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Thread: Weaning pred question

  1. #11
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    Thanks Sangye, wow 6 years of feeling like this - ugggghhhhh!!!! If I could give you a big hug right now, it would be one of those awkward ones where you'd be thinking "OK, is she ever going to let go of me?"

    I feel sleepy all the time, but I can't sleep because despite my body being a lump of junk, my mind is constantly going and wont let me sleep. I wake up tired. All the time. I took some morphine last night because not only does it get rid of the aches and pains, but also helps me have a sound sleep, but I only take that very occasionally as I don't want that to be my 'go to' drug for obvious reasons. I have enough crap in my body and am not interested in adding an addiction into the mix.

    Like I said, my brain has been really quite good throughout with the odd blip but it usually passes very quickly and they are very few and far between. Yesterday I got whallopped by my brain. Mostly because I had in my mind that around 5mg when the adrenals start kicking in things might improve but then I read that a girl who's going through the same at 2.5mg. Then I did the math and got so bummed about how long I could potentially be feeling like this. I don't feel like I can function as a normal person, something I've been kinda feeling closer to in the past few months.

    I'll see how I feel in the next few days and might go up a bit. It's just something I wasn't expecting to be this drastic. I knew that it would be tough, but I thought I'm tougher than it, but apparently I'm not as tough as I thought I was - ha ha. In fact I'm feeling quite whiny right now. Thanks for letting me wa wa on here and with your invaluable info. I'm gonna go look for a wa-mbulance... ha ha. Going out to get a blood test right now to make sure it has nothing to do with my liver. Will know tomorrow.

    Thanks a ton.
    m

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    Marta,I’m sorry you are having a tough week, but this may make you smile.

    Iactually went thru the self-checkout line at the grocery the other day, with aton of groceries that cost over $100. After I gave the cashier my $1.00 off coupon, I put my bags in the cartand proceeded to my car…without paying. No one stopped me. I didn’trealize what happened until almost 3 hours later. I headed back to the store to fess up and pay,praying that my picture was plastered on the door as wanted. Thankfully it wasn’t, but the same cashierwas sitting on a bench outside and I instantly thought I must have got herfired. She was just on a break and whenI said “I was up here earlier… and she replied sternly “Yes, I remember you”.

    Anyway,I explained I was going thru some stuff and my brain wasn’t as sharp as it usedto be. She was scared she would get introuble, so she voided the whole transaction. Cliff notes version is that I didn’t have to pay for the groceries but Igave her the only cash I had ($20) for the pain and suffering I must havecaused. She was now afraid to go back inand ask how to re-enter without all my groceries.
    Katrina
    "Never go to a doctor whose office plants have died." - Erma Bombeck

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    When I was tapering, I would feel like I got hit by a truck for a couple days, but within about 5 days, I felt like I adjusted and kinda normal (if you don't count the Pred side effects)
    I think I remember it being worse for me when I was between 40mg and 10mg, every month I would go down 5-10mg and it was horrible for a couple days. I felt like I adjusted quicker when I was tapering under 10mg.
    Nicole

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    I found for me when tapering under ten it seemed to take about 10-15 days most of time to sort of normalize after a drop. I would stay there another week before trying another micro taper. I used 1/4 mg drops to try minimize the enormous fatigue and this seemed to work well most of the time. Rather slow but helped me feel a lot better. I couldn't handle the 1/2 mg drops very well. I would also postpone a taper a few days if there was some high stress event coming up, like dental work or heavy medical trip where I couldn't afford the fatigue. I got down to 5 mg this way where i have remained for several months per my doctors advice for now. I also started my taper in late spring of 2010 from 70 mg. The early drops by ten a month seemed rather easy at first till you flare and then have to back up. I just talked with another GPAer at lunch who has Wegs lite but had a flare and got backed up to 40 mg again for another several month taper to try get back down to 10 again and will be getting RTX next week. That to me is the real discouraging part of the whole business of trying to taper pred down and off if possible.

  5. #15
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    Ha ha Katrina, I so get that brain fog feeling. I've been forgetting words halfway through a sentence lately too. I am used to feeling on top of my game, even when I was sicker than sick, I still had my marbles intact.... this last month is questionable, and quite frustrating. I just feel like a half of me mentally and a triple me physically - like I'm carrying three of me around.

    Nicole, I have felt the same throughout. When I go down if I feel anything at all, it's only been noticable for a couple days then it goes away. But I have to say that generally I haven't felt much at all during the drops, but this seems to be hanging on for a while. I have also been fighting a low grade cold or something since right after PJ Day, so almost a month - yeah, a month tomorrow - so that might have some bearing on the situation. I just went and got a blood test, so I'll go in tomorrow and get the results and see if anything is rearing it's ugly head, or if my liver is acting up. Ahhhh, how to become a doctor/specialist in a rare disease without going to med school. This is it.

    This too shall pass, but I wish it would pass with less of a drag. What a bunch of fighters on this forum. A friend gave me a fridge magnet this Christmas - and she's an ultra runner for The North Face, the stuff she endures is insane - and on the magnet it says " I have met my hero and she is me". Coming from her this meant a ton, but it's funny because I see this as a long run and having to break through those few walls you have to break through on a long run, and I am not feeling very hero like these days, but I know one thing for sure, all of you guys are and this yucky thing brings out the best and toughest in us all. So here's to the super race of Weggie survivors.

  6. #16
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    Only you know for sure Marta. But with aching and fatigue like this it makes one wonder if it is just a cold or Wegs sneaking in again. If it were me I would check my labs just to make sure.
    Phil Berggren, dx 2003

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    Marta, if it is any consolation every time I read what you are upto I get tired and have to go and have a rest!

    Jim
    You give but little when you give of your possessions. It is when you give of yourself that you truly give. Kahil Gibran

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    Quote Originally Posted by drz View Post
    I found for me when tapering under ten it seemed to take about 10-15 days most of time to sort of normalize after a drop. I would stay there another week before trying another micro taper. I used 1/4 mg drops to try minimize the enormous fatigue and this seemed to work well most of the time. Rather slow but helped me feel a lot better. I couldn't handle the 1/2 mg drops very well. I would also postpone a taper a few days if there was some high stress event coming up, like dental work or heavy medical trip where I couldn't afford the fatigue. I got down to 5 mg this way where i have remained for several months per my doctors advice for now. I also started my taper in late spring of 2010 from 70 mg. The early drops by ten a month seemed rather easy at first till you flare and then have to back up. I just talked with another GPAer at lunch who has Wegs lite but had a flare and got backed up to 40 mg again for another several month taper to try get back down to 10 again and will be getting RTX next week. That to me is the real discouraging part of the whole business of trying to taper pred down and off if possible.
    No kidding the whole business of trying to taper and then being bumped up again to crazy levels is a huge bummer. I know that I will inevitably be on the high doses again at some point in my life, but I'd like to get off it before it happens again. Plus it's so hard to get off the stuff that it feels like a bully has come on the beach and stomped your sandcastle when you've been working on it all morning, except for our sandcastles take years to build. I'll see what my bloodwork says and make an appointment with the GP and see if I can get steroid drops as per your experience.

    I know that when you're on a back-country hike and you have been hiking all day with a 50lb pack on, and you see the peak where you're going to stay the night, the trick to survival is to 'never think you're almost there' because inevitably something will happen where you might not be almost there. I had in my head that I was almost there, and now I got knocked off my high horse. Failed to follow my own advice. Oh well, live and learn. Over and over again - ha ha.

  9. #19
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    Quote Originally Posted by Dryhill View Post
    Marta, if it is any consolation every time I read what you are upto I get tired and have to go and have a rest!

    Jim
    Ha ha ha - that's too funny Jim. Well, now I'm tired too -
    I know. I need to mellow out, but I feel like time is limited and I want to make hay while the sun shines, and it was shining before this. I hope I put a good dent in it, and that PJ day can take on a life of it's own. I have ideas too that I think would bring us miles ahead - not just us Weggies but all of us who have to fight for a diagnosis with autoimmune disease. I just spoke with my doc - before the hammer hit me on the head - and asked what the chances are of a grad student doing a study of the numbers in Canada for all of the autoimmune diseases - she said it would be a difficult task but she likes the idea and would think about how to get it done with one of her students. I have also been thinking about who I can talk to so that there is a testing protocol that people with a difficult diagnosis can undergo to eliminate AI disease. Start with a screen for the more common ones and as you pass each one go to more rare screens, but wouldn't it be great to have a protocol like that and so many people can avoid being made to feel like crazy hypochondriacs by a medical profession that also is in the dark about AI disease.

    Incidentally, she loves what has happened with the survey, and wants to do an official one this summer. She's hired a grad student to help manage it, and wants all of us Weggies who answered the last one to go in again and answer the questions that a few doctors will put together. I can't imagine ever getting the numbers we got on the survey I have, but we can try. On my survey there are almost 700 Weggie replies. WOW!!! If we assume that WG hits one in 40K then it's a representation of 28,000,000 people, if we assume that it's 30K then it's 21,000,000. Again, WOW!!!

  10. #20
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    I seriously doubt that Wegs is one in 40K. It is more like one in 5K.
    Phil Berggren, dx 2003

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