Prednisone Taper – Oct 2016 8mg week 4

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I’m spending most of every day sleeping. Not by choice. I hate it. I am so tired I can’t stay awake.  I get dizzy when I stand up. I sit down. Lie down.  And I fall asleep.  And I stay asleep for hours. It’s not a half hour doze, its five hours of deep sleep.  And when I wake up, I’m still tired.

This has been going on for about ten days now.  And its every day. My whole life is sleeping.  I literally sleep 22 hours out of 24.

The odd thing is the rheumatoid arthritis isn’t that bad. Pain is well controlled by oxycodone. I’m guessing pain levels are lower because I’m not DOING anything.

My head aches. The icepick through the temple headache.  As well as a constant frontal ache. Not intense, but unpleasant.  I don’t feel it when I sleep.

I have no appetite. It’s hard to eat.  I’m eating apples and oranges mostly. And pumpkin.

I feel like I have permanent gastro, nausea, diarreah, stomach pain.  I’m trying to drink lots of water to stay hydrated.  Even water is not easy to keep down.

My hearing is much worse.  The hearing aid isn’t helping at all.  My ears feel full of pressure, and the tinnitus is driving me crazy. Constant high pitched ringing.  Mostly in my left ear, but the right as well sometimes.

The numb limbs have returned.  On Saturday I woke up numb all down the right side.  It went away.

Chest pain continues, tachycardia is reducing, but still happening several times a day.

Urinary problems have returned.  It feels like no part of my body works anymore.  I feel weak as a kitten, my muscles ache and my body is made of lead.

I haven’t been to gym in four weeks now I think.  The most I have done was a 700 metre walk two days ago.  And that wiped me out.  I had to drive my kids around yesterday, about an hour driving total.  That wiped me out.  Today I have done nothing.  I can’t do anything. I can’t think clearly.  I can’t remember anything.  I had a conversation with my mother, and forgot we’d already had that conversation.

My vision is blurred. Then it clears up again.

This is not living.

I need more prednisone.

All of these symptoms are symptoms of adrenal insufficiency.

Doctors won’t listen, they don’t believe me. They think i’m a big baby.  There is no one to advocate for me.  Explain to them that I am not a sook, that I don’t lie down easily.  So they think I’m just exaggerating and attention seeking.

And they say I shouldn’t’ need that much prednisone. Fine, I get that. 7.5mg of prednisone is the replacement dose if your adrenals are not working at all. I can’t function at 8mg.  That doesn’t make sense to doctors, because they are all about lab numberrs and ‘the middle of the range’.  But not everyone is ‘average’.  In every bell curve there are the people out on the edges.  Clearly I’m one of those people.  I need more thyroid replacement hormone than ‘normal’ to feel Ok.  It seems reasonable to me that I need more cortisol than normal to function as well.

Either way I don’t care. I need the prednisone. I can’t live this way.  I’m not living.  I can’t do anything on my own.  I can’t function.  And yes, I am depressed. I’ve had enough of this.  Friday is too far away.  I don’t care.

9 COMMENTS

  1. Bless your heart! And I totally understand about the doctors. I’m so put out with mine at the moment, I’m seriously considering changing doctors….this late in the game. And I’ve been going to him for 23 years. He and I had gotten on top of the lung flare very well, and the wek of 17 October was glorious. Best week I’ve had in months. Then Saturday came, and the lung re-swelled, then cracked two ribs. My doctor was out of town the next morning when I called about getting an xray just to verify what I suspected. Doctor-on-call had his flunkie call me (6 hours later, mind you) and tell me that since this was an on-going situation my doctor was already monitoring, he refused to see me, and told me to take asprin for the pain. Cue *deer in head-lights-crickets-chirping” look. So I had to go to a walk-in clinic for the xray, and those wonderful people (its amazing how nice and accommodating medical people can be when you tell them up front you don’t need pain meds), really, they are very nice, found the two fractured ribs. SO…I called the office manager at my doctors office, and let them have it. That was Wednesday, 26 October. My doctor was due back in his office on the 27th. And STILL I have heard not a mumbling word from them. No “well-check” phone call, nothing. So compassionate. I ‘m considering interviewing for a new GP, I want one that has an auto-immune disease.

    • After 23 years THAT’s the treatment you get Melissa? I’m appalled. And so sorry. Sorry for the slow response, but I do hope they have redeemed themselves. Or otherwise, you’re right. Time to find someone else. And yes, a doctor with personal experience of serious autoimmune disease would be a good start, you would think! I hope your ribs are healing, and your lungs are also improved. That’s an awful lot to deal with, made worse by disgusting medical treatment. Shaking my head.

  2. I know how your feeling, I have been off of MTX now for 3 weeks and I get it back this very evening. I also get my NSAIDs back tomorrow. I am so thrilled. I cannot wait. But on top of it, I get Rituxan on Thursday. I feel like I won three rounds of blackJack using one $5.00 bet.

    I hope you get to your prednisone sooner than later. Hang on it is coming.

    • Yay! I hope your meds have kicked in Rick, and you are feeling much better. I’m really interested in Rituxan…I have one more crack at biologicals, and I think that one is the one for me. Let me know how you’re finding it, I really hope you’re doing well! All the best!!

  3. My heart hurts for you. It is the most frustrating and disheartening situation when your physician doesn’t take you seriously and brushes you off as an attention/medication seeker. It is your doctors duty to listen to you and take you seriously. Best advice, find another if you can. At the same time, that is another frustratingly stressful situation. Don’t be afraid, don’t feel that you are alone. YOU ARE NOT!!!!!! Keep your head and your spirit up. It takes Courage to face this disease.

    • Thank you Jamie. I needed that today. I do feel so alone sometimes, but then I realise there are so many of us, dealing with the same things, and there are so many doctors with a lot to learn. We keep fighting, together, and we get through! Thanks for your warm thoughts…they really do help. I hope you’re doing OK, best to you.

  4. You are not alone. It takes courage to handle and live with this disease. Don’t give you on yourself. Give up on a physician if you have to, it’s their duty to listen to you and take you seriously. Take charge of your situation and find a better physician if you can. Keep your head and spirits up.

    Sending you all kinds of love and kind thoughts as you find the courage to pull through.

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