Pred Uglies

[marta]

Awesome ❤
Y o u
a r e
b e a u t i f u l , marta, no matter what.
Thanks for sharing.

Thanks Alysia,
YOU are beautiful.
We all are beautiful.
We just forget sometimes when we look at that massive person looking back at us in the mirror and that's why I wanted to post this.
It's hard to see the true Self through a layer of pred flesh sometimes, but it's always there.
It's hard to see the soul through eyes that have been pushed shut together by pred cheeks, but that sparkle always lives.

I told my doc I was taking pictures when I first got on the pred last year. I told her I wanted to document the process because the first time was so shocking I refused to acknowledge the mirror and refused to have pictures taken of me. Now I knew the outcome and wanted to give others hope where sometimes it feels like a non-existent entity. She thought I was nuts to take photos of it. I think she might be right, but that's never stopped me before. Ha ha ha. Nuts is my middle name.

Lots of love to you my friend.

[mishb]

Thank you Marta

Nuts may be your middle name, but gorgeous is your first name.

You always know the right words to say, at the right times.

I also try not to have photo's taken of me......... until recently.
I also decided not to colour my hair anymore. It's time to embrace me, the real me. greying hair, fine lines, and all.
I'm in my 50's now and I have earned these trophies.
In 2010 they gave me 3 to 5 years, we know that's all bull and that if the treatment is correct, we can go a lot longer.
I said that I wanted to get to 50, well I have done that plus more, which is why I have now decided to embrace me.

Maybe Nuts is my middle name too

Love you long time

[Alysia]

I embrace you too, Michelle, marta and debra ❤
(is it a girl's thread ? )

marta, I will be grateful to read about your techniques of weaning pred. I am stuck on 5mg many years now (at times it goes up to 30-10mg).
It is not that I am that brave to wean the pred, but now I am also on another steroid, budezon 6mg for my microscopic colitis, and will prob be on it for life, so maybe I can wean the pred a bit. Maybe. A bit.

Thank you for this beautiful thread.

[marta]

I embrace you too, Michelle, marta and debra ❤
(is it a girl's thread ? )

marta, I will be grateful to read about your techniques of weaning pred. I am stuck on 5mg many years now (at times it goes up to 30-10mg).
It is not that I am that brave to wean the pred, but now I am also on another steroid, budezon 6mg for my microscopic colitis, and will prob be on it for life, so maybe I can wean the pred a bit. Maybe. A bit.

Thank you for this beautiful thread.

Pred wean.
The grossest part of getting back to normal.
I dread going on pred not only because of the lack of sleep, and how it makes you look but also because of the wean.

A little context: As you probably know, our adrenal glands normally make between 9 and 11mg of corticosteroids per day. Once we start a pred regime, the adrenal glands are like "well we don't have to work any more, let's take a vacation" so they shut down. Once they shut down they start to atrophy. The wean is important because if you go too fast, you can trigger a flare, or you could go into adrenal crisis, and that's a life threat. What we're doing is not only waking up the adrenals so they can produce but also pulling them out of a state of atrophy. A significant task to say the least.

So this is my take on it.

We wean in big jumps (5mg) per week or couple of weeks until you get down to 20mg.

Then from 20mg down I was dropping about 2.5mg per week or couple of weeks, early on I even went a month sometimes between drops. I always play it by ear and don't put any concrete dates into plan judging the wean based on how I feel and if I drop and feel super gross, I go back up to the previous dosage until I feel good, then drop a smaller amount and see how that works. Sometimes I've done that a few times.

Once I get to about 12mg, I start to drop 1mg at a time every 2-3 weeks. That way I minimize the pain. It always hurts. I have figured out the nuances between WG symptoms, pred wean symptoms, and cold/flu symptoms. They're very similar but each has a different underlying flavour. I think the only way to figure that out is with experience. Here I also do the back and forth if needed.

Below 8mg I found to be the worst. Between 8mg and 5mg in my experience sucked the most. I think that's because now you're operating below what your body needs (9mg minimum-ish) but your adrenals aren't working yet. It's that deficit that starts to wake them up, and it's a yuck fest. I found by about 5mg, it starts to even out. Below 8mg, I do 1/2 mg drop, and I don't cut my pills, I just alternate dosages to average out 0.5mg drop. So one day I'll do 8mg and the next day 7mg. Go like that for a while until you feel good physically, then you can even do one day 8mg, and two days at 7mg, and then keep increasing the 7mg days in a row and decreasing the 8mg days. Eventually you'll find yourself at 7mg. And again, I would do this at your own pace to try and make it as painless as humanly possible.

You're at 5mg and want to drop, try taking 4mg one day a week. Then take 4mg two days a week and work your way down. If you've been on it for this long, don't beat yourself up for taking a long time. Take your time. Your body is obviously producing it's own corticosteroids if you're at 5mg, or maybe it just needs to be pushed just a little more to get those bad boys running.

You can give yourself a half a year or more if you like to get off it, and just slow and steady... just keep tricking it by decreasing the dose ever so slightly from once a week, to twice a week, to three and eventually you'll be at 4mg. Be gentle with yourself. Both physically and psychologically. We tend to be our own worst critics sometimes, so by loving yourself and knowing that what is meant to be will be, eliminates that need for control and the associated stress that comes with wanting to control uncontrollable situations.

I hope this helps.

I send you lots of love and strength and healing jujus.
Peace.

P.S. This summer we had lots of smoke from wildfires in British Columbia and Washington State, and I found that the smoke was triggering my symptoms. I put myself on 10mg of pred for 4 days (twice this summer) and upped my Imuran by 50mg. I didn't consult with my docs, but it helped, and since it was only four days at a stretch, I could just stop it and carry on. Just food for thought.

[Pete]

Thanks, Marta!! This looks like a good way to get off pred. I'be been at 5 mg for most of three years and want to try to get off again.

[marta]

Thanks, Marta!! This looks like a good way to get off pred. I'be been at 5 mg for most of three years and want to try to get off again.

I hope it works for you Pete.

The first go around it took me several years to get off the pred completely. This time around it was less than a year using this technique. Like I said though, there is a level of grossness there, but it really does have a distinct 'predness' to it. It's hard to describe, but I always know it's pred wean symptoms when there is a deep, dull pressure in my ears, throat and Eustachian tubes. Everything else aches, but the ear pressure thing always gives me some comfort that it's the wean and not the WG dog coming back.

I don't know if that makes any sense. Regardless, I hope it works. And if you've already resigned to being on pred indefinitely, taking your time is no big whoop. So take your time.

Go slow and trick it into submission, ha ha.

I was keeping track on this go around and I'll attach the graphs from my wean (I know, I'm a total geek.)
IMG_7555.jpg IMG_7556.jpg

The graph size changes based on relativity, so the second (2017) looks like I'm taking more when in fact it starts at 2mg and goes to 0mg and the first (2016) starts at 20mg up to 50mg (with a couple of 100mg during RTX) and works down to 2mg. Super geek.

[Pete]

Thanks, Marta!!

I'm seeing Dr Villa Forte next Friday (and getting a dose of rtx). I plan to discuss a slooooow taper with her. Probably drop 0.5 mg/month or six weeks. Since my adrenals are making some cortisol, I'm really hoping they'll revive to full capacity.

[Susan55]

I am trying to understand how you go down to say 4mg when the pills come in 5 mg dose? Something I am not understanding or miss reading. I started at 50 mg Sept 12 and down to 30 for the last week and now starting today down from 30 to 20. I think this is just too fast, but this is the order's by Rheumy and then in 2 weeks I go down to 10 mg and from there I don't know the dose.
I now understand my my mid back hurts so bad

[marta]

I am trying to understand how you go down to say 4mg when the pills come in 5 mg dose? Something I am not understanding or miss reading. I started at 50 mg Sept 12 and down to 30 for the last week and now starting today down from 30 to 20. I think this is just too fast, but this is the order's by Rheumy and then in 2 weeks I go down to 10 mg and from there I don't know the dose.
I now understand my my mid back hurts so bad

Hey Sue,

you're dropping super quick by the sounds of it.
I know you're an old pro at pred, but this is a different animal (WG) so be very aware of how you're feeling and adjust accordingly.
I remember reading many discussions in my early days on here about people weaning too fast and setting off a flare.
The problem with setting off a flare is that it's been shown that with each subsequent flare, it's harder for the meds to work and it takes more medication to do the same job as before. I personally do anything to avoid flares like the plague. So if weaning the pred a little slower will potentially decrease the chance of triggering a flare with the wean, do it.

Bellow 20, you should be dropping in much smaller increments. My first go I flared at 17.5mg. It also coincided with me getting a flu shot (which is when I actually made the connection of my trigger, but that's a different topic) but just worth knowing.

As for the smaller increments. Ask your doc to give you prescription for 1mg pred. You will certainly need it below 10mg, and also once you get bellow 20mg it helps with managing the dose and wean much better. Call me at home if you wanna chat about it.

If something is hurting bad, I would recommend going back to the last dose for a bit until it stops, then do a much smaller drop and see how you feel with that. Doctors really like to tell us how to wean fast, but I'm certain than none of them (or very few if any) have been on high doses of steroids for extended periods of time. That's why my doc is so awesome. She really leaves it up to my discretion on the speed of the wean.

[Susan55]

Hey Sue,

you're dropping super quick by the sounds of it.
I know you're an old pro at pred, but this is a different animal (WG) so be very aware of how you're feeling and adjust accordingly.
I remember reading many discussions in my early days on here about people weaning too fast and setting off a flare.
The problem with setting off a flare is that it's been shown that with each subsequent flare, it's harder for the meds to work and it takes more medication to do the same job as before. I personally do anything to avoid flares like the plague. So if weaning the pred a little slower will potentially decrease the chance of triggering a flare with the wean, do it.

Bellow 20, you should be dropping in much smaller increments. My first go I flared at 17.5mg. It also coincided with me getting a flu shot (which is when I actually made the connection of my trigger, but that's a different topic) but just worth knowing.

As for the smaller increments. Ask your doc to give you prescription for 1mg pred. You will certainly need it below 10mg, and also once you get bellow 20mg it helps with managing the dose and wean much better. Call me at home if you wanna chat about it.

If something is hurting bad, I would recommend going back to the last dose for a bit until it stops, then do a much smaller drop and see how you feel with that. Doctors really like to tell us how to wean fast, but I'm certain than none of them (or very few if any) have been on high doses of steroids for extended periods of time. That's why my doc is so awesome. She really leaves it up to my discretion on the speed of the wean.

Hi Marta
I totally agree with you and I've been thinking to my self wow she is dropping the dose way to quickly. When I would take it for COPD, it would go down by 5mg etc etc.
And I have to wait to more weeks to see her . I also don't like how I have to start treatment and wait ONE month to go back to see her! I tried calling her office to go in last week and they said "sorry were booking for the new year now" . So, if I have symptoms and needs answers I just sit at home and wait. I don't like this at all and not happy.
When I saw her 2 weeks ago, after exam (and previous stomach issues which I was told it was nothing by family Dr) she said I believe you have Pancreatitis and if symptoms get worse (which they have) we will have to change your meds next time I see you. So, since the lower of the dose so quickly I am feeling so much more
back pain, stomach pains and swelling. OH and my rash is slowly coming back since the dose has been lowered and it feels like I have a cold coming on . I think it's all from the dose being
lowered to quickly.
My tummy is swelling up so big I look 5 months preg , lol. but so very painful and back hurts so bad. I'm not sure how to find a dr I can just call the office and ask questions as to what to do etc.


My son is here visiting from San Fran so I will call you Tuesday if that is OK? I'm having such a nice visit and I'm actually laughing for the very first time in months. Yes, I have the pain etc, but having him
here is really helping me mentally.

HUGS TO YOU MARTA XOXOXOXO

HAPPY THANKSGIVING TO ALL MY CANADIAN WEGGIES