Jan 11 – My appointment with Boy Wonder immunologist a few days ago

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I have to write this appointment up.  Just so I remember.  The appointment wasn’t a complete write off, but his attitude was.  After waiting two hours to see him, he basically told me that there is nothing he can do unless I taper off prednisone.  And while I’m at it, I need to exercise.

These are valid suggestions.  My other immunologist told me the same thing (minus the exercise remark, because she believed me when I told her that I DO exercise). And I put myself through pure hell following her taper. I got to 3mg of prednisone before I went into adrenal crisis.  She was able to run her bloods, which showed an elevated eosinophil count, but not elevated enough for her to get excited.

Then I was given a megadose of steroids, hopsitalised for a day to be rehydrated, and life went back to the way it was before. All that, for nothing.  She had one theory, and when that didn’t pan out, she just told me to take the steroids again.  Not that there was a choice, adrenal crisis is a life threatening emergency.

Tapering down on steroids is hell on my body.  I get to 10mg or so and I literally go into collapse.  I can’t stand up without intense dizziness, I have terrible diarreah (passing yellow water, like in the final stages of colonoscopy prep), I am so fatigued I can barely walk, pain levels shoot up, I can’t keep any food down, I can barely keep water down, and I become a non-functioning person. I lie on the couch and I sleep.

It’s actually very dangerous.  But doctors just think I’m a drama queen. They know its hard getting off steroids, but they say I should persevere.  But last time I actually had an adrenal crisis. That’s a life-threatening situation.  I have now been diagnosed with adrenal insufficiency, which means my adrenals don’t work.  They don’t kick back in, no matter how slowly I taper.

Now this immunologist wants to do the same thing, without listening to me about what happened all the other times.  He believes I have an eosinophilic disease. He is investigating me for various slow-moving cancers, CML, lymphoma, myeloma, eosinophilic cancers. 

He can’t get accurate tests results because eosinophils are very sensitive to prednisone.  Its one of the reasons my eosinophilic esophagitis is so confusing to my doctors.  The doses of prednisone Im taking should be curative. There should be no eosinophils. But there are.  Biopsy proven, unequivocal.  But generally speaking, even low dose steroids suppress eosinophils, so to find out what’s wrong with me, I have to taper down. 

Fine.

I understand this. But HE doesn’t understand what he’s asking me to do. The effect it has on my life.  He ‘tut-tuts’ me and makes me feel like a baby. 

I know I’m strong. I know I’m tough. I know I can push through a whole lot more pain than the average person. Been there, done that.  I really object to being treated like I’m just soft.

Its not what he’s saying, its how he’s saying it.

He is making the typical mistake, the worst mistake that most doctors make: he profiled me.  He decided in 30 seconds, by the way I look, my weight, my age, he decided who I am and what kind of person I am.  And we were all taught way back when we were little that you can’t judge a book by its cover, weren’t we?  But doctors do it ALL the time.

I’m 48.  Overweight.  Medically obese. I have lower back pain which is a red flag to doctors for a hypochondriac. I take opioids which is another red flag. I have rheumatoid arthritis, which is one of those diseases that mostly women get and has a reputation of not being as bad as people say it is.  And the whole picture he gets is fat, fifty, lazy and untruthful, because I clearly must be eating more than I have written in my food diary, and doing less exercise. 

Which is about as far from my personality as it gets. I exercise through some pretty hideous pain. I know it will cause pain, I do it anyway because my heart needs it.  I push myself hard.  I can stick to a restrictive diet. I don’t cheat. On any level.  That whole cliché of ‘you’re only cheating yourself’ rings true to me. 

We all have different personalities, likes and dislikes, behaviours…and these things affect how we manage our disease, how effective treatments are, how compliant we are as patients…our personality matters.  A lot. But if you get that personality profile wrong, you get everything else wrong too.  Bottom line, he is giving me the incorrect treatment because he has incorrectly assessed who I am.

Him advising me to try to exercise more offends me deeply, as I’ve already told him that I DO exercise as hard as my body will allow. Which is harder than most healthy people, given that most healthy people don’t exercise at all.

His advice that I should exercise is not only offensive personally, but it tells me that he isn’t listening to me, and he doesn’t believe me.  And I don’t believe a doctor can help me if they don’t understand who I am as a person.  He will continue to get it wrong, as so many other doctors have gotten it wrong, because I am not the stereotype they paint me as.

But back to prednisone.  I tried to explain to him that I’ve done this taper FOUR times already now, and I know what will happen.  I told him I would go into complete collapse and no longer be able to function. I told him it wasn’t just steroid withdrawal, that it doesn’t matter how slow I go, the same thing happens.

He then implied that with a ‘negative’ attitude like that, of course I will have trouble.

I told him I am NOT negative. I’m a positive person. But facts are facts.

He gave me a look that said “yeah, right” and carried on talking.

He can’t do any more diagnostic tests, bone marrow biopsies, investigate the mild abnormalities on my blood work further UNTIL I get of prednisone.  And if I decide not to, then there is nothing more he can do.  And he reminded me that the side effects of prednisone are severe, and they will be fatal.  Just a matter of time.

He then asked me if anything new had happened, and I showed him my swollen ankles, and told him about the edema.  He recommended a heart echo immediately, I told him I was already booked in for one.  He said this was a prednisone side effect. That it was causing fluid retention and the fluid was accumulating around my heart, making it hard for my heart to beat properly. Fluid also accumulates in the lungs, which is why I’m so breathless.  Left to continue, it causes Congestive Heart Failure.

He said the heart is also one of the places in the body where eosinophils are known to attack, causing heart failure, so he again reiterated I need to get off prednisone before things turn really nasty.  He suggested diuretics in the meantime, to get rid of the fluid and allow my heart and lungs to work properly.

I told him I’ve already been prescribed Lasix (stronger diuretic than I was previously on).  I’ve been told to elevate my feet and limit my fluid intake to 1.5 litres daily. 

He agreed with that treatment and was happy with my GP managing the heart problems, and that I am seeing my cardiologist.

He then reiterated that prednisone was causing me a lot of problems and I needed to get off it in any case.

I know he’s right, but it comes down to HOW he said it, and how he treated me.  I’ve been very sick for over ten years. I’m not a small child. I’m not an idiot.  He was condescending, and off hand. I felt like he didn’t like me much and had decided I was a whiner.  Gone was the intrigue about my bone density, my hearing loss.  He didn’t want to talk about my rare bone disease anymore.  He wasn’t fascinated by my eosinophil count, merely annoyed.

Maybe he’d just had a long, hard day, but I thought HE was very negative.  He was quite brutal with the assertion that there is only one way to arrive at the correct diagnosis, and that if I continue to take my chances with prednisone, I will lose.  No sugar coating there, that’s for sure.

He didn’t outright say I will die soon, but it was a clear implication. Which sux. I don’t have any desire to die.

I also have no desire to spend the next 10 months tapering off prednisone.

I told him I would taper down, but I’d do it quicker. Doing it at 1mg a month is condemning me to a whole year of misery, pain and being too sick to stand up.  I’d rather go faster, minimise the time span.  He said that isn’t safe, which disagrees with my other doctors.  I have tapered 1mg per fortnight before.  The lower you go, the slower you need to go. I know I can taper to 10mg quickly. Then taper fortnightly to 5mg, and then go much slower.  By 5mg I should be well and truly sick enough to get his attention.

I don’t really have a choice.  My current heart condition means that my doctors won’t let me stay on prednisone, regardless.  My heart will fail.  Long before some obscure eosinophilic leukemia gets me.  So taper it is.

But not right now. Its Gamerboy’s 18th birthday in two weeks. I’m not going below 12.5mg before then.  I  am not missing his birthday, it’s a massive milestone. And I want to celebrate with my son.

And then, I’ll taper at 1mg a fortnight.  And maybe something will be different this time.

2 COMMENTS

  1. Neen in the US we taper by the week. Uusually 1 -2 MG per week. For a long time user we would likely go at 1 MG per week. I know I cannot use it to start with because of the impact on blood sugar. But when I have had to have it I have been tapered on a weekly calendar and usually it takes 6-8 weeks. I wish you well as you taper. I knwo it will be rough.

  2. Good luck with the taper. I weaned off all my meds last year – it was awul and took months (maybe half the year) – but now I am on the other side, I can start afresh with a new assessment of where my illness is at knowing that there are no drugs in the system to mess with the symptoms and results.

    I too have suffered adrenal crisis and have the same adrenal insufficiency diagnosis. It is a scary place and I don’t blame you for kicking up a fuss about your concerns. No one wants to go back there! I can’t understand why a dr would be dismissive about something so important. Maybe the drs are doing what they always do – having to weigh up one evil over another. How do they propose monitoring your condition as you taper?

    Good luck with the tough decisions.

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