Hi Christine,

I’m sooo happy your forum includes “human health” .   I got "something" while diving and I'm looking for help on how to cope with the side effects of taking prednisone/steroids. 

Two weeks ago I was diagnosed with:

-Hypersensitivity pneumonitis in both right and left lungs
-nodules and infiltrates in both lungs
-pulmonary fibrosis in my right lung. 

With the pulmonologist office that I go (5 doctors, some over 20+ years of practice) said I am only the second case they have seen with this problem. Lucky me!!

Back in July (6^{th -} 9^th) I had gone diving in Key Largo to get my PADI in SCUBA diving.    Prior to the trip I had purchased my wetsuit, fins, snorkel, mask, boots…but rented the BCD and Regulator.

There is now a very strong suspicion by my doctors that there was  ‘something’ harboring in the regulator.

Around July 12th I started to notice a pain in my upper right back (under my shoulder blade) radiating through to my right upper chest.^.   At the beginning I thought it was due to the part of the training where you take your vest on and off in the water.  The waves were making it challenging to slip the vest on and off so I thought maybe I just pulled a muscle or something by straining to do it.

The next few days the pain increased to the point of an attack of sharp pain bring me down to my knees on the 16^th. At that point I went immediately the ER.

They did blood work, an EKG and then finally a contrast CT to rule out a pulmonary embolism. 

“Masses” in both lungs were seen with the CT.

I followed up with a pulmonolisgt.   She had be go on antibiotics to see if it was an infection that could be treated.   A repeat CT was done 4 weeks later and showed the masses did not decrease.  With no decrease of the masses/nodules/infiltrates a lung biopsy was performed on Sept. 22. (Long annoying story on the holdup..ending with they even had the WRONG lung listed to do the biopsy on!!  I caught it when I went to sign the release forms!!!).  After that I ended up taping a note on my back the day of the biopsy so the doctor would remember it was my RIGHT lung and to remember to include tests for both for Mycobacterium Marinum and Mycobacterium Avium.

I went back two weeks ago for the results.  I was told cancer has been ruled out as well as any of the mycobacteriums.

So far, they don’t know what is exactly in my lungs.  The larger 'clump' in my right lung that seems to be causing the most pain but I have burning/irritation in both of my lungs presently.

On 10/6 I started a course of Prednisone (40mg a day) and I’m to have a repeat CT done 8 weeks from that visit.  Hopes are that the steroids will start to calm the hypersensitiny pneumonitis and shrink the ‘clumps of whatever’ in right lung.   It is unsure if the steroids will work or not.  From what I understood, if the CT shows any improvement then I will remain on the steroids for 6+- months.  If not she said we have to go from there. 

I’ve been on the steroids for 2 weeks and the pain is still there.  However, the steroids are starting to show their lovely side effects.   The ‘moon face’ started two days ago and yesterday my entire body has now started to get all puffy and smooshy...rings are off and fingers to my toes is swollen.   If I touch/scratch my face..even when I wash my face I get deep red marks that take ½ hour or so to disappear.   So I can tell my body knows the prednisone is present except it hasn’t helped with decreasing the pain yet.  I don't think that is fair at all!!  I'm hoping relief from the pain comes soon.

I have been warned to make sure to eat while taking the prednisone.  I have to take the pills three time a day, so i do it following a meal.  “Complex Carbs” are suppose to help protect my GI track from the steroids.   I need suggestions so I don’t end up like “two ton Tilly” at the end of this.  Eating makes me feel better..but eating too much will make me fat..so I need to eat as carefully as possible.  My stomach burns sometimes if I don't nibble on something.

I need suggestions on how/what to eat.

They say you can get mood swings with this medication…so far I feel at times that everything is ‘right in my face’ but I don’t have feelings of anger at all…just horribly nervous/scared..I just get tears rolling down my face very easily…which is freaking everybody else out around me.   oh and insomnia!!! OMG!!!  I have been mostly awake then asleep in the past 5 days.  I’m not really tired though..the nervous feeling keeps me buzzing about.  I assume I will crash soon.  I’m trying to rest but I haven’t figured out how to yet.  Any suggestions on how to deal with this stuff would be great.

I’m starting to get a sore throat and swollen glands in my neck.  I think your immune system is weakened by the steroids…so I’m also looking for advice to try to stay well as possible.


Here are some shots from that dive trip....

After all the training and open water dives I brought my camera in...and this was my FIRST photo!!!



some other random shots...





in the photo...Bob Fenner, Me, Josh Solomon and Tom Close ...and maybe one icky regulator!!

Hi Linda,

What an ordeal! First of all, I'm glad to see you are under the care of physicians you trust. That is important, and don't e afraid to say on top of your care by making phone calls and getting results in a timely fashion. It is YOUR health :)

With regard to the Prednisone--everything you are describing are very common side effects. The "moon face" you describe is from fluid retention, not necessarily weight gain, so commonly when the pred is discontinued it will go away after a while. You could ask your doctor if there is something that can be done, but diet will help--not so much for prevention of real weight gain but for the fluid retention. So, common sense stuff--watch salt intake (not too little but I'd pass on the whole bag of salty chips or Chinese food). drink plenty of water (counterintuitive, but water helps your kidneys lose salt). Eat a healthy diet and most of all try not to drive yourself nuts worrying about how you look--your lungs are much more important.

The other thing that prednisone can do is mess around with blood sugar, and that is why your doctor recommended complex carbs--these take longer to be digested and enter the bloodstream and don't give your body the rush of simple sugars that junk food does.

Mood swings: not to be flip about it, but with masses in your lungs of unknown origin, drugs in your system, and a regular life to keep up with you're allowed to be more on edge than usual! Keep in touch with your doctor (or doctors), and be as thorough in telling them how and what you are feeling as possible. The best doctor in the world can't help if the patient hides symptoms. They will be able to assess the level of edema (swelling), monitor your blood glucose if they feel it is necessary, and either continue on the course you have or alter your dose.


So, now to the cuase--it is indeed an intersting case, and there are lots of things that can irritate your lungs. It is a shame that the illness didn't come on quickly enough that the regulator you used could be tested (because you know, on House they would have broken into the dive shop and got the regulator :) ). Mycobacteria, if that is what it is, does take a very long time to grow and doesn't always show up, so mu gut feeling there is that just because one test came back negative it's still not impossible. Other things in the regulator? I would hope if it were fungal they would have been able to culture it. So that leaves chemical or particulates. I don't know enough about dive gear to be able to even guess, but perhaps a cleaning agent, a degrading piece breaking down, contaminants from the tank? I hope some dive people can chime in and make some guesses.

Thank you so much for sharing your pictures, and I hope that a) you make a full recovery, and b) this doesn't put you off diving.

And thank you for sharing your story as well--I am hoping that we can accumulate these kinds of things so that when people have mysteries on their hands we can look to previous experiences to figure out what is going on (and how to prevent it.

:)

dang!! I can't believe I'm back this soon with another question...

I was cleaning a nano tank today with my tomato clowns in it. When the female came over to bite me, like she usually does, I jerked my "gloved" hand out of the tank. However, I scraped and cut my forearm on the plastic rim of the tank.

I rushed over to clean the scape with hot water and soap and then cleaned it with Hydrogen Peroxide. It's not looking quiet right at the moment..ugh!!l I guess I'll go for a walk in appointment at 7AM but was trying to think of what else I can do to stop it from getting infected. Any suggestions?

Took me a bit but I finally realized to try a triple antibiotic cream...that seemed to help calm down the red and hot feeling of the scrape.

with Mycobacteria...from what I understood from my doctor was that the first test either rules it in or out...if they do detect it then the particular kind can take a long time to determine.

Is the "yes or no" part correct that you know of?

I do know that it is extremely difficult to culture and that the cultures take a long time to grow. And yes, once they figure out that is what it is, in order to determine the species (the genus is Mycobacterium) they need to do more specialized tests (you can't tell just from the run of the mill identification systems.

If your doctor is confident that the Mycobacterium test is definitely negative, I'd trust that. What I intended was that often it just doesn't get picked up in a sample because people don't look for it. In your case it is different--if they know that is what they want to rule out, they can take tissue samples (Mycobacteria grow in granulomas, which can be seen and sampled) that are likely to harbor the bug. So you did the right thing by asking for that culture ahead of time.

Cuts and scrapes--in general if there is an infection (in an animal, a person, a fish) you won't see that right away. It takes time for the bacteria to grow. Signs of infection later include warmth, redness, pus (that's an obvious one ;) , fever...

Another thing that happems probably more than people think is while fragging stony corals, if no gloves are on, little slivers of skeleton can cut into your hands. You may not even know it until later. It happened to me-I cut a huge Pagoda coral into frags, and afterward I noticed tiny cuts, like paper cuts, on one knuckle. I cleaned them, but they just healed kind of lumpy and itchy. What had happened was tiny splinters of skeleton were in the wounds. Eventually they worked themselves out, but it was uncomfortable.

I was just looking at the regulators in the photo above....

Look at Josh!!...too funny..lol... He took his regulator out of his mouth to smile!!

Christine,
Thank you for your time and advice on this.  You really made a difference!!

This part your wrote:

"Keep in touch with your doctor (or doctors), and be as thorough in telling them how and what you are feeling as possible. The best doctor in the world can't help if the patient hides symptoms. They will be able to assess the level of edema (swelling), monitor your blood glucose if they feel it is necessary, and either continue on the course you have or alter your dose."

Tom was with me for the doctors visit and interpreted this the same way as I did.  She told us all about the possible side effects (retaining water/weight gain, mood swings, insomnia, thinning skin..etc) to them medication but then said "call if your eyes get blurry.  Blurry eyes are an indicator that you are taking too much prednisone"  So we both thought the side effects could be expected and I was to just deal with it...not to call her to tell her "yeah, I'm getting the side effects you told me I might get"

I am so happy I took your advice because...

My doctor cut my dose in HALF today because of the amount of edema and how my skin tore when I scratched my back from an simple itch.  She also gave me a diuretic and sleep aid to help get me back on track.

so thank you....I think tomorrow is going to be a much better day :)

Hopefully you are feeling better. I absolutely despise Prednisone. I was on it and got pneumonia 4 times in 3 years. Did my own research and this weakens your immunie system. I stoped taking it, got it the following year but have not gotten it since.