Re: Prednisone, again

[Guest guest]

Hi Patsy,

I understand that RA can and often does affect the spine-- most often

the neck. I had a similar experience. I was having a lot of pain in my

neck and upper back a few months ago, and the doctor put me on

Methotrexate. Within a few weeks, the pain was nearly gone.

Take care,

> .........the horrible pain in my back is gone too! A couple of

> weeks ago xrays showed 'degenerative joint disease' in my spine,

> which I presumed meant osteo-arthritis. But, Pred doesn't work on

> osteo does it?

[Guest guest]

pred is the only thing that helps me too, But ive read

people are on it for years at a time? My dr indicated

that if im on it constantly it leads to bad things.

Now im confused.

STacey

--- patsy56er <patsy56er@...> wrote:

> I went back up from 1 mg to 15 mg of Pred, planning

> on getting down

> and off of it quickly. Now, after only 2 days, my

> swollen, aching, fingers are just fine, but more

> than

> that.........the horrible pain in my back is gone

> too! A couple of

> weeks ago xrays showed 'degenerative joint disease'

> in my spine,

> which I presumed meant osteo-arthritis. But, Pred

> doesn't work on

> osteo does it? For the past couple of months, I

> have been having

> some serious pain whenever I got up from a sitting

> position, and have

> been unable to straighten up until I'd taken a few

> 'painful' steps.

> Today, no pain, no trouble getting up and down ! I

> can't wait to

> tell my rheumy because I realized that it began to

> hurt when he

> started weaning me off the pred, but my labs didn't

> indicate

> any inflammation. I know Prednisone is a bad drug,

> but it works. Of

> course I did manage to come down with a good case of

> the uglies

> today, probably because I don't sleep well when I'm

> on it. I guess

> I'll have to decide what course I'm going to take,

> if I should stay

> on it, maybe at 5 mg., until the end of February,

> when I see the

> rheumy again, or dose down quickly to my 1 mg like I

> had planned.

>

> I hate this nasty disease. I was more frightened of

> the PBC, but

> this RA is just plain mean. I'm not as bad off as a

> lot of you seem

> to be, or at least I didn't think I was. But if

> this is RA in my

> back, it's moving and it's getting worse, quickly.

>

> Patsy

> El Mirage, AZ

> DX 2005 Stage 1 PBC

> AIH/SLE/RA/COPE

> ..just a woman of letters.

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Some people are on what is termed 'maintance dosage'. Dh is on such, 5

mg/day. When he gets SOB (short of breathe) he has to kick it up.

He keeps trying to go off the maintance, but can't seem to do it.

Pred can cause muscle weakness too.

Rose

Re: [ ] Prednisone, again

> pred is the only thing that helps me too, But ive read

> people are on it for years at a time? My dr indicated

> that if im on it constantly it leads to bad things.

> Now im confused.

> STacey

> --- patsy56er <patsy56er@...> wrote:

>

[Guest guest]

I too am on maintenance dosage of 5mg per day. Have been on it for 4 years.

I don't feel or see muscle weakness. I also take Plaquinel. I went to my

annual eye check up and vision field test and I have rapidly advancing

encapsulated cataracts! There was 10 days between vision check and field

check,

and I could only read the second line on the eye chart....with my glasses!!! I

am scheduled for surgery on 12/28 and trying to schedule my other eye before

that. My husband's company has sold and I hate to pay $250.00 deductible

for 3 months of insurance .....and not sure I can afford COBRA!!!

Do any of you have Medicare Gap or plan D recomendations. I need help fast,

especially while I can see with my left eye slightly.

Thank YOu,

Carol M. in CA

[Guest guest]

Sometimes I hate the way meds are addressed. They can be the best thing

since sliced bread one day and be horrible, dangerous drugs the next. I

believe it's the result of the latest doctor newsletter or seminar. My

Rheumy didn't say anything negative for years about Prednisone, and all of a

sudden it's horrible and I need to get off it. My opinion is that's hogwash.

It's a 'knee-jerk' reaction based on what's the bad med of the day.

Yes, it can cause undesirable side effects, but it still gives me the

quality of life that I'm enjoying today. I do have osteoporosis, a byproduct

of other meds and age as well, and a couple of other things that so far are

minor. I'll keep taking the meds that work for me and will try new offerings

from my Doc if I feel they are worth trying and I can afford them.

Dennis in Eastexas

" It's not Rocket Surgery "

Re: [ ] Prednisone, again

> pred is the only thing that helps me too, But ive read

> people are on it for years at a time? My dr indicated

> that if im on it constantly it leads to bad things.

> Now im confused.

> STacey

> --- patsy56er <patsy56er@...> wrote:

>

>> I went back up from 1 mg to 15 mg of Pred, planning

>> on getting down

>> and off of it quickly. Now, after only 2 days, my

>> swollen, aching, fingers are just fine, but more

>> than

>> that.........the horrible pain in my back is gone

>> too! A couple of

>> weeks ago xrays showed 'degenerative joint disease'

>> in my spine,

>> which I presumed meant osteo-arthritis. But, Pred

>> doesn't work on

>> osteo does it? For the past couple of months, I

>> have been having

>> some serious pain whenever I got up from a sitting

>> position, and have

>> been unable to straighten up until I'd taken a few

>> 'painful' steps.

>> Today, no pain, no trouble getting up and down ! I

>> can't wait to

>> tell my rheumy because I realized that it began to

>> hurt when he

>> started weaning me off the pred, but my labs didn't

>> indicate

>> any inflammation. I know Prednisone is a bad drug,

>> but it works. Of

>> course I did manage to come down with a good case of

>> the uglies

>> today, probably because I don't sleep well when I'm

>> on it. I guess

>> I'll have to decide what course I'm going to take,

>> if I should stay

>> on it, maybe at 5 mg., until the end of February,

>> when I see the

>> rheumy again, or dose down quickly to my 1 mg like I

>> had planned.

>>

>> I hate this nasty disease. I was more frightened of

>> the PBC, but

>> this RA is just plain mean. I'm not as bad off as a

>> lot of you seem

>> to be, or at least I didn't think I was. But if

>> this is RA in my

>> back, it's moving and it's getting worse, quickly.

>>

>> Patsy

>> El Mirage, AZ

>> DX 2005 Stage 1 PBC

>> AIH/SLE/RA/COPE

>> ..just a woman of letters.

[Guest guest]

Geez,

I'm on and off Prednisone due to frequent flares. How I would love to just

stay on Prednisone.

In fact, I told my doctor I love steroids, and he laughed. I wanna stay on it !

I can't seem to find a good substitute after being off Methotrexate. Enbrel

doesn't do enough.

My Rheumy won't keep me on it.

Yet it is interesting to hear from some of you that say the quality of life is

worth the potential risks.

Many of us RA individuals have a reoccurrence of disease activity after weaning

off of it

________________________________________________________________________

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[Guest guest]

I had terrible reaction to plaquenal. We stopped it and started sulfasalazine

and I am so much happier.......We all need to keep open minds and try different

drugs. There is not one miracle drug.

Dandcmayer@... wrote: I too am on maintenance dosage of 5mg per

day. Have been on it for 4 years.

I don't feel or see muscle weakness. I also take Plaquinel. I went to my

annual eye check up and vision field test and I have rapidly advancing

encapsulated cataracts! There was 10 days between vision check and field check,

and I could only read the second line on the eye chart....with my glasses!!! I

am scheduled for surgery on 12/28 and trying to schedule my other eye before

that. My husband's company has sold and I hate to pay $250.00 deductible

for 3 months of insurance .....and not sure I can afford COBRA!!!

Do any of you have Medicare Gap or plan D recomendations. I need help fast,

especially while I can see with my left eye slightly.

Thank YOu,

Carol M. in CA

[Guest guest]

Since I was taken off of arava and humira for sinus infections I am back up on

my prednisone too. It's a never ending battle isn't it? It does seem to help

but

scared of it's long term usage side effects.

Joy

patsy56er <patsy56er@...> wrote:

I went back up from 1 mg to 15 mg of Pred, planning on getting down

and off of it quickly. Now, after only 2 days, my

swollen, aching, fingers are just fine, but more than

that.........the horrible pain in my back is gone too! A couple of

weeks ago xrays showed 'degenerative joint disease' in my spine,

which I presumed meant osteo-arthritis. But, Pred doesn't work on

osteo does it? For the past couple of months, I have been having

some serious pain whenever I got up from a sitting position, and have

been unable to straighten up until I'd taken a few 'painful' steps.

Today, no pain, no trouble getting up and down ! I can't wait to

tell my rheumy because I realized that it began to hurt when he

started weaning me off the pred, but my labs didn't indicate

any inflammation. I know Prednisone is a bad drug, but it works. Of

course I did manage to come down with a good case of the uglies

today, probably because I don't sleep well when I'm on it. I guess

I'll have to decide what course I'm going to take, if I should stay

on it, maybe at 5 mg., until the end of February, when I see the

rheumy again, or dose down quickly to my 1 mg like I had planned.

I hate this nasty disease. I was more frightened of the PBC, but

this RA is just plain mean. I'm not as bad off as a lot of you seem

to be, or at least I didn't think I was. But if this is RA in my

back, it's moving and it's getting worse, quickly.

Patsy

El Mirage, AZ

DX 2005 Stage 1 PBC

AIH/SLE/RA/COPE

...just a woman of letters.

Joy

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Visit Joy's Homepage and Reading Room!

http://jhoormann-ivil.tripod.com

Come see My Dog Salsa!

http://www.geocities.com/jhoorm01/Salsa.html

[Guest guest]

I am having difficultly weaning myself off the magical prednisone. I am so

hoping on a holistic approach and am now getting acupunture as well as my

dietary/lifestyle changes, and while I do feel better over all, I cannot seem to

get below, honestly, 15mgs of pred without really awful pain and swelling in my

ankles, knees, wrist and now today my back hurts and early a.m.(2ish) I woke up

with the pain in my head that I had a month ago when I was so sick. It's pretty

frustrating. I probably shouldn't really sweat it, as so far I am not

experiencing any of the side effects and maybe if I can get down to even ten mgs

I should count myself lucky. I know that you all understand and am very grateful

to have a place to vent. Thanks for listening....

in Colorado

=============

Since I was taken off of arava and humira for sinus infections I am back up on

my prednisone too. It's a never ending battle isn't it? It does seem to help

but

scared of it's long term usage side effects.

Joy

patsy56er <patsy56er@...> wrote:

I went back up from 1 mg to 15 mg of Pred, planning on getting down

and off of it quickly. Now, after only 2 days, my

swollen, aching, fingers are just fine, but more than

that.........the horrible pain in my back is gone too! A couple of

weeks ago xrays showed 'degenerative joint disease' in my spine,

which I presumed meant osteo-arthritis. But, Pred doesn't work on

osteo does it? For the past couple of months, I have been having

some serious pain whenever I got up from a sitting position, and have

been unable to straighten up until I'd taken a few 'painful' steps.

Today, no pain, no trouble getting up and down ! I can't wait to

tell my rheumy because I realized that it began to hurt when he

started weaning me off the pred, but my labs didn't indicate

any inflammation. I know Prednisone is a bad drug, but it works. Of

course I did manage to come down with a good case of the uglies

today, probably because I don't sleep well when I'm on it. I guess

I'll have to decide what course I'm going to take, if I should stay

on it, maybe at 5 mg., until the end of February, when I see the

rheumy again, or dose down quickly to my 1 mg like I had planned.

I hate this nasty disease. I was more frightened of the PBC, but

this RA is just plain mean. I'm not as bad off as a lot of you seem

to be, or at least I didn't think I was. But if this is RA in my

back, it's moving and it's getting worse, quickly.

Patsy

El Mirage, AZ

DX 2005 Stage 1 PBC

AIH/SLE/RA/COPE

...just a woman of letters.

Joy

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Visit Joy's Homepage and Reading Room!

http://jhoormann-ivil.tripod.com

Come see My Dog Salsa!

http://www.geocities.com/jhoorm01/Salsa.html

[Guest guest]

Hmmm, afraid of Prednisone? I am too, but stayed on it for 5 years or more, at

a low dose of 5 - 10 mg., for severe eczema. My new dr wanted me off it for

good. Last year when I went to Mayo Clinic for a second opionion of my PBC,

the hepaotologist said that although Prednisone can have some serious side

effects, in " my " case, being on it for the last five years, probably saved my

liver. We did not know that I had developed Auto-Immune Hepatitis, because the

Pred was controlling it. Go figure. As the saying goes sometimes " your damned

if you do, and your damned if you don't " . I'll take Pred any day, over some of

the drugs others RA patients need to take. And, along with that now, the

Imuran. I've had two cataract surgeries but have no proof that the pred caused

them. Neither of the drugs cause me visible effects aside from the weight gain

and 'round' face. I have no idea what it's doing to my internal parts, but I'm

pretty much pain free and leading as normal a life as possible, as long as I

take the pred for flares. Quality of life is important to those of us afflicted

with this ugliness.

Patsy

El Mirage, AZ

DX 2005 Stage 1 PBC

AIH/SLE/RA/COPD

Just a woman of letters....

[Guest guest]

I find that with each step down of the prednisone, I have two weeks

of being absolutely miserable before my body adjusts. Since the doc

is having me go down by 1mg per month, that means that I have two

rotten weeks followed by two when I feel a lot better.

In the beginning, I thought it was my RA flaring. But I've learned

that you can get symptoms that mimic RA when you are reducing

prednisone, even if you don't have RA. So I just take more pain

meds, and grind through those two bad weeks, knowing that I will

probably feel better afterwards. If I didn't, I would talk to the

doctor, because at that point, I'd wonder whether the other drugs

I'm on (in my case currently, Humira and Mtx) were working well

enough.

> I went back up from 1 mg to 15 mg of Pred, planning on

getting down

> and off of it quickly. Now, after only 2 days, my

> swollen, aching, fingers are just fine, but more than

> that.........the horrible pain in my back is gone too! A couple of

> weeks ago xrays showed 'degenerative joint disease' in my spine,

> which I presumed meant osteo-arthritis. But, Pred doesn't work on

> osteo does it? For the past couple of months, I have been having

> some serious pain whenever I got up from a sitting position, and

have

> been unable to straighten up until I'd taken a few 'painful'

steps.

> Today, no pain, no trouble getting up and down ! I can't wait to

> tell my rheumy because I realized that it began to hurt when he

> started weaning me off the pred, but my labs didn't indicate

> any inflammation. I know Prednisone is a bad drug, but it works.

Of

> course I did manage to come down with a good case of the uglies

> today, probably because I don't sleep well when I'm on it. I guess

> I'll have to decide what course I'm going to take, if I should

stay

> on it, maybe at 5 mg., until the end of February, when I see the

> rheumy again, or dose down quickly to my 1 mg like I had planned.

>

> I hate this nasty disease. I was more frightened of the PBC, but

> this RA is just plain mean. I'm not as bad off as a lot of you

seem

> to be, or at least I didn't think I was. But if this is RA in my

> back, it's moving and it's getting worse, quickly.

>

> Patsy

> El Mirage, AZ

> DX 2005 Stage 1 PBC

> AIH/SLE/RA/COPE

> ..just a woman of letters.

>

>

>

>

>

>

> Joy

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> Visit Joy's Homepage and Reading Room!

> http://jhoormann-ivil.tripod.com

> Come see My Dog Salsa!

> http://www.geocities.com/jhoorm01/Salsa.html

>

>

>

>

>

>

>

>

>

[Guest guest]

I just stopped taking Prednisone. I hated being on it....I felt wierd

the whole time, but now that I am off of it, I am having horrible pain

again. My Rhuemy put me on 15 mg for 15 days to see how I responded. I

will go back after the holidays to determine what my next course of

action will be...I really do not want to go back on the prednisone since

in 15 days I gained 8 lbs, and I am already struggling with my weight.

Also since I went off of the Prednisone, I notice I am retaining even

more water than I was while on it..is this normal?

Thanks,

>

> I went back up from 1 mg to 15 mg of Pred, planning on getting down

> and off of it quickly. Now, after only 2 days, my

> swollen, aching, fingers are just fine, but more than

> that.........the horrible pain in my back is gone too! A couple of

> weeks ago xrays showed 'degenerative joint disease' in my spine,

> which I presumed meant osteo-arthritis. But, Pred doesn't work on

> osteo does it? For the past couple of months, I have been having

> some serious pain whenever I got up from a sitting position, and have

> been unable to straighten up until I'd taken a few 'painful' steps.

> Today, no pain, no trouble getting up and down ! I can't wait to

> tell my rheumy because I realized that it began to hurt when he

> started weaning me off the pred, but my labs didn't indicate

> any inflammation. I know Prednisone is a bad drug, but it works. Of

> course I did manage to come down with a good case of the uglies

> today, probably because I don't sleep well when I'm on it. I guess

> I'll have to decide what course I'm going to take, if I should stay

> on it, maybe at 5 mg., until the end of February, when I see the

> rheumy again, or dose down quickly to my 1 mg like I had planned.

>

> I hate this nasty disease. I was more frightened of the PBC, but

> this RA is just plain mean. I'm not as bad off as a lot of you seem

> to be, or at least I didn't think I was. But if this is RA in my

> back, it's moving and it's getting worse, quickly.

>

> Patsy

> El Mirage, AZ

> DX 2005 Stage 1 PBC

> AIH/SLE/RA/COPE

> ..just a woman of letters.

>

[Guest guest]

Dear ,

Thank you, I have contacted my Dr.'s insurance office and they said they

would help me, plus give me contacts with pharmaceutical reps that can help with

meds. It has been a very difficult year. Broken leg, scammed out of our

house by preditory lenders (dealing with FBI and threats because of it). And

having to keep quiet about everything. So I know this is going to be the

start of something better. We have downsized and moved into a Sr. Mobile Home

Park.....I love it. I have the sweetest neighbors, all about 80 and just

treasures! The smasller house is easier to care for and my cats love the field

next door. So things are going to be ok....but I will keep you posted about

the surgery. I asked if the cataract would come back, and the Dr. said it was

just a simple maintenance on the inserted lens. I have a lot of faith in my

Opthamalogist.

Please take care and have a wonderful holiday.

Gentle Hugs & Prayers,

Carol M. in CA

[Guest guest]

Carol, I don't have experience with Medicare, but I do wish you luck with

your cataract surgery. I hope everything works out for you.

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

Re: [ ] Prednisone, again

>I too am on maintenance dosage of 5mg per day. Have been on it for 4

>years.

> I don't feel or see muscle weakness. I also take Plaquinel. I went to

> my

> annual eye check up and vision field test and I have rapidly advancing

> encapsulated cataracts! There was 10 days between vision check and field

> check,

> and I could only read the second line on the eye chart....with my

> glasses!!! I

> am scheduled for surgery on 12/28 and trying to schedule my other eye

> before

> that. My husband's company has sold and I hate to pay $250.00 deductible

> for 3 months of insurance .....and not sure I can afford COBRA!!!

>

> Do any of you have Medicare Gap or plan D recomendations. I need help

> fast,

> especially while I can see with my left eye slightly.

>

> Thank YOu,

> Carol M. in CA

[Guest guest]

I have to avoid Steroids at all costs. I had my pancreas removed and

had an islet cell transplant (my own cells). Steroids can destroy the

islet cells, which in turn would make me a diabetic. There are no

guarantees I won't become diabetic, but using steroids chronically

would just about seal the deal for me....So, my Drs. have told me to

avoid them at all costs.

>

> Hmmm, afraid of Prednisone? I am too, but stayed on it for 5 years

or more, at a low dose of 5 - 10 mg., for severe eczema. My new dr

wanted me off it for good. Last year when I went to Mayo Clinic for

a second opionion of my PBC, the hepaotologist said that although

Prednisone can have some serious side effects, in " my " case, being on

it for the last five years, probably saved my liver. We did not know

that I had developed Auto-Immune Hepatitis, because the Pred was

controlling it. Go figure. As the saying goes sometimes " your

damned if you do, and your damned if you don't " . I'll take Pred any

day, over some of the drugs others RA patients need to take. And,

along with that now, the Imuran. I've had two cataract surgeries but

have no proof that the pred caused them. Neither of the drugs cause

me visible effects aside from the weight gain and 'round' face. I

have no idea what it's doing to my internal parts, but I'm pretty much

pain free and leading as normal a life as possible, as long as I take

the pred for flares. Quality of life is important to those of us

afflicted with this ugliness.

>

>

> Patsy

> El Mirage, AZ

> DX 2005 Stage 1 PBC

> AIH/SLE/RA/COPD

> Just a woman of letters....

>

>