Re: Weaning off Prednisone

[Guest guest]

Hi, Theresa,

Sally in L. Rk here.

Weaning off Pred is a hellish experience!!

I would hope Dr. Trentham would let you stay on higher doses (or do a dos pak

during flares-ie, 40 mg 1st day, 35 next, down to 10 or below daily) while you

are getting used to the Minocin and while it is doing its job to get you better.

That's what my rheumy here did for me and it has been really great to know I

have that pain relief at my fingertips. He basically prescribed 3 per day and I

usu. keep it to 5-10 mg daily, with Celebrex, fish oil, and now Bromelain

(pineapple enzyme) for other inflammatory and pain relief.

Just looked down at list and saw Geoff is answering you about weaning off Pred.

That's good. My GP basically told me to go 10 mg for 1 mo, then 10 mg every

other day for 1 mo, then 5 mg for 1 mo, then 5 every other day for 2-3 wks, then

stop. Well I could NOT do that without some pain relief, so I'm going Mon to

see about ordering the Brand name Minocycline and possibly getting Doxycycline

from the base, meanwhile and staying on steroids until I get back to partial

remission. (Or maybe full-wouldn't that be wonderful?) I know name brand

Minocin is expensive but it's still cheaper than the biologics like Remicade,

etc., so maybe Tri-Care (Military) will pay for it....Here's hoping-put me in

your thoughts and prayers, everbody!!

Also, will see about a referral to a rheumy up near me and poss get on

sulfasalazine (DMARD) if all else fails as it has anti-invective(anti-biotic)

properties (its a sulfa drug) for Urinary tract and vaginal infections, middle

ear and ulcerative colitis and is prescribed for RA, Crohn's and ankylosiing

spondylitis (RA of the spine, basically).

Think this would be my best choice of DMARDS as I have suffered with many of the

above named infections since I got a tick bite in '92.

Good luck, Theresa!!

Sally in L. Rk

rheumatic Weaning off Prednisone

>Date: Wed, 12 Jul 2006 15:14:33 -0000

>

>Hi everyone,

>

>I was wondering if anyone can tell me if there are any symptoms

>associated with weaning off of prednisone. I was only on pred for 6

>months. I was about two months into a flare and my rheum at the time

>was saying I had to go on MTX. I flat out refused so he put me on

>10mg daily of pred until I could decide what to do. That was on

>12/30/05. Hoping to start the AP, I switched rheumys and started

>going to Dr. Trentham in Boston. He said he wanted me to get off the

>prednisone and start on minocin. I started minocin 200mg daily on

>2/24/06. On 3/1, I dropped my pred dose to 5mg daily. No problems.

>On 4/16 I dropped pred to 2.5mg daily. Sometime in May, I started

>having ankle swelling and pain in my lower legs mostly at night but

>lately it seems like it's all day. I went to my PCP in early June

>and he said he thought it might be the pred but didn't really tell me

>to stop. He said I should wear support stockings. I tried, they

>don't help. On 6/16 I went to Dr T and he said stop the pred which I

>did that day. Now I'm only on Minocin 200mg daily. I'm still having

>the ankle swelling and leg pain as well as being tired all the time.

>Occasionally I take Aleve (wow does that work great) just so I can

>cook dinner and clean up after or if my kids (dd8, ds6) have swimming

>lessons or a baseball game.

>

>Sorry this is so long. I wanted to see if anyone else that weaned

>off of pred has experienced any of these symptoms (or any others I

>didn't mention).

>

>TIA for any input.

>Theresa

>RA 6 yrs, AP 4 months

>

>

>

>

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

Hi Theresa! Geoff here.

Had a bit of a brain cramp. I wrote, " Stomach acid declines with age, as do

incidents of reflux and indigestion. " What I meant to write was, " Stomach acid

declines with age, while incidents of reflux and indigestion increase. "

I was meaning to clarify the connection between decreasing amounts of betaine

Hcl and increasing incidents of yuck -- but I blew it. Hope this clears it up.

Geoff

Acts 2:39

[Guest guest]

Hi Sally,

Dr T is on vacation until July 31. My next scheduled appointment

with him is August 16 but I intend to call him the week he's back. I

lowered my minocin dose from 200mg per day to 100mg per day and I'm

feeling much better. I still have some ankle swelling and pain but

between last week and this week it's gone from a 10 (worst) to a 2 or

3. I can live with this. Last week all I could think of was when

can I take another aleve.

Also, I need to talk to Dr T about supplements. Right now all I take

are Acidophilus, calcium w/ D, Beta Carotine(sp?) and iron. I've

been thinking about adding fish oil and some others I've read about

on here.

I hope you are able to get the brand minocin. I'll keep you in my

prayers.

Thanks for your input.

Theresa

>

> Hi, Theresa,

>

> Sally in L. Rk here.

>

> Weaning off Pred is a hellish experience!!

>

> I would hope Dr. Trentham would let you stay on higher doses (or do

a dos pak during flares-ie, 40 mg 1st day, 35 next, down to 10 or

below daily) while you are getting used to the Minocin and while it

is doing its job to get you better. That's what my rheumy here did

for me and it has been really great to know I have that pain relief

at my fingertips. He basically prescribed 3 per day and I usu. keep

it to 5-10 mg daily, with Celebrex, fish oil, and now Bromelain

(pineapple enzyme) for other inflammatory and pain relief.

>

> Just looked down at list and saw Geoff is answering you about

weaning off Pred. That's good. My GP basically told me to go 10 mg

for 1 mo, then 10 mg every other day for 1 mo, then 5 mg for 1 mo,

then 5 every other day for 2-3 wks, then stop. Well I could NOT do

that without some pain relief, so I'm going Mon to see about ordering

the Brand name Minocycline and possibly getting Doxycycline from the

base, meanwhile and staying on steroids until I get back to partial

remission. (Or maybe full-wouldn't that be wonderful?) I know name

brand Minocin is expensive but it's still cheaper than the biologics

like Remicade, etc., so maybe Tri-Care (Military) will pay for

it....Here's hoping-put me in your thoughts and prayers, everbody!!

>

> Also, will see about a referral to a rheumy up near me and poss get

on sulfasalazine (DMARD) if all else fails as it has anti-invective

(anti-biotic) properties (its a sulfa drug) for Urinary tract and

vaginal infections, middle ear and ulcerative colitis and is

prescribed for RA, Crohn's and ankylosiing spondylitis (RA of the

spine, basically).

>

> Think this would be my best choice of DMARDS as I have suffered

with many of the above named infections since I got a tick bite

in '92.

>

> Good luck, Theresa!!

>

> Sally in L. Rk

[Guest guest]

Thanks again Geoff!

>

> Hi Theresa! Geoff here.

>

> Had a bit of a brain cramp. I wrote, " Stomach acid declines with

age, as do incidents of reflux and indigestion. " What I meant to

write was, " Stomach acid declines with age, while incidents of reflux

and indigestion increase. "

>

> I was meaning to clarify the connection between decreasing amounts

of betaine Hcl and increasing incidents of yuck -- but I blew it.

Hope this clears it up.

>

>

> Geoff

>

> Acts 2:39

>

>

[Guest guest]

I've been on prednisone for almost 11 years. I didn't start the antiobiotic

therapy until 9 years ago. My problem is that everytime I try to go off the

prednisone I feel so much worse! In fact, I finally got down to 4 mgs every

other day ( and this took me so long to do!), but after being on this dosage for

a few months, I passed out in a local food store. I had developed bad

abdominal cramps and my blood pressure and blood sugar dropped. Fortunately,

the paremedics were great: hooked me up to IV's and oxygen and took me to the

ER. It turned out that I have adrenal insuffuciency due to long-term prednisone

use. I wish I never started it and yet I know that it really did help me. So

now the dr switched me from prednisone to hydrocortisone (30 mgs per day: 20 mgs

AM and 10 mgs with dinner). I do feel better but already I'm gaining weight

--definitely have a lot of fluid retention. My dr will try to slowly wean me

off the hydrocortisone but I am worried Did I mention that when I was on the

prednisone it caused me to develop Cushing's Syndrome? Anyone who has any

advice. feedback, etc. I would love to hear from you. Also does anyone know

the pros and cons of hydrocortisone vs prednisone? Thanks!

Carol E from NY

Re: rheumatic Weaning off Prednisone

Yes I know of two people but neither of them were " weaning " when it happened

I have been on prednisone 18 years and since about year 12 have from

time to time been " terrified " that this could one day happen but so far

so good.

Mel

NZ

(a seldom poster)

refrivera wrote:

> I have been on prednisone for 2 years now. I have been weaning off at

> 1mg every 4 weeks. So far okay but all of a sudden I seem to have a

> tear in the tendon of my achilles heal. The podiatrist says it is the

> prednisone. Now I am on crutches with the possibility of surgery. Has

> anyone had the same experience?

>

>

[Guest guest]

I have never weaned off Prednisone, but I have weaned off hormones, and I find

(as an RN), that I do best if I go waaaay slower than the medical assistant at

the doctor's office suggests. Doing it my way, I had no SE at all. Doing it

their way, I was miserable.

Carol

Member asks:

What types of problems are you having when trying to wean? I haven't had but

maybe 2 burst in the past 2 years so I am steady at 10mg per day.

I know in the past when I attempted to wean off I would feel sore and tired, but

I didn't have any other issues. I would like to have an idea of what to be

prepared for so I will know the difference between the pred wean and the xolair

side effects.