Sarcoidosis and diving

[Duke Dive Medicine]

Thanks for your response @DocVikingo . Until I see a diving doctor (hopefully tomorrow) I'm hanging onto the facts that I haven't had any pulmonary symptoms, that my scans show up much more inflammation in lymph nodes than in lungs, and that anecdotally patients whom have identified symptoms overnight have a lesser chance of experiencing chronic illness.

My physician has prescribed a relatively low dose of predisonole (15mg), and wants to start weaning me back after 2-3 weeks. So at this stage I'm hopeful, but not holding my breath (no pun intended)

It sounds like you have a good handle on some of the problems that can occur. Air trapping would be the main concern as DocV alluded to. Abnormalities in the lung could potentially act as one-way valves and prevent air from venting on ascent, which could lead to pulmonary barotrauma. We'll hold out hope for you.

Best regards,
DDM

 

[DocVikingo]

My physician has prescribed a relatively low dose of predisonole (15mg), and wants to start weaning me back after 2-3 weeks.

Hey froop,

Oral prednisone is the most commonly used first line of drug treatment for sarcoidosis in patients without compromised liver function. It is very similar to predisonole and some of the differences are rather technical, but suffice it say that prednisone is activated to prednisolone inside the liver, while prednisolone is active itself without such metabolic processing.

The recommended initial dosage of oral prednisolone may vary from 5mg - 60mg per day depending on the specific disease entity being treated. As such, your reported prescribed dose of 15mg is indeed a relatively low one. As you have denied overt symptoms of lung involvement, e.g., shortness of breath or coughing, you may not notice any immediate effect from the drug.

Regards,

DocVikingo

 

[stiebs]

Hi @DocVikingo ,
Yes, I meant prednisolone, not prednisonole
I read up on it, and made the assumption, correct or otherwise, that prednisolone was chosen over prednisone because my pathology results showed reduced liver function.

Visited the dive doctor this morning, and he pretty much told me what I expected to hear. That as long as I have signs of an active sarcoidosis, diving is off limits. The path to get me back in the water is to continue seeing my treating physician until such a time as chest xrays show a clean result, then a CT scan to show any indications of scarring (CT scan preferred, but only necessary once xrays show little to no sign of granulomas . At that point the resolution of a CT scan would be required)

So when (if) my CT scans come back with no, or acceptable, levels of scarring, a satisfactory PFT will give the all clear. Up for discussion, debate or dispute is exactly how much (little) scarring constitutes and "acceptable" level.

 

[DocVikingo]

Yes, I meant prednisolone, not prednisonole. I read up on it, and made the assumption, correct or otherwise, that prednisolone was chosen over prednisone because my pathology results showed reduced liver function.

Based on my immediately prior post, that is an entirely reasonable assumption.

Up for discussion, debate or dispute is exactly how much (little) scarring constitutes and "acceptable" level.

Unless lab results come back with findings of no or only very minimal scarring, this is going to come down to a call largely based on medical art and level of acceptable risk.

Regards,

DocVikingo

 

[stiebs]

Is there any benefit in monitoring my lung health using home a home spirometer and/or oximeter, or is a properly administered PFT the only way to really test lung health?

 

[sheeper]

Is there any benefit in monitoring my lung health using home a home spirometer and/or oximeter, or is a properly administered PFT the only way to really test lung health?

really a proper PFT is the only real indicator. During my bout, I did try/use several home-brew test methods. Those did give me an idea that I was improving/feeling better. The best test was actually no test at all. Just working out heavily in the gym, treadmill work, etc was the best test. As my medical testing showed improvements, I could feel that I was breathing better, feeling better when I pounded away in the gym.

 

[Duke Dive Medicine]

Lung health is a broad term. If you're talking about progression of sarcoidosis and lung health for diving, your physician's office is the best place to have that assessed. Home oximetry is a pretty blunt instrument for that.

Best regards,
DDM

 

[fmerkel]

If an oximeter is accurate and used correctly (questionable on some of the new Chinese cheap units), and your SaO2 gets down below 85 you're in some potentially serious trouble, but you would know that without the oximeter.

Peak Flow meters are useful, but more for asthma than the issues you have. They certainly won't hurt anything, but aren't in the same category as a full spirometry.

Sheeper has a good point. If you push your aerobics a bit and pay attention you'll know much of what you want to know.

 

[stiebs]

So while I'm in a holding pattern without being able to do anything with my shortlived reinvigoration for diving and a few sets of freshly serviced gear, I can only hope that my sarcoidosis is (relatively) short lived. Next week I have my first follow up CXR and physician appointment, which if I'm lucky will at least give me an indication of which direction I'm heading in.

In the meantime I've also been fruitlessly agonising on what might have brought this on, despite the abundance of literature that indicates that the cause is largely unknown. Working on the possibility that sarcoidosis is sometimes thought to be triggered by some sort of reaction to infection, virus, bacteria or the like, I wonder if these two factors of my return to diving may actually have contributed, or that the timing with my return to diving and the onset of sarcoidosis was purely coincidental.

1. About a month prior to first symptoms was my first dive. 5 metres, 50 mins. Newly serviced regs, but using a tank that had been sitting filled with air for about 3 years or so. Will never know if the air was OK, but have no reason to suspect otherwise.

2. About a week prior to first symptoms was another dive, this time doubles (different regs, also newly serviced), recently hydro'd tanks, EAN26, 26m, 45mins. But my primary diaphragm wasn't seated properly so was breathing uncomfortably wet for most of the dive, especially when I wasn't in horizontal trim - a regular occurance on this dive as it was a wreck dive with many swim throughs. So I wonder if salt water aspiration could be a contributing factor? But I felt no other malaise after the dive other than a salty mouth,

Reading back, I didn't actually elaborate on how I got to my diagnosis. I never experienced any breathing related symptoms .. for a few days I had progressively worsening plantar fasciatis, to the point that I couldn't get out of bed in the morning. After a few more days, one ankle became arthritic. A couple more days and the other one did too. My GP was concerned with my blood tests and fever, so sent me to emergency. That's when further pathology and CXR/CT along with erythema nodosum appearing on my legs was sufficient for diagnosis.

It is only now that I know there are granulomas in my lungs that I'm either aware of shortness of breath, or subconsciously believing that I should feel it .. so I do.

 

[stiebs]

Well so far looks like things are as positive as they could be. Had another chest X-ray and blood tests on Friday, and saw my doc this morning. Pathology is all pretty much back to normal, and XR looks pretty clean too. She's weaning me from 15mg predisolone down to 5mg over 4 weeks (15/12.5/10/7.5/5) and a CT in 6 weeks from now.

I'm not going to get ahead of myself though, especially after most of my reading suggests at 12-18 month recovery at best.

The bad news on the other hand, is that I have been much more aware of being short of breath when doing physical activity. I've started lap swimming again for the first time in a while, and am really noticing it. Maybe that's just my body telling me I'm unfit