Great article on what is a flare. And darned if I haven't read a 1,000 times to go slow.
But, I didn't. And am now in a mess as I want so to right myself enough to get on a plane to see my daughter this Sunday. I have been very sick with GCA?? and massive prednisone doses (40mgs. for 6 months) and she is lovingly telling me she feels like she doesn't have a Mom present anymore. Which is very true. I have gone from pillar to post trying to find out what I have. Was told to reduce prednisone asap from 40 mgs. to 0 in eight weeks.
I did that and within a week of 0mgs. was in excruciating pain. Was told I was not in adrenal insufficiency for 6 weeks. At week six I was considering "not one more day of this". It was that bad.
My Mom flew in and I was accepted to Mayo Clinic - apparently the best in the world. Many specialists and Rheumatologist said I have some key hallmarks of GCA, but my arteries all look fine (per Surgical Neurologist); and my markers are fine.
He did say he wanted me to immediately take 10 mgs of prednisone and slowly taper down. It took 3 weeks of this to get me driving and easily washing my hair again. I then tapered too quickly to 5mgs., then 4mgs. then woke up and my body was limp.
Mayo said take 10 mgs. for 4 days, then drop again to 5mgs. day 5.
Well, I got worse each of the subsequent 4 days, not better.
So, being the great direction-taker I am (not one bit, actually - it takes a terrible experience like this to get the seriousness of dead slow reduction into my thick head and over-ride the "I'm different" gene...), after the first day of 10 mgs. I still could not move much.
So Day 2 I took 15 mgs. Still could not move much.
Panicking I would never make the flight this Sunday to see my daughter, I took another five. "Came to" a bit in the late afternoon. Yesterday, Day 3, I was worse than ever. Took 20 mgs. Again, came to a bit in the late afternoon. Today, in panic, I took 25mgs.
I know enough that all needs to stop now. I will pay the price of this next weekend when it has time to accumulate. I happen to get every awful prednisone side effect possible - which is why when I feel better I race to get off the Rx.
So, now its Sunday. The worst energy and pain day yet. Took 20 mgs.
Okay, so now I have seven days to get on that plane and show up as a Mom. I know I can cancel and will cancel if needed. But, I want to fight like heck to be there for her.
So, if anyone of you could give me your best advice to potentially get "back to feeling so great I even scheduled this trip (reminder: just 7 weeks ago, I wanted to not ever wake up again I was in so much pain and could barely move).
I know I am rushing this ramp back up and god knows how I should ramp back down. But, right now, I don't have 30 days to ramp back up.
Thank you for any advice.
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kellykel
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I read you post through 2 or 3 times, and really don’t know where to start.
You cannot keep changing the dose like you have, whether that the doctor’s orders or your own decision - your body doesn’t know what’s going on, and steroids are powerful drugs - they are not sweeties (candies to you). A complete recipe for disaster. No wonder you don’t know whether you’re on your head or your heels.
If you took 20mg today then you need to stay on that dose to enable your body to acclimatise to it. Then you can reduce slowly, and that doesn’t mean in 5mg drops! or within a number of weeks. I don’t know what side effects you are getting from Pred, but it seems to me that they would be better than the constant yo-yoing that's going on at the moment.
I know some of the side effects are not good, I started at 80mg so I do know what I’m talking about. But you have to ride them out temporarily, they are manageable, and they will decrease.
Sorry but your Mayo Clinic doesn’t sound the best in the world to me - certainly not in the treatment of GCA nor PMR, nor in the reduction of steroids.
Understand the stern reply. Am quite feeling on my own with the prednisone and going only what direction given at the time as well as hearing bursts can be helpful.
Unfortunately, am feeling quite vulnerable so it was hard to hear.
Thought the burst was the right thing to do.
So now have dosed into 20 and will need to stay on that and dead slow taper from there?
Dorset Lady has given you the best advice. Forget about ramping up or ramping down! You need to treat your body more kindly so it can begin to heal. I also have heard that a "burst" in certain circumstances can be helpful, but have yet to learn of anyone for whom it actually worked for something like PMR/GCA. Take care. It does get better.
Sorry if you felt I was less than sympathic - I’m not. But you cannot take drugs in the way you have been - and I realise that’s not entirely your fault, but if you continue in that vein you will just do yourself more damage. Get yourself stable at 20mg and then reduce, not necessarily on the very slow taper, but certainly slower than the doctors had you doing.
Agreed about Dorset Lady. Yes, I know she would give me the best advice.
As far as the two tapers:
I was just told by Mayo to start 10 mgs and try to taper. That's what I was trying to do. Prior to that, I was told by my neuro and rheumatologist to taper as quickly as possible off the 40 mgs. a day so they could do a confirming temporal lobe biopsy once and for all. Funny, since what I have read there is nothing confirming at all about this biopsy.
I checked with the experts on this board and they said 5mgs a week should be fine. But, to go very slow after I get to 10mgs. Not exactly knowing what that meant at the time, I did what I could.
As for GCA, no one ever believed I had it because my markers were always normal. And I am young, which they say is not completely odd, but it would be extraordinary to have both low inflammation markers and be so young. In addition, my neurosurgeon said none of my arteries on MRIs showed any problem.
Soraya_PMR, thank you for your words. They were really lovely. Yes, abandoned. Perfect word. That meant a lot for me to hear. That is how I have felt for a year and a half of a nightmare I cannot begin to explain.
About GCA:
After 52 years of no health problems ever, I got very weak with horrid white spots up and down my throat. Slowly the throat healed, but the weakness and severe, unremitting vice-like head grip, neck and jaw pain as well as pain down my arms has been with me every waking hour for a year and a half now.
On the journey to discover what the pain was from, I was diagnosed with two brain aneurysms and had open brain surgery last July. The excruciating 24/7 head and jaw pain continued. I was told I had New Daily Persistent Headache and tried every abortive and headache medicine out there. Nothing helped. I lived in severe pain whenever I was conscious for 8 months.
At the end of the my rope, I finally met a neurologist who would give me prednisone as it was the only thing that helped. I had experienced its help when they gave it to me after brain surgery for a taper. After two months, no doctor would give me prednisone. I would then literally beg for prednisone 'tapers' at the emergency room. They were always 40 mgs start dose with a ten day stop to 0mg. Starting at 40 and going to 0 in ten days were all I ever knew about this drug at the time.
No rheumatologist or neurologist I saw would give me prednisone or any pain help. I just heard: I'm sorry, we have headache medicines but that is all we can do for you.
It was like a death sentence hearing that.
So, when I showed up at the neuro who would he said what would you like to start with and I said 40 mgs. As you can see from above, my only experience of pain relief was at the 40. And so it went. I was never told to taper. And if I personally tried - quite slowly I might add...2.5 mgs. every 3 weeks, the pain was too hard.
So I was locked at 40. It never took away the pain in the least. It just made the pain bearable. But then I only slept 3 hours a night, had terrible pressure bloating every afternoon through the evening, thrush, shaking, buzzing, you name it. I got much good advice on this board for those.
Finally, after 6+ months of that, my neuro said I was not responding as a GCA patient was and should go off of it and have a biopsy done. He knew I needed to be off the prednisone completely for at least 4 months to have a good shot at a positive biopsy. So, I tapered quickly and had no idea I was in adrenal failure. And no doctor said I was. So I laid in pain on the couch and couldn't move.
One again, feeling like I could not do another day of life.
Mom flew in and Mayo put me back on 10 mgs, said to taper. Apparently every test known to man was done and everyone concluded I don't have GCA.
So I finally had 4 weeks of low side effects, lowered pain and a resemblance of a life. I thought I was good, as I have not had more than one good day in 1.5 years. I thought I was finally on a roll.
"He knew I needed to be off the prednisone completely for at least 4 months to have a good shot at a positive biopsy"
He may be from the Mayo and may be an acclaimed expert - after 6 months on 40mg pred he isn't going to get a meaningful result from the TAB. Except in the very unlikely event it is positive. If it is negative he cannot know what is was before. Nor could anyone else.
I think what the Mayo have done is put you onto a dose of pred that is effectively an adrenal insufficiency replacement dose - 10mg should be plenty for that. And then you are to reduce slowly to hopefully allow your adrenal glands to wake up again and function.
However, otherwise your posts are so confused I'm really not clear what you are saying. In one sentence you say you still had pain with 40mg pred - in another you seem to say you are on 10mg and feel better. You can't have it both ways.
But it all needs sorting out under the close supervision of a doctor. Not on a forum. And not involving a plane journey to anywhere.
Hi kellykel, I think DorsetLady is right about you sticking with a nice steady 20 mgs and let your body and mind settle. I am positive that if she said all that to you in person you'd just feel reassured and cared about. Not told off.
It always worries me when I hear people saying that they want to take more Pred to be something for somebody else or to support them. I think that's why some of us got sick in the first place being too much the " carer" and neglecting our own needs. Of course you are still your daughter's mom, a mom with an illness that you get better from. You might be a tired mom or even a snappy mom, but you are her mom and she wouldn't swap you for anyone. GCA and PMR do not make us a whole other person. Just be yourself, faults and all and have a lovely visit. Make sure they know that you will need rest and quiet some of the time.
Phew, that is quite a rollercoaster! If responding well, tapering off steroids takes at least two years and done very very slowly. Leave it to a rheumatologist. I am now (after a year of reducing) at 5mg daily. Reducing by 1mg every month. Blood tests every two months for six months, every three months for another six months. During that time, there are regular checkups with the rheumatologist, he knows the signs, he knows what other issues can emerge.
Now breathe! Poor you. I can read your stress and panic between each line. During these times we can forget some basics. GCA and PMR feed on stress. It will make you feel so much worse and muddy the waters too. Some things are so big that we have to hand them over. If we could make ourselves be better by the power of our will, or with determination then we wouldn't need a forum like this.
When you are a Mum you don't just get demoted through ill health. Your daughter won't love you less. It may give her the opportunity to practise everything you have taught her over the years and care for you. You cannot help things you can't help. You are ill and have to put you first in order to be in a position to help anyone else. Even your children. Sobering but true. Perhaps it will be easier to to make the decision that you won't be on that plane rather than torture yourself for the next week or so. Then you can concentrate on your health for now. Take care xx💐
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