Re: Questions - plaquenil, etc.

[Guest guest]

Hi, Roselyn,

I don't post much either, but have gotten so much information from this group!

Thank you to all.

I've been on Plaquenil for about 5 years now. I've kept notes and have just read

back on some of them.

Background: MY RA was diagnosed through a blood test, while checking out other

health concerns (which resulted in bladder surgery, found fibroids, stomach

ulcer acting up, etc. Later EBV and blahblahblah)

Was sent to Rheumy who put me on Plaquenil as preventative measure. I was

diagnosed with arthritis in general 11 years ago, and have some changes in

fingers, etc although the pain was never much. I have a high pain threshold,

doctors said.

Your question: > Have any of you noticed a difference in the brand and generic

plaquenil? My doc says there seems to be more side-effects with the generic,

but I haven't had problems taking it once a day. >>

Generic plaquenil gave me a very bad rash, caused severe stomach cramps, etc.

Switched to the name brand.

Cramps and bloating continued and I had to take Ovol (over the counter) at first

to help control that.

Now I always take Plaquenil (two a day) with a glass of milk or a meal, and that

seems to help with the stomach cramps.

Your question: > Am I just being impatient wanting to feel good too quickly?>>

I found it took months to see a change, but thought it was because I didn't have

much pain to start with.

However, the pain became worse over the last years and I was grateful to have

been diagnosed already because that explained some of the pain and other health

issues.

Hope this answers some of your questions? Sorry if I'm long-winded!

You can also do a search in the messages archive of the group, looking for

Subject Plaquenil, and see what others have said.

Meerkat (currently in Canada, originally from South Africa)

>

> Am I just being impatient wanting to feel good too quickly?

> Is this a good reason to finally retire & do what I WANT to do? (I'm 67 now -

still working full time and wanting to stay hom and pain and quilt while I still

can!)

>

> Thanks for a place to get help and just share with folks who understand.

>

> Roselyn in Louisiana

>

[Guest guest]

Hi Roselyn:

     I am glad you posted with these questions.  I am very sorry you have

RA, and are enduring that awful pain and suffering every day.

     I have been on Placquenil for almost 5 years, with no adverse

reactions.  In fact, I have taken all my RA meds. successfully.  The only

thing I changed is going from the MTX pills to the injection form.  My stomach

could not tolerate the pills.  I take Prilosec 2 X a day and have no stomach

issues at all.  I have acid reflux.

     I have found everyone here has  different reactions to the meds., and

are different in pain tolerance too.  I have a very high tolerance to pain, so

when I was flaring, I would immediately start taking some RX pain meds.  They

have all worked well for me.

    I have had RA for 5  1/2 years, and for the last 1  1/2 years, I have

been in a medicine induced remission.  I take the maximum doses on these meds.

and have never been off Prednisone.  I keep trying from time to time to get off

it, but have not been successful doing so.

I will try again soon.

     I have RA in my hands, wrists, thumbs and some fingers, as well as my

feet and ankles.  In the beginning I could not do much with my hands.  Like

you I do crafts, hand sewing and hand quilting, stenciling, crocheting,

Needlepoint, and Folk Art painting.  For the last 2 years, I am doing all this,

but in a short period of time.  It is hard to sit for too long as it is very

hard to get up, etc.  I get so stiff and am afraid of falling again.  I am

just very happy to enjoy this part of my life.  A few hours to do the things I

love to do is fine with me.  I will be 70 next week, and am retired.  If you

don't need to work,  then I say retire, and enjoy all the things that you can

while you can.  I know I could not work with RA flaring as bad as it did in the

beginning.  Today is a different story.  There are some things I can't do

anymore, and that is ok.  I am just happy I can do some things, even if I do

them differently.  At least

I get things done.  My Rheumy insists that I rest each day, which I do.  Rest

is so important, as I tire easily.  My feet and ankles were hit the worst, so I

get off my feet as much as possible.  When I was flaring badly, I could not

take the pain in them.  I literally wanted to chop them off, they were that

bad.

     I have learned to take one day at a time, and pace myself, which was

very hard for me to do. I always did so much each day, but not anymore.  I just

do what I can, when I can, and am happy with that.  Never feel guilty about

passing up a lunch date with friends, or for resting more.

Our bodies need the rest as it is fighting a very hard battle 24/7 with RA.

    In the beginning, I wondered when and if I would ever be pain free. 

Well, thankfully it happened for me 1  1/2 years ago as I stated.  How long

its lasts, I do not know, but I am very thankful to be out of that God awful

pain.

    I wish you many pain free days ahead.  Just try to enjoy each day the

best way you.

 

Hugs,

 

Barbara

 

 

From: Roselyn <roselyn827@...>

Subject: [ ] Questions - plaquenil, etc.

Date: Friday, January 22, 2010, 7:21 AM

 

I rarely post, just learn from reading all the wisdom shared here. Things are

changing for me, tho, and now I have some questions. I've been on Plaquenil for

a little over two years with no problems. Two weeks ago my hands got much worse

overnight. Pain and swelling in both hands, numbness, etc. My theumy just told

me Wednesday that I need to increase the plaquenil dosage and take it twice a

day. Now I'm having some problems with nausea which I HOPE will stop soon. He

says the " disease is progressing " and we have to do a little more. I'm on the

third day of a medrol dose pack, and my joints have improved a little.

Now for the questions:

Have any of you noticed a difference in the brand and generic plaquenil? My doc

says there seems to be more side-effects with the generic, but I haven't had

problems taking it once a day.

Could the steroid be adding to the problem with nausea?

Am I just being impatient wanting to feel good too quickly?

Is this a good reason to finally retire & do what I WANT to do? (I'm 67 now -

still working full time and wanting to stay hom and pain and quilt while I still

can!)

Thanks for a place to get help and just share with folks who understand.

Roselyn in Louisiana

[Guest guest]

Roselyn,

As a nurse and a fellow RA sufferer I wanted to let you know the prednisone can

cause nausea as well as other very strange side effects. I am on plaquenil 2

pills daily,MTX and Prednisone(5mg every day for 6 months) and it's more than

likely the dose pak making you nauseated than the plaquenil. I hope you get to

feeling better soon!

vicky

>

> I rarely post, just learn from reading all the wisdom shared here. Things are

changing for me, tho, and now I have some questions. I've been on Plaquenil for

a little over two years with no problems. Two weeks ago my hands got much worse

overnight. Pain and swelling in both hands, numbness, etc. My theumy just told

me Wednesday that I need to increase the plaquenil dosage and take it twice a

day. Now I'm having some problems with nausea which I HOPE will stop soon. He

says the " disease is progressing " and we have to do a little more. I'm on the

third day of a medrol dose pack, and my joints have improved a little.

> Now for the questions:

> Have any of you noticed a difference in the brand and generic plaquenil? My

doc says there seems to be more side-effects with the generic, but I haven't had

problems taking it once a day.

> Could the steroid be adding to the problem with nausea?

> Am I just being impatient wanting to feel good too quickly?

> Is this a good reason to finally retire & do what I WANT to do? (I'm 67 now -

still working full time and wanting to stay hom and pain and quilt while I still

can!)

>

> Thanks for a place to get help and just share with folks who understand.

>

> Roselyn in Louisiana

>

[Guest guest]

Hello, Girlfriend!

Roselyn and I are a part of a group for our Fuchs' corneal dystrophy,

and we actually met last year at a Fuchs' symposium in Durham, NC.

When I found out she had RA, I told her about this group.

Roselyn, I've never been on Plaquenil, so I can't help you with that.

My advice is to be the squeaky wheel that gets the grease; in other

words, keep complaining to your rheumatologist that you are having

pain and nausea. Make sure that he treats your RA aggressively, so

that hopefully joint damage will not occur. RA does tend to progress,

and it might be that he needs to pull out the heavy guns, such as

methotrexate, a tried and true med that has been used successfully for

many years for RA. The thinking these days is to treat it aggressively

from the beginning.

And, yes, I think you should go ahead and retire. It's nice to be able

to do what you want to do.

Sue

On Jan 22, 2010, at 7:21 AM, Roselyn wrote:

> I rarely post, just learn from reading all the wisdom shared here.

> Things are changing for me, tho, and now I have some questions.

> I've been on Plaquenil for a little over two years with no problems.

> Two weeks ago my hands got much worse overnight. Pain and swelling

> in both hands, numbness, etc. My theumy just told me Wednesday that

> I need to increase the plaquenil dosage and take it twice a day.

> Now I'm having some problems with nausea which I HOPE will stop

> soon. He says the " disease is progressing " and we have to do a

> little more. I'm on the third day of a medrol dose pack, and my

> joints have improved a little.

> Now for the questions:

> Have any of you noticed a difference in the brand and generic

> plaquenil? My doc says there seems to be more side-effects with the

> generic, but I haven't had problems taking it once a day.

> Could the steroid be adding to the problem with nausea?

> Am I just being impatient wanting to feel good too quickly?

> Is this a good reason to finally retire & do what I WANT to do?

> (I'm 67 now - still working full time and wanting to stay hom and

> pain and quilt while I still can!)

>

> Thanks for a place to get help and just share with folks who

> understand.

>

> Roselyn in Louisiana

>

[Guest guest]

Thanks, Sue, and others who answered. It made me feel like it would all be OK.

I'm on the 4th day of the dose pack and the nausea was gone by yesterday. My

joints are much better, and I feel sure we will find some permanent (for now)

solutions when I see my doc Thursday. Thanks for being there.

Roselyn

>

> Hello, Girlfriend!

>

> Roselyn and I are a part of a group for our Fuchs' corneal dystrophy,

> and we actually met last year at a Fuchs' symposium in Durham, NC.

> When I found out she had RA, I told her about this group.

>

> Roselyn, I've never been on Plaquenil, so I can't help you with that.

> My advice is to be the squeaky wheel that gets the grease; in other

> words, keep complaining to your rheumatologist that you are having

> pain and nausea. Make sure that he treats your RA aggressively, so

> that hopefully joint damage will not occur. RA does tend to progress,

> and it might be that he needs to pull out the heavy guns, such as

> methotrexate, a tried and true med that has been used successfully for

> many years for RA. The thinking these days is to treat it aggressively

> from the beginning.

>

> And, yes, I think you should go ahead and retire. It's nice to be able

> to do what you want to do.

>

> Sue

>

>