Feb 2017 Immunologist appointment

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Yesterday I saw my Immunologist.  She’s dedicated and a really caring lady.  She’s also quite fascinated with my case, and hasn’t gotten bored or frustrated or given up yet.  Most docs do by now.

She has doubled checked everything, and I definitely do have Eosinophilic Esophagitis, which should be impossible on the doses of prednisone I have been on.  Apparently Eosinophils (a type of white blood cell high levels of which may indicate parasitic infections and allergies and much more rarely, cancer) are very sensitive to prednisone, therefore my digestive tract should not be full of them.

But they are. Can’t argue with a biopsy.  Two biopsies.

So she’s wondering where else I might have high levels of eosinophils, and her theory is that I have a rare eosinophil related disease.  She wants to do a bone marrow biopsy, but to do that she wants me off prednisone.

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She suspects that the prednisone I am taking now is suppressing the eosinophil count in my blood.  I have had high eosinophils occasionally, but they should be high consistently for her theory to hold.

She checked back over all my blood work (took a while) and found only two occasions with very high eosinophils.  But then she checked the blood results taken the same day when I was in hospital with post gallbladder surgery complications.  The results from the hospital lab and one sent to a different lab were completely different.  I don’t know why they were sent to two different labs, but the hospital lab showed high eosinophils, which she was looking for.  The other lab showed normal levels.  She was confused and concerned, because this is the lab where I get all my testing done.   So she wondered if I was getting false negatives.

One of the labs was wrong, but it could just have easily have been the hospital lab as far as I’m concerned. I’m glad she has a theory, but I can see that she’s clutching at straws a little.  But I don’t want her to quit looking!

She asked about my EoE symptoms, and my diet and she’s concerned that I’m not eating enough.  I told her I am eating more now, working on it, which is true.

She examined me, and said my hands looked inflamed, she questioned why my rheumatologist doubted my diagnosis.  I told her in all fairness, my hands didn’t look like that when I saw my rheumatologist most recently, ultrasound only shows mild inflammation, and most of all, I haven’t responded well to any biologicals.  I have had some response to Orencia and Xeljanz, but nothing really from Humira or Enbrel.

She then explained that she didn’t want me trying any more biologicals, because biologicals can cause the development of an immune response in some patients, an allergic response.  Very rarely, the allergy isn’t confined to just to the biologic drug, but multiple allergies develop.

I told her that’s exactly what happened to me. I started getting swollen lips and tongue from Orencia, and that was just before the EoE diagnosis, and the asthma and explosion of hay fever.

She said ‘Hmmmmm….’

She’s pretty open about what she’s thinking, but sometimes a ‘hmmm’ is the best I’m going to get.

While she was examining me, she noticed my hearing aid. Seems I forgot to tell her about that.   It’s a long list. Sometimes I forget stuff.

She sat down and told me again that she was trying to find the common thread, to connect all my symptoms and find a theory that would account for everything.  She went back over the neurological findings, the chest pain and cardiology labs, the rheumatology, the hearing loss, vision loss, and she said she can’t put it all together. That I have a few things going on that shouldn’t be happening in the same patient.  She was quick to reassure me that she in no way doubted me, or that I am really quite sick, especially as the prednisone taper continues, and she asked me what had been happening since the prednisone taper began.

I showed her the photos of my hands and feet, and she was shocked.  She asked what my rheumatologist had said, and I told her I’d sent the photos, but my rheumy was unable to see me until after the swelling had gone down. She asked how long the swelling lasted, and I said ten days.  She was openly annoyed, and told me that if anything like that happened again, I should call her.

I said it felt like my body went into meltdown with the sudden drop in prednisone, but then got used to it, as least in terms of swelling.  I still have some swelling,  but nowhere near as much. I told her I am still 7kg heavier than when I started the taper, and most of that had to be fluid.  I showed her pictures of what I look like most mornings, swollen eyes, swollen fingers and feet.  Most of it subsides by 9am, and it comes back in the afternoon.

I asked her how it was possible to gain 9 kg in a few days, and then drop 2 or 3 over the next four weeks, week while eating between 600 and 1200 calories a day. I said it had to be fluid.  She said ‘There could be other reasons…’ but wouldn’t elaborate.

Frustrating.  Sudden, massive weight gain is not a fun thing.  Lucky I rarely leave the house, because I have very few clothes that fit!

She asked why I wasn’t eating, and I told her I’m often too tired to prepare allergy safe foods and sometimes when I look at my options, none of them appeal.  So I just go without.   My diet is very restricted, rice, gluten free pasta sometimes, select fruits and vegetables, some beans, chicken and recently lots of beef.  It’s enough to get the nutrition I need, but it takes effort to be make interesting meals.  Sometimes I just want some cheese!  Or sour cream.  I should be rake thin eating this way.

She suggested I go back to my dietitian, in whom she has a lot of faith.  I explained the she is expensive.  My immunologist reiterated that she felt it was important.  So I agreed.  But honestly? This dietitian charges $160 per session, and she doesn’t seem to know any more about EoE than I do. I can do the elimination diet on my own.  I know the difference between carbs and protein.  I can read labels.  I know what they mean.  I used to be a nutrition nazi, and be able to tell you the calorie count and macro breakdown of just about any food.  No, that wasn’t healthy, yes I did have an eating disorder.  But while I’m over the eating disorder, a lot of nutritional knowledge remains.

EoE forces me to be, if not obsessive, hyper vigilant.  But I am well aware of what I’m eating, and where the hidden sources of gluten are in foods and that number 621 is MSG and that most processed foods are off limits.

So I’m not sure if I can spend that much money on someone who keeps suggesting expensive options, like ready cooked rice (who in the world pays ten times the price for ready cooked plain rice in a single serve when they live on a disability support pension???) and soy based meat substitutes that are just highly processed chemical shitstorm frankenfoods as far as I’m concerned.  If I can’t have meat, I’ll go without meat.  If I can’t have cheese, I’ll go without cheese. I don’t want some weird mix of numbers and chemical flavourings in a base of coconut oil.   And if I have to be gluten free, I’ll eat lots of Asian style meals rather than have gluten free pasta that has a horrible texture and not much taste, and again, costs five times the price of wheat pasta.

I can start reintroducing foods, but I’m not symptom free now.  If I do eat something with wheat in it, I usually react very quickly.  Throat closes up, and I can’t swallow anything for a few hours. Dairy is much more subtle, but over time has the same effect.  So I think I’ll just stick to my restricted diet. It’s not like its affecting my fabulous social life…all those dinner invitations I’m turning down because of my food allergies!

But back to the point. The treatment plan.  She wants me to taper right off prednisone.

OMG. Right. Off. Prednisone.

I know that’s a wonderful thing, but it’s also a really hard thing.  My immunologist at least acknowledged same, and admitted it may not be possible.  That if I were literally unable to get out of bed, to call her.  She also acknowledged that this plan would mean a lot of pain for me, and it was just nice to have a doctor empathise.  To show some understanding of what they are asking me to do.

She felt it would probably be safe to taper 1mg every fortnight once I hit 5mg (next week).  She said 1mg a month would be more usual, but if we go that slow we’re talking 5 months of misery.  Which is exactly what I was thinking.  I want this taper to be as fast as possibly, because life is quite bluntly just horrible right now. And no, its not an attitude thing, it’s a physical pain and lack of energy thing.

If I taper 1mg every two weeks, I’ll be there in 10 weeks.  Much better.  Just over two months.  She warned me of all signs of adrenal crisis, and told me not to hesitate but to go to the hospital if my BP crashes, or I crash.

She assured me that I could go back onto prednisone after the tests she wanted to run. But I need to be two or three weeks clear of prednisone to start the testing.  So we’re looking at around 14 weeks.

She understood how unpleasant a prospect that is.

She said again she really felt she didn’t want me to take any more biologicals, at least not yet.  That there was a possibility that some of this was a rare side effect of one or more of the biologics I’ve taken.

Her choice was Imuran, which I tried years ago, but I’m prepared to try again. She told me that if things got too tough, she’d be happy for me to start Imuran to try and get my arthritis under control, or at least manageable.  She asked how much oxycodone I was on, and when I told her she was horrified again.  She said that really has to change. But not now. We’d deal with that later, after we’ve figured out what’s going on.

Honestly all I can think about is 14 weeks before I can start taking any rheumatoid arthritis meds.  I’m already mostly non-functional. I have some good days, but they are few and far between. Pain levels in the morning and in the evening/night are pretty freaking awful.  Waking up every day to horrible pain is getting depressing.  And another 14 weeks at least….that’s a hard thought.

For a theory…one she can’t prove.

But she might be right, and if she is, then I really need her.  So I’ll do as she says.  Keep checking in with rheumy. And I will go back and see my Immunologist in June. THAT brings home how long term this plan feels. June. I’m going to feel this horrible, and probably worse, until JUNE.  Better start wrapping my head around that, accepting it and trying to work with it.

She wants me to do monthly bloods, she’s hoping some markers will appear as the prednisone drops.  As soon as they do, she will order tests, and start me on Imuran.

I know Imuran didn’t agree with me, but I can’t remember why. It was years ago, one of the early medications I tried.  I refused methotrexate at first, so my then rheumy tried plaquenil and sulfasalazine together and prednisone to get things under control quickly.  Then Imuran.  I can’t remember why I stopped taking it, but way back then I had very different expectations.  I thought I’d take a medication and feel normal again.  Or at least feel normal sometimes.

Now I know that is never going to happen, and I’m just hoping for a better quality of life, some improvement.  More low pain days. I don’t think pain free is even possible.

So I’m likely to accept side effects more readily than back in my first year of diagnosis, where I was suddenly in horrible pain that would knock me flat for days and weeks on end…and then get mild for a few days, and then come back.  I was confused and alone and my previous experience of medication was that it made you feel better, pretty much right away.  None of this waiting 3-6 months to see if maybe it would help, while enduring nausea and other unpleasant side effects.  I think I gave up on it too quickly because I was a newbie, and I had unrealistic expectations, and so I am very prepared to try it again.

So in the meantime, the taper continues. My immunologist did say that I could keep tapering 1mg a week, but I should ask my rheumatologist to run a short synacthin test to check whether my adrenal glands are working.  Sounds appealing because I could be off prednisone in 6 weeks.  Sounds unappealing because its more dangerous and adrenal crisis, and maybe a hospital trip, is a much more real possibility if I do that.

But I feel lousy. I’ve felt lousy for a long time.  Yesterday I was given a timeline that means I am going to feel lousy for quite a long time yet.

I wake up every morning in severe pain. On a good day, by 9am the pain is moderate and I can do light work.  By midday I need more oxycodone, or else the pain becomes severe again.  By 3pm I need more oxycodone or else the pain becomes severe again, at 6pm I usually take 20mg of slow release to get me through the night. I also usually have a few glasses of wine to make the pain medications work better.  On bad days I take another 10mg of oxycodone as well.  On really bad days I need to take more around midnight.

That used to represent my bad days, but now its everyday and there is no respite.  I can function, on a good day I can drive my daughter to school and go to the shops for a few items.  On a very bad day the pain meds don’t kick in at all and I don’t leave the house.

It isn’t just the pain though, its the confusion and the exhaustion and the damn headache.

But I just have to find a way to deal with it. I have to do more with less energy. I have to manage the essentials of life with more pain.  I have to get back to regular gym workouts. I have to write. I have to keep life going.  I have to keep my kids going to school. I have to get my daughter to all her medical appointments, which are stacking up at this point.  I have to prepare healthy, allergy friendly food.  And I have to get a lot more sleep.  A lot more sleep, and more rest too.

And keep tapering prednisone.

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10 COMMENTS

  1. In my unexpert opinion a short synacthin test ought to be done when you get down to 6 or 5 mg of prednisone and don’t go any lower until you get the results back.Important to check your adrenal glands will kick in as you lower and may help avoid any crisis if the test shows they won’t or may be slow to start working.Anyway my 2 cents 🙂

    Hope the next weeks aren’t too horrid and you can finally get some answers.Take care xox

    • I think you’re right Rochelle. Having googled some, that wouyld be much safer. Thank you. I will push rheumy to do the test. thanks Xx

  2. Right now if I were you I think I’d focus solely on the kids, nutrition (you have to eat something, especially on all those meds) and rest/sleep. Those are the 3 vital things right now to deal with & anything extra is a huge bonus. You body is struggling so hard right now Neen & I can’t imagine how much pain you’re in, and I’m in constant daily pain, I know RA pain & fatigue.
    Have you considered one of these subscription things that are on the circuit, you pick your needs/dietry requirements and they send out everything you need plus recipes. I’ve seen them on You Tube and blogs and while I generally dismiss this kind of thing as an unnecessary & expensive way of feeding a family, in your situation it might help some. The kids could maybe do some of the cooking to help out?? It would cut out some shopping needs & mean that you would have at least one good meal a day that didn’t take ages to prep and cook.
    I’m fishing for ideas that may help, you may have thought of all of this already and it may well be out of the budget anyway but just trying to think of things that may help you through this last bit of the taper until she is willing to add back in some RA meds after the testing. Thinking of you.

    • No, its a great idea Gillian. I have looked at a few, but I have so many food allergies, they can’t accomodate them all, I wound up with 3 meal choices. But that was a while ago, they have expanded considerably and there are more businesses doing it now. I will look again, it is a great idea. They are expensive, but the save on energy of shopping, plus hands that don’t do prep very well, probalby worth it. Have to check the prices too! bUt it will help get me through these next few weeks, for sure. Thanks Gillian x

  3. My heart breaks for you. What they’re asking you to do, is just blowing my mind. Asking you to endure months (not days or weeks), months of pain and inflammation and all the other stuff. I can see what their end point is, but if we can put a man on the moon, *surely* there is a better way to treat you rather than bringing you to the brink of death. But, they say it gets worse before it gets better. I dunno. All I know is that you are quite a woman to endure what you are enduring, with the tenacity and the huzpah you demonstrate. If I quit prednisone, my lungs would swell, and I’d be on a vent in less than 3 days, no doubt about it. You hang in there!! *gentle hug*

    • I’m sorry Melissa, that means you’re stuck with prednisone for life? It is an amazing drug, life saving. Damn shame about the side effects :(. Thanks for your kind words. I get through this stuff cos of the support I get from kind people like you. Best to you and take care Xx

  4. Neen Good lord! This is why I do not take pred unless it is a taper. I’m so sorry you have to go through all of this! I hope the immunologist can get to the bottom of this. At least you now have an ally and it sounds like you have someone you can call when your symptoms get worse.

    • Thanks Maria, I think that’s the important thing – she’s an ally. Prednisone is the best and worst drug ever…this is the price of the last few years of being functional. I just hope her theory comes to something! It feels good to have a doctor interested and on my side though. Refreshing..lol

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