Re: Drug Dilemma -- What to take or not to take?

[Guest guest]

Hi Ira.  I will address each issue you have one at a time.

 

I have been on daily Pred. use for over 6 years now.  Basically, I take 5 mg. a

day, unless I begin to flare.  Right now, I am on 10 mg. a day and doing

great.  After my surgery this week, I will cut down to 5 mg. if possible.  It

is truly my wonder drug.  Without it, I would be in a wheelchair or worse.  I

did get the catarac's from the Pred. but this is not like what most elders

get.  It is a very fast surgery, less then a minute.  No recovery period or

pain or anything.  I had both eyes done a week apart.  I have worn  glass

since I was 14 for distance, and my last exam for glasses my eyes were so bad, I

was almost legally blind.  I had the catarac's removed, my vision is 20/15 and

20/20.  Perfect eyesight and I do not need glasses anymore.  I pick up the

over the counter readers, 150 strength, and it is all perfect.

 

My Rheumy moniters my blood work every 2 months, and it has always been great. 

The only thing that shows is when I am in a bad flare and the numbers are

high.  Everything else has been perfect from day one.

 

I inject my MTX 1 X a week, .8 on the needle.  She also added Sulfasalazine,

which I take 6 daily, the max. dose, and she added Placquenil, which I take 2x

a day.  Both of these along with MTX and Pred. are working so well for me.  I

was flare and pain free over a year now, with a minor flare 4 weeks ago.  She

uped the Pred. to 20 a day for a few days and then down to 10mg. a day.  I feel

great and have no pain or swelling anywhere.  The only pain I have now is the

RA nodule on my foot, which is being removed surgically this Thurs.  I am doing

really so good.

 

I will address your reluctence to stay on Pred. or are fearful of other RA

meds.  This pertains to me.......I dond't care what I have to take or for how

long as long as these meds. work well for me, and they all sure have.  I know

the dangers of all the meds. I take and I do not give it a thought.  I knew

when I got diagnosed, the Rheumy told me about it and I was scared to death. 

But, I made up my mind that I could not stand the pain, swelling, and suffering

each day, and would take what I had to in order to get better.  My life was in

a downward slide when I first got sick with RA.  I thought I had a brain tumor,

that's how bad I was.  Any drug that we take for a serious disease is going to

have side effects.  I really don't think about that.  As long as my blood work

is fine and I am feeling so good, I don't even give my meds. a thought.  I am

just so damn happy to have my life back.  Yes, I had to change a lot of things,

but I work around

that, and, mostly, I rest each and everyday as my Rheumy wants me to do.

 

I hope that you can come to terms with what you need to feel better.  We owe

ourselves the best we can do for us.  It is our lives, and I want to live as

best as I can without that horrible, unbearing pain and suffering I was in.  I

have made the best choice for myself.

 

I hope this helps you see things from another perspective and person.  Wishing

you better days ahead, and to be pain free.  I know you will make the best

decision  for yourself and your RA.  It is a very ugly beast of a disease, as

everyone here knows all to well.

 

Hugs,

 

Barbara

From: irabrightman <searcher100yy@...>

Subject: [ ] Drug Dilemma -- What to take or not to take?

Date: Monday, June 21, 2010, 1:03 PM

 

Hi All,

I stopped my low dose of prednisone (3mgs. daily) because of fear of long-term

side-effects. My rheumy wanted me to stay on it indefinitely. I have osteopenia

(pre-oeteoporosis) in my left foot, and the beginnings of cataracts. But since

I'm 69, maybe these are related to age. I'm also on MTX (15mgs. weekly) which is

helping. (I've had RA for two years).

We tried raising my MTX but it didn't make much of a difference. My symptoms

(such as bicep pain and slight wrist weakness) are worse but not horrible. Maybe

just live with them, but then maybe the RA will cause damage to wrists or

something?

The doc wants me to go back on the 3mgs. prednisone. I mentioned Enbrel and

other biologics, but we thought they wouldn't be a good idea. That's because it

looks like I already have a somewhat weak immune system as evidenced by the fact

I've had Multiple Chemical Sensitivities for a number of years (before RA) and

in the winter can get various symptoms like fatigue and sweating if I'm not

careful.

I'm thinking maybe go back on the 3mgs. prednisone and get periodically

monitored for the cataracts and osteoporosis. If either gets worse then stop the

prednisone.

Not sure if there are any other drugs that should be considered in lieu of the

3mgs. prednisone. (Sulfasalazine? Plaquenil? Something else? Just live with the

symptoms and hope the RA does not do damage?)

So, would appreciate any thoughts or info anyone has on any of the above.

Best to everyone,

Ira Brightman

[Guest guest]

Thanks Barbara. I spoke too soon about my symptoms. They are bad today and

worsening. I will have to take something. Anyone else who could help me make a

decision please provide whatever info or advice you can.

Ira

>

> Hi Ira.  I will address each issue you have one at a time.

>  

> I have been on daily Pred. use for over 6 years now.  Basically, I take 5 mg.

a day, unless I begin to flare.  Right now, I am on 10 mg. a day and doing

great.  After my surgery this week, I will cut down to 5 mg. if possible.  It

is truly my wonder drug.  Without it, I would be in a wheelchair or worse.  I

did get the catarac's from the Pred. but this is not like what most elders

get.  It is a very fast surgery, less then a minute.  No recovery period or

pain or anything.  I had both eyes done a week apart.  I have worn  glass

since I was 14 for distance, and my last exam for glasses my eyes were so bad, I

was almost legally blind.  I had the catarac's removed, my vision is 20/15 and

20/20.  Perfect eyesight and I do not need glasses anymore.  I pick up the

over the counter readers, 150 strength, and it is all perfect.

>  

> My Rheumy moniters my blood work every 2 months, and it has always been

great.  The only thing that shows is when I am in a bad flare and the numbers

are high.  Everything else has been perfect from day one.

>  

> I inject my MTX 1 X a week, .8 on the needle.  She also added Sulfasalazine,

which I take 6 daily, the max. dose, and she added Placquenil, which I take 2x

a day.  Both of these along with MTX and Pred. are working so well for me.  I

was flare and pain free over a year now, with a minor flare 4 weeks ago.  She

uped the Pred. to 20 a day for a few days and then down to 10mg. a day.  I feel

great and have no pain or swelling anywhere.  The only pain I have now is the

RA nodule on my foot, which is being removed surgically this Thurs.  I am doing

really so good.

>  

> I will address your reluctence to stay on Pred. or are fearful of other RA

meds.  This pertains to me.......I dond't care what I have to take or for how

long as long as these meds. work well for me, and they all sure have.  I know

the dangers of all the meds. I take and I do not give it a thought.  I knew

when I got diagnosed, the Rheumy told me about it and I was scared to death. 

But, I made up my mind that I could not stand the pain, swelling, and suffering

each day, and would take what I had to in order to get better.  My life was in

a downward slide when I first got sick with RA.  I thought I had a brain tumor,

that's how bad I was.  Any drug that we take for a serious disease is going to

have side effects.  I really don't think about that.  As long as my blood work

is fine and I am feeling so good, I don't even give my meds. a thought.  I am

just so damn happy to have my life back.  Yes, I had to change a lot of things,

but I work around

> that, and, mostly, I rest each and everyday as my Rheumy wants me to do.

>  

> I hope that you can come to terms with what you need to feel better.  We owe

ourselves the best we can do for us.  It is our lives, and I want to live as

best as I can without that horrible, unbearing pain and suffering I was in.  I

have made the best choice for myself.

>  

> I hope this helps you see things from another perspective and person. 

Wishing you better days ahead, and to be pain free.  I know you will make the

best decision  for yourself and your RA.  It is a very ugly beast of a

disease, as everyone here knows all to well.

>  

> Hugs,

>  

> Barbara

[Guest guest]

Hi, Ira. There are many treatment options.

One caution: although prednisone is a powerful anti-inflammatory and

may have some disease-modifying effects, prednisone isn't considered a

disease-modifying antirheumatic drug (DMARD). Do you have any joint

damage? Do you have a lot of swelling? Fatigue? Morning stiffness?

Some rheumatologists combine traditional DMARDs to bring the disease

under good control. Some possibilities: MTX + Plaquenil

(hydroxychloroquine); MTX + sulfasalazine; MTX + Plaquenil +

sulfasalazine; and MTX + Arava (leflunomide). Or Arava could be tried

instead of MTX. Less commonly used non-biologics: azathioprine,

cyclophosphamide, cyclosporine, gold, minocycline, and doxycycline.

Have you seen only one rheumatologist? It might be a good idea to get

a second opinion about treatment options.

http://www.hopkins-arthritis.org/arthritis-info/rheumatoid-arthritis/rheum_treat\

..html

http://www.hss.edu/conditions_14295.asp

http://www.hss.edu/conditions_14137.asp

Not an MD

On Mon, Jun 21, 2010 at 12:03 PM, irabrightman <searcher100yy@...> wrote:

> Hi All,

>

> I stopped my low dose of prednisone (3mgs. daily) because of fear of long-term

side-effects. My rheumy wanted me to stay on it indefinitely. I have osteopenia

(pre-oeteoporosis) in my left foot, and the beginnings of cataracts. But since

I'm 69, maybe these are related to age. I'm also on MTX (15mgs. weekly) which is

helping. (I've had RA for two years).

>

> We tried raising my MTX but it didn't make much of a difference. My symptoms

(such as bicep pain and slight wrist weakness) are worse but not horrible. Maybe

just live with them, but then maybe the RA will cause damage to wrists or

something?

>

> The doc wants me to go back on the 3mgs. prednisone. I mentioned Enbrel and

other biologics, but we thought they wouldn't be a good idea. That's because it

looks like I already have a somewhat weak immune system as evidenced by the fact

I've had Multiple Chemical Sensitivities for a number of years (before RA) and

in the winter can get various symptoms like fatigue and sweating if I'm not

careful.

>

> I'm thinking maybe go back on the 3mgs. prednisone and get periodically

monitored for the cataracts and osteoporosis. If either gets worse then stop the

prednisone.

>

> Not sure if there are any other drugs that should be considered in lieu of the

3mgs. prednisone. (Sulfasalazine? Plaquenil? Something else? Just live with the

symptoms and hope the RA does not do damage?)

>

> So, would appreciate any thoughts or info anyone has on any of the above.

>

> Best to everyone,

> Ira Brightman

[Guest guest]

Ira,

Prednisone has a lot of bad side effects. Here is an article that

tells about them:

http://ibdcrohns.about.com/cs/prescriptiondrugs/p/medprednisone.htm

I was on prednisone at a low dose for a few months not long after my

RA started, but when I learned about the side effects, I tapered off

of it as soon as I could. In my opinion, it is not a long-term

solution. Others may disagree. But if you take just 3 mg a day for

just a short time, so that your body won't become dependent on it, you

and your doctor might decide on that. There are other DMARDs besides

the biologics that your doctor might try. Arava is one that helped me

for a while.

All of us with this disease have a wonky immune system that is

overactive and decides to attack the joints. You won't know what

effect a med will have on you until you try it. Frequent blood work

will be done to monitor any side effects.

Good luck, and I hope you get some relief soon.

Sue

On Jun 21, 2010, at 5:13 PM, irabrightman wrote:

> Thanks Barbara. I spoke too soon about my symptoms. They are bad

> today and worsening. I will have to take something. Anyone else who

> could help me make a decision please provide whatever info or advice

> you can.

>

[Guest guest]

Hi ,

Thanks for the reply. In answer to your questions, I don't have swelling or

morning sickness. There's some danage to my hands (can't make a fist and some

fingers are bent) because I didn't take any medicine at first since I was

misdiagnosed until the hand damage showed I had RA. I have fatigue, like body

fatigue after doing what to a well person would be a relatively minor amount of

walking (say ten blocks in a day), but not otherwise. I usually rest up the day

after doing some walking.

I don't think I have other joint damage, but have problems with my left foot --

osteopenia, and some pain -- seeing a foot doc next week. I also have

osteoarthritis in my knees and they are worse since stopping the prednisone, but

not sure if that's the reason.

I saw another doctor some months back who told me to get off the prednisone, and

increase MTX if symptoms increased (which I suggested to my regular rheumy --

the other doc was in his same practice and substituted for him once) but that

didn't work. I may try another rheumy for another opinion.

Best to all,

Ira

>

> Hi, Ira. There are many treatment options.

>

> One caution: although prednisone is a powerful anti-inflammatory and

> may have some disease-modifying effects, prednisone isn't considered a

> disease-modifying antirheumatic drug (DMARD). Do you have any joint

> damage? Do you have a lot of swelling? Fatigue? Morning stiffness?

>

> Some rheumatologists combine traditional DMARDs to bring the disease

> under good control. Some possibilities: MTX + Plaquenil

> (hydroxychloroquine); MTX + sulfasalazine; MTX + Plaquenil +

> sulfasalazine; and MTX + Arava (leflunomide). Or Arava could be tried

> instead of MTX. Less commonly used non-biologics: azathioprine,

> cyclophosphamide, cyclosporine, gold, minocycline, and doxycycline.

>

> Have you seen only one rheumatologist? It might be a good idea to get

> a second opinion about treatment options.

>

>

>

http://www.hopkins-arthritis.org/arthritis-info/rheumatoid-arthritis/rheum_treat\

..html

>

> http://www.hss.edu/conditions_14295.asp

>

> http://www.hss.edu/conditions_14137.asp

>

>

>

> Not an MD

>

[Guest guest]

Yikes! I've been on 30mg a day for months! And before that 40mg a day for a

month.

: (

Candace

Sent from my iPhone

On Jun 21, 2010, at 9:52 PM, marysue <marysue@...> wrote:

But if you take just 3 mg a day for

just a short time, so that your body won't become dependent on it, you

and your doctor might decide on that.

[Guest guest]

It wouldn't hurt to see another rheumatologist, Ira.

Good luck. I hope you'll figure out a treatment plan that is safe and

effective for you.

Not an MD

On Tue, Jun 22, 2010 at 10:54 AM, irabrightman <searcher100yy@...> wrote:

> Hi ,

>

> Thanks for the reply. In answer to your questions, I don't have swelling or

morning sickness. There's some danage to my hands (can't make a fist and some

fingers are bent) because I didn't take any medicine at first since I was

misdiagnosed until the hand damage showed I had RA. I have fatigue, like body

fatigue after doing what to a well person would be a relatively minor amount of

walking (say ten blocks in a day), but not otherwise. I usually rest up the day

after doing some walking.

>

> I don't think I have other joint damage, but have problems with my left foot

-- osteopenia, and some pain -- seeing a foot doc next week. I also have

osteoarthritis in my knees and they are worse since stopping the prednisone, but

not sure if that's the reason.

>

> I saw another doctor some months back who told me to get off the prednisone,

and increase MTX if symptoms increased (which I suggested to my regular rheumy

-- the other doc was in his same practice and substituted for him once) but that

didn't work. I may try another rheumy for another opinion.

>

> Best to all,

> Ira

>

[Guest guest]

I have to agree with most of the posts. I too am on Prednisone but only 10 mgs

a day and that keeps me pretty controlled. I am scared of the drug but right

now without I would be couch ridden. I am functional because of it and my pain

meds. I try to supplement as much as I can, I take vit d daily, and calcium

also. I do not like the side effects from the pred but a little extra facial

hair is manageable and the acne can be treated but the opposite to that is

severe pain and stiffness and no quality of life. You need to weigh your

options and do what works for you. I cannot take MTX as it plays havoc on my

liver so any other drugs are off limit to me right now till we get my liver

function under control. I always said if you were told you were diabetic you

would not hesitate to take insulin? So do what you need to do to get under

control. good luck!

Tammy.

>

> Thanks Barbara. I spoke too soon about my symptoms. They are bad today and

worsening. I will have to take something. Anyone else who could help me make a

decision please provide whatever info or advice you can.

>

> Ira

[Guest guest]

I am really glad I came upon this group as I am learning things my

Rheumatologist has never told me. I guess maybe I don't know the right

questions to ask.

It may be just coincidence, but within the last 6 months, my blood work came

back with elevated liver enzymes causing my Rheumatologist to be concerned and

ordering up another profile for the next 3 month visit to monitor. He didn't

advise me to do anything about it but I took it on my own to research and add

Milk Thistle to my supplementation regime and the next report done was back in

normal range.

Does anyone else take this for improved liver function? I take 20mg of

Methotrexate 1x/weekly and now....thanks to this list, I have upped my folic

acid the day after dosing.

Rojo in Grass Valley, CA

[Guest guest]

Milk thistle has helped me too! It's a wonder supplement!!!

Candace

Sent from my iPhone

On Jun 24, 2010, at 9:43 AM, " " <ntrojo@...> wrote:

Does anyone else take this for improved liver function? I take 20mg of

Methotrexate 1x/weekly and now....thanks to this list, I have upped my folic

acid the day after dosing.

Rojo in Grass Valley, CA