interesting if all of you tell us about your experience as prednisolen is a wonder drug, but it has too many dark sides. And to my knowledge 90% on this site use pred. so the importance to find substitute drug should be rather important for all of us.
I`m now fed up with the winter season and will go to Spain for 6 weeks, starting 22.febr. – and get some D vitamin the natural way.
Thank you for reading and excuse my misspelling and other mistakes, as English language is my second (or maybe third) language.