Thursday, 14 May 2015

Wait? What?

Image: me with sensors for sleep study attached.
Yes, I have done a sleep study.
I don't know if you recall, but I had to make a choice about travelling to Brisbane regularly to see the rheumatologist who diagnosed my lupus and has been my specialist ever since, or to go to someone local.

I opted for the local specialist, rather than the train trip.

Right now, I'm wondering if I made the right choice.

On my first visit, the new rheumatologist looked at my blood test results, poked and prodded my sore spots and told me my lupus was inactive, but I had fibromyalgia.

This week, I had my second appointment with him.

He advised me I don't have lupus.

This would be good news. It would be really, really good news.  But for it to be true, a number of other specialists would have to be wrong, and I would need several other diagnoses to cover all the symptoms that one diagnosis currently covers.

So what's he basing this on? I think my blood tests.  Lupus doesn't always show up on blood tests.  When it's not flaring, or is controlled by medication, it's even less likely to show up.  So my blood test looks healthy. (Well, not quite.)

Last visit, this specialist started on weaning me off my drugs.  He started by reducing my methotrexate (for lupus), but also decided I didn't need my cholesterol drugs because my blood test showed my cholesterol was good (with the drugs). He also took me off sulfasalazine (for lupus, but specifically for my gut symptoms.)

This visit, he put me back on the cholesterol drugs.  Why?  Well, because even though my cholesterol looked fine on the blood test while I was taking them, it's terrible when I don't take them.

I reported that without sulfasalazine, I can't even get away with a tiny bit of gluten occasionally.  He said I am coeliac.  Actually, I've had several gastroenterologists over the years check and recheck that. I've had gastroscopies and colonoscopies.  You name it, I've had a camera look at it.  I'm not coeliac.  The new rheumatologist said they're probably wrong, and if they didn't take a biopsy, they wouldn't know.  (Biopsy of what? They didn't find anything abnormal to test.)

I also told him the results of the tests the gerontologist had done, that the only physical thing she'd found was vascular changes in my brain, which she said was "just normal lupus" and would be throughout my body. The new rheumatologist said she was also wrong, and that it would be migraine.

He suggested I probably had sleep apnea, which would explain my fatigue. I'm fat, I must snore. I do snore. I don't have sleep apnea.  Have I had a sleep study done?  Why yes I have. Well, fibromyalgia can cause fatigue as well.

(He didn't mention my frequently fluctuating liver function. Maybe he thinks I drink.  I don't.)

The next drug he wants to wean me off is prednisone. I'm on five milligrams a day. He wants to take it down to four a day for a month, then three a day for a month, and so on until I'm off it completely. I've tried this before.  A previous doctor helped me get from 25mg a day to 5mg a day.  When we tried to get lower than that, I got sick.  I got very, very sick.  I mentioned this to the new rheumatologist.  He said: "People with fibromyalgia feel fantastic on steroids, they don't like to come off them."

My photosensitivity, he didn't attribute to any particular cause, just noted I'd had it for a very long time.

My big fear is that the same thing will happen with the lupus drugs as happened with the cholesterol drugs: that he will take me off them until a blood test proves I need them.  For me, by the time lupus shows up in a blood test I'm in agony, unable to move, too exhausted to get out of bed, and pretty much helpless.  Worse than that, lupus, out of control, can damage any organ of the body. I had a hysterectomy because of unexplained, horrible symptoms.  Who knows if the next organ to go nuts might be one I actually need (like the liver that's frequently iffy anyway)?  Do I really want to take that risk just to prove a point?

I haven't taken my latest list of medication changes to the pharmacy.  Instead, I've made an appointment to see my GP.

The way I see it, I have three options:

  1. I continue with this rheumatologist and have to accept that every other specialist I have ever seen is wrong and that my one diagnosis should be replaced with several.
  2. I see a different, local, rheumatologist. One that other local lupies have said is good.
  3. I take the train trip to Brisbane every few months, and accept I'll need a week or so to recover.
If you're wondering, I'm really only seriously considering options 2 and 3.  I'm going to discuss it with my GP before I make my final decision.

Oh, now another minor point.  Comparing notes on experiences with rheumatologists, another lupie who tried this one and then changed, said this one doesn't actually believe in lupus. I hope that's not really true.  A rheumatologist who doesn't believe in lupus? That's as crazy as a climate scientist who doesn't believe in climate change.

Related Posts:
Not All In My Head
To Sleep, Perchance to Dream
Vampire Life


  1. Bravo Bravo! TY for writing about your experience with docs who take you off pills because the pills are working. So a rheumatologist who doesn't believe in lupus? Yikes.

    Glad your taking option 2 or 3. What a nightmare! So sorry your going through this and I cringe every time I hear this story from friends with lupus. It happens WAY too often. Makes you wonder how some of these doctors made it out of medical school.

    Can't wait to hear how it goes-and do not go off your meds for this guy. Imho you have nothing to prove. He's proving he's inept all by himself!!!!

    HUGZ, Julie

  2. Well, if you need to see regularly a doctor because of an autoimmune disease, it's better if you trust him, and he trusts you and your medical history, or at least asks your previous doctor for some informations ... Option 2 sounds good to me ! Claire

  3. This is a terrible situation, and I've heard other people have had to deal with it (I'm sorry to say). I am so sad that you're going through this :( I'm glad you're not taking this awful doctor's advice. Good luck and God bless as you go forward to see someone else!

  4. This sounds horrible, and I can definitely relate because my (now former) GP tried to do the same thing to me last year and threw me into a 6-month long lupus flare. Please find a new rheumatologist! One who listens to you *and* keeps up on current best practices. You may find this article interesting:

    Listen to your body and don't let a presumptuous doctor (who appears to be deficient in listening skills and empathy) talk you out of what you know to be true.


  5. This new doctor is NUTS! It's a shame that some people are going to have to suffer too long because of his ignorance.


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