The Monday Rheumatology/Immunology report Nov 28 2016

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It’s the ‘Monday’ report.  I haven’t written up what rheumy said last week. Or rather, I have mostly, just haven’t posted it.  I’ll get there.  I’m trying to write every day, get disciplined and get that book I have been writing forever DONE!

I saw my GP this morning.  Having now dropped to 12.5mg of prednisone, I have gone crashing into full body megaflare, as you do.  Sleepless nights are now the norm.  Painful days.  Too much oxycodone…the oxycodone paradox.

img_2938There is a sweet spot, where a lower dose of oxycodone takes the edge of the pain well enough so that I can walk, I can do a light gym workout, I get 2-6 functional hours a day, depending on how much prednisone I am taking, and if I’m on a dmard/bdmard that is helping. That’s where I was with Xeljanz, and it was most definitely helping. Perhaps more than I realised, now that it’s gone.

Now, at 12.5mg of prednisone, without the Xeljanz, the amount of oxycodone I would need to take enough pain away to actually move gives me a whole truckload of nausea and itching, and dopiness and altogether different kind of dizziness.  Who knew there were so many kinds of dizziness/balance problems?

I am taking the higher dose of oxycodone, because despite the unpleasant side effects, the pain is worse. Far worse.  The pain is quite terrible now, left untreated it would be unbearable (for me).  I don’t often cry because of physical pain, I’m not much of a crier, full stop.  But without pain relief I would be in the foetal position crying.  Actually, no I wouldn’t.  The foetal position would be impossible with this many inflamed joints. I would be lying flat on my back, staring at the ceiling.

That’s how I spend most of my nights.  I can’t sleep on either side, haven’t been able to in years. Can’t lie on my hips or shoulders.  Just flat on my back.  Not my preferred sleeping position, but I don’t get to choose.

My GP and I talked about Valium.  It helps with the inevitable muscle spasms, and it helps me sleep.  But I decided I don’t want to take it.  I want to try and get by without it.  I feel with this much oxycodone, throwing Valium on top is starting to get risky.  I’m not drinking, obviously, and I realise that I DO drink for pain relief. When the pain is bad, I want a glass or two of red.  And it does help.  Just gives the oxycodone that little bit extra boost, and helps me sleep.

But I can’t do that now.  Silly liver.  But again, the amount of oxycodone I am taking right now, even though I have taken this much regularly before, is a red flag.  I need to get it lower, and that means spending more time on the couch.  If I don’t move, pain levels are a 7.  If I DO move, they are an 8.

Living at 8s is very hard.

I’m hoping that things will even out over the next few days, after the drop in prednisone.  I’m also going to start taking Naprosyn again, in the hopes that it will allow me to lower my oxycodone dose.  It has been very helpful in the past, especially for lower back pain.  It DOES mean I need to eat breakfast.  Can’t take it on an empty stomach. So I need to eat, and keep food down.

I had to stop taking Naprosyn because it was contributing to my high blood pressure and cardiac issues.  But those are on the back burner now. Life is a constant reassessment of which medication has the best cost/benefit ratio.  Cost not meaning financial, cost being cost to my physical health in side effects.  Right now, putting Naprosyn back in the mix seems like the best plan.

My Eosinphilic Esophagitis is giving me grief. Swallowing is tough, and with all the crazy going on, a few allergens have snuck into my diet.  Meat is getting caught in my throat.  I have no appetite still, nothing appeals.  I’m guessing with the massive pollen count that confirms my immunologist’s assumption that my EoE also includes environmental triggers, pollens, seeds, airborne allergens. Impossible to avoid, impossible to treat.  As I’ve dropped the prednisone, my throat has closed more and more.  It’s unpleasant.  But there isn’t another treatment.  I just have to be more strict with the diet, but frankly it’s easier to just not eat much.

The other thing that is getting substantially worse as I taper prednisone is my hearing.  My GP feels there is an autoimmune process going on with my hearing, balance and tinnitus.

“Autoimmune inner ear disease (AIED) is a syndrome of progressive hearing loss and/or dizziness that is caused by antibodies or immune cells which are attacking the inner ear. In most cases, there is reduction of hearing accompanied by tinnitus (ringing, hissing, roaring) which occurs over a few months.”

Sounds about right.  There is nothing I can do about that either. Autoimmunity is just attacking wherever it sees fit, any part of my body is fair game, and prednisone is my only band-aid.

AIED is also quite rare, and my rheumatologist doesn’t really want to hear about it, and the Ear, Nose and Throat guy didn’t even examine me, just signed the form to say I needed a hearing aid.  No one is interested.  Like everything else, if I can find a medication that lowers the inflammation in my body, my hearing will improve.  But there’s a timeline. And damage done, is damage done.  I may lose my hearing, slowly but surely.  That doesn’t please me…I can’t imagine being completely deaf.  To never listen to music again would be nothing short of tragic for me.  To never hear my kid’s voices…

But that’s all the time I am giving to that thought. 

I can’t afford to worry about things that haven’t happened and may never happen.  I have enough ‘current issues’ to contend with.  I will file it away until the next rheumatology appointment and add it to the document I am creating for my new rheumatologist.  My GP is calling her today to try and get me seen sooner.  Fingers crossed.

We also discussed my daughter.  She has been getting more and more aches and pains.  I think it’s because of her hypermobility, but her joints crack and grind, and they hurt daily now.  And for the past two days she has had what can only be costochondritis.  A crushing feeling in her ribs.  She says its feels like steel bands getting tighter and tighter and making it hard to breathe. But her lungs are clear.  She is taking nurofen daily, and on my GPs advice, I’m going to add fish oil supplements.  If she does have a form of juvenile arthritis, that might help. And we watch and wait.  I’m not sure how long to wait though.  I thought my daughter’s pain tolerance was low and she was making a big deal out of nothing.  Two years ago she was quite the drama queen. But two weeks ago she took a hard hit to her hand, we thought it was broken, and even though it isn’t, it has been very painful. And she has managed that pain very well. It has made me realise that she is handling daily pain, and I underestimated that.  So I will need to look into paediatric rheumatologists, because I know there are none here in Canberra.  In the new year I will get a full work up done, sooner if the costo keeps up.

And I think that’s it.  I see Dr Mike the super psych tomorrow.  He is telling me I don’t need him anymore.  He may be right, but I don’t feel ready to let him go.  I like having him there.  But he is right, I am coping well, I am not depressed.  And all our sessions follow a similar pattern.

I’m in pain. I’m sick. I’m losing more function by the day and there is no cure for my disease(s). I’m alone, raising two teenagers.  One has Asperger’s.  One has Anxiety. Both have hypermobility and joint pain.  It’s complicated…

There isn’t really a psychological answer to any of that.  It’s just the way it is.  For the most part, I just accept it.  And sometimes I get down about it, and I do cry.  But then I bounce back. I have good coping skills.  Dr Mike can’t wave a magic want and cure me. Or heal me.  Or put humpty back together.  But I still feel I need the vent session that he provides.  I can see that me just covering the same ground every month is really a waste of his skills.  And it IS his job to get me to manage on my own.  That’s what all good therapists should be aiming for.  So I guess he’s right, its passed time.

And that really is it. Time I tackled my ‘to do’ list.  Which means making appointments, calling my son’s school because he is ‘sick’ in bed again, and ordering some Christmas presents on line.  Things I can do from the couch.  I hope to get off the couch today, but I’m not sure that’ll be doable.  Right now I have to recover from the early morning GP appointment.

We put our Christmas tree up yesterday.  I supervised from the couch, and the kids did the decorating.  They had fun and did a great job.  It was happy, light family time.  Just looking at the tree makes me happy.

2 COMMENTS

  1. I agree with you about the valium. That stuff makes me a mess. It does put me to sleep, but the headache when I wake up makes make me feel awful. It is not worth the trouble of taking it.

    I wish you the very best. I believe better days will surely come soon.

  2. Thanks Rick. I believe so too. I’m just impatient…I find it hard to understand why, in a country that continually claims to have the best health system in the world, everything has to take so long!

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