Re: Newly Diagnosed ~ Introduction

[Guest guest]

Hi Connie and welcome to the group.

I don't take either of the medications that you are asking about. I

have taken prednisone in the past but as it only makes me gain

weight the doctor and I have decided it isn't the med for me.

As far as working with my RA, I don't. I am retired from the Air

Force with an 80% disability rating and a 100% rating as

unemployable. My feet, ankles and caves hurt quite a bit so I like

you am unable to stand for great lengths of time. I have to sit

down quite often to rest my legs and put them up. I have

degenerative disc disease that has execelerated do to my RA and have

had to have 2 discs in my neck replaced (they just seem to want to

rupture). I have quite a bit of pain in my hands - and shoulders

plus lower back also.

I would say that if you enjoy your job you can put up with almost

anything. I love to quilt and although it is very painful for me I

still do it. I love to garden and do it in short stints...although

the flowers wish I would get all the weeds out quicker...

I do things at my pace.

I wish you that best of luck with finding the right mixture of drugs

to help you sustain your quality of life.

God bless,

Althea

[Guest guest]

Welcome Connie, I am sorry to hear your in so much pain. I have

never taken Plaquinil, so I can't help there. I hope that between

the two meds, you will feel better soon. Do you have a rheumy?

I am on disability, and there is no way I can work. I know how hard

it is for you to work, and in severe pain. I will keep you on my

prayer list for better days, Tawny

> Hi everyone!

>

> My name is Connie and I am new to the group. I just

> received my diagnosis yesterday and it was kind of a

> mixed blessing. I was told that I probably had Lupus,

> but the results of my blood tests and rheumatology

> visit indicate that I have RA and not SLE.

>

> I have MUCH pain in my feet and ankles and can't spend

> more than about 1 hr on my feet without having to sit

> and take pain meds. Needless to say thats a real pain

> in the butt! My hands and wrists also give me

> problems but not as severe. I also have pain and

> tenderness in my knees and lower back. The back pain

> gets quite severe at times, especially if I try to lay

> on my back.

>

> I have several other auto-immune diseases including

> Myasthenia Gravis, Asthma, thyroid disease, and a

> bleeding disorder that is autoimmune in nature.

>

> I was on high dose prednisone for several years for

> treatment of the myasthenia, but have been off totally

> since late March. Yesterday I was restarted on the

> prednisone (10mg daily for now) and started on 400mg

> daily of Plaquinil. I've never taken this med before

> and would appreciate if someone could share what to

> expect with it. I have read so many things in the

> past 18 hrs that my head is spinning.

>

> I'm also interested in hearing how RA has affected

> your ability to work. I am a respiratory therapist

> and have already had to drastically reduce my work

> schedule due to the myasthenia. I love my job and

> would hate to have to leave it, but I don't know how

> much more accomodating my employer is willing to be.

>

> Thanks for being available and I look forward to

> getting to know you all!

>

> Connie- Michigan

>

> __________________________________________________

>

[Guest guest]

Hi Connie and Welcome to the Group:

Sorry to hear about your pain..........I have been on

Plaquenil for a year now.....no side effects for me

and for the time being it is keeping the RA under

control. I also take 5 mg of Prednisone

daily..........I also have Fibro and am taking Zanex

at night to help with sleep. Rheumy also started me

on Mirapex to help with sleeping as he said eventually

it will help the fatigue and I am all for that. I

work full time as a legal assistant and some days it

is all I can do to drag myself out of bed and into the

office...........There are some days that no matter

how much sleep I get, I wake up tired.........and on

and on!!!!

Hang in there.........what kind of work do you do???

Hopefully your employer will be understanding and help

you get through it.........do you take any pain meds

at all? They all seem to work differently on

everyone. I take Darvocet as needed and have for

years.........some days it helps.........other days it

does nothing.............

Will keep you on our prayer list and again welcome to

the group.............they are a great bunch of people

Pat in So. Ore.

- Connie <c_s_g57@...> wrote:

> Hi everyone!

>

> My name is Connie and I am new to the group. I just

> received my diagnosis yesterday and it was kind of a

> mixed blessing. I was told that I probably had

> Lupus,

> but the results of my blood tests and rheumatology

> visit indicate that I have RA and not SLE.

>

> I have MUCH pain in my feet and ankles and can't

> spend

> more than about 1 hr on my feet without having to

> sit

> and take pain meds. Needless to say thats a real

> pain

> in the butt! My hands and wrists also give me

> problems but not as severe. I also have pain and

> tenderness in my knees and lower back. The back

> pain

> gets quite severe at times, especially if I try to

> lay

> on my back.

>

> I have several other auto-immune diseases including

> Myasthenia Gravis, Asthma, thyroid disease, and a

> bleeding disorder that is autoimmune in nature.

>

> I was on high dose prednisone for several years for

> treatment of the myasthenia, but have been off

> totally

> since late March. Yesterday I was restarted on the

> prednisone (10mg daily for now) and started on 400mg

> daily of Plaquinil. I've never taken this med

> before

> and would appreciate if someone could share what to

> expect with it. I have read so many things in the

> past 18 hrs that my head is spinning.

>

> I'm also interested in hearing how RA has affected

> your ability to work. I am a respiratory therapist

> and have already had to drastically reduce my work

> schedule due to the myasthenia. I love my job and

> would hate to have to leave it, but I don't know how

> much more accomodating my employer is willing to be.

>

> Thanks for being available and I look forward to

> getting to know you all!

>

> Connie- Michigan

>

> __________________________________________________

>

[Guest guest]

Hi, Connie. Sorry to hear about your dx, but I know what you mean

about the " mixed blessing. " Sometimes it seems worse not knowing

what's wrong. I have been taken Plaquinel for about seven months

now, same dosage as you. It takes a while to kick in, but I have

had no side effects at all. I also take a low dose of mtx, which

seems to work well with the Plaquinel for me (no side effects there,

either). I'm taking 5mg Prednisone too, but since the other meds

kicked in, I'm having really minimum pain so I'm hoping to cut back

there.

Just a few months ago, I was having quite a bit of pain in my knees,

feet, and hands, and I was also worried about my ability to continue

working. I'm a computer engineer, so I don't normally stand a lot.

My problem was the opposite...if I sat down for more than 15, 20

minutes, my knees would lock up and I would have a hard time

walking. But, like I said, the meds have helped tremendously, so

for the moment at least, I'm feeling more optimistic. Hopefully

you'll do well with the Plaquinel, too. Just hang in there.

> Hi everyone!

>

> My name is Connie and I am new to the group. I just

> received my diagnosis yesterday and it was kind of a

> mixed blessing. I was told that I probably had Lupus,

> but the results of my blood tests and rheumatology

> visit indicate that I have RA and not SLE.

>

> I have MUCH pain in my feet and ankles and can't spend

> more than about 1 hr on my feet without having to sit

> and take pain meds. Needless to say thats a real pain

> in the butt! My hands and wrists also give me

> problems but not as severe. I also have pain and

> tenderness in my knees and lower back. The back pain

> gets quite severe at times, especially if I try to lay

> on my back.

>

> I have several other auto-immune diseases including

> Myasthenia Gravis, Asthma, thyroid disease, and a

> bleeding disorder that is autoimmune in nature.

>

> I was on high dose prednisone for several years for

> treatment of the myasthenia, but have been off totally

> since late March. Yesterday I was restarted on the

> prednisone (10mg daily for now) and started on 400mg

> daily of Plaquinil. I've never taken this med before

> and would appreciate if someone could share what to

> expect with it. I have read so many things in the

> past 18 hrs that my head is spinning.

>

> I'm also interested in hearing how RA has affected

> your ability to work. I am a respiratory therapist

> and have already had to drastically reduce my work

> schedule due to the myasthenia. I love my job and

> would hate to have to leave it, but I don't know how

> much more accomodating my employer is willing to be.

>

> Thanks for being available and I look forward to

> getting to know you all!

>

> Connie- Michigan

>

> __________________________________________________

>

[Guest guest]

Welcome Connie. I'll give you my quick scoop on RA. I'm 33 and work

as an accountant, have a 4 year old, am about to be divorced and I've

had RA for a year. My feeling is that if your going to have RA, at

least get it now when there are lots of drugs available to treat it.

My mom got it when I was in junior high, and she was on aspirin and

other stuff that did nothing for RA for years and years. The result

is she is now disfigured and disabled. That does not have to be the

case today for someone who 1) had a good rheumy and 2) treats the RA

agressively with drugs.

I started on prednisone, never more than 7.5 mgs daily and I am now

in the process of weaning off (down to 2mgs now). When I was

officially diagnosed (9 months after symptoms started) I started on

mtx and worked up to 17.5 mgs weekly (pills). Last December the

mtx/prednisone combo was not cutting it (common for drugs you were on

to not work as well becaues RA is a progressive disease) so we added

Humira (injections, one every other week). Humira is one of the

biological drugs that can slow the progression of the disease. It

was my main goal once I got RA to get on one of the biological

drugs.

The only problem I have had with my drugs so far is serious bone loss

caused by prednisone (low dose for a year, not common to have bone

loss but I guess I'm just not as lucky as I thought). If I were you,

I would take 1500 mgs of calcim a day (taken three times per day in

500 mgs each so you can absorb it) and do weight bearing exercise to

ensure you are replacing bone. I can't take Fosamax because it's

only for post-menapausal. I've never taken any pain killers for my

RA, but I have had days where I was totally disabled from it. Those

are the days I went directly to my rheumy's office and we got on a

new medication.

As far as working, the key is to get the RA under control with

medication. Then, figure out how to integrate having RA into your

life (dealing with fatigue, etc.). I can't stand on my feet one hour

either, and my RA is very much under control. It's just one of the

things I can't do. I can lift weights at the gym and do all kinds of

phyical activities, but not standing. One thing about RA is that

it's worse in the mornings. Sometimes starting your day a little

later helps. I have given up on getting to work early, I just can't

do it. I also quit my previous job as an auditor because I couldn't

work crazy hours any more, nor could I carry my audit stuff from

client to cleint. The other key is that once things are under

control with meds, and you've made whatever adjustments to your life

that you need to make, then don't over do it. Over doing it as in

once I tried to walk with my friends in a breast cancer walkathon -

it was a bad idea... over doing it can cause your RA to flare up and

then you will be able to do less and you may have a harder time

getting back to " under control. " I am not sure what your current job

entails, but I do think you can keep working if you are creative in

integrating having this disease into your life.

Welcome again to the group.

Jennie

> Hi everyone!

>

> My name is Connie and I am new to the group. I just

> received my diagnosis yesterday and it was kind of a

> mixed blessing. I was told that I probably had Lupus,

> but the results of my blood tests and rheumatology

> visit indicate that I have RA and not SLE.

>

> I have MUCH pain in my feet and ankles and can't spend

> more than about 1 hr on my feet without having to sit

> and take pain meds. Needless to say thats a real pain

> in the butt! My hands and wrists also give me

> problems but not as severe. I also have pain and

> tenderness in my knees and lower back. The back pain

> gets quite severe at times, especially if I try to lay

> on my back.

>

> I have several other auto-immune diseases including

> Myasthenia Gravis, Asthma, thyroid disease, and a

> bleeding disorder that is autoimmune in nature.

>

> I was on high dose prednisone for several years for

> treatment of the myasthenia, but have been off totally

> since late March. Yesterday I was restarted on the

> prednisone (10mg daily for now) and started on 400mg

> daily of Plaquinil. I've never taken this med before

> and would appreciate if someone could share what to

> expect with it. I have read so many things in the

> past 18 hrs that my head is spinning.

>

> I'm also interested in hearing how RA has affected

> your ability to work. I am a respiratory therapist

> and have already had to drastically reduce my work

> schedule due to the myasthenia. I love my job and

> would hate to have to leave it, but I don't know how

> much more accomodating my employer is willing to be.

>

> Thanks for being available and I look forward to

> getting to know you all!

>

> Connie- Michigan

>

> __________________________________________________

>

[Guest guest]

> Hi everyone!

>

Hi Connie,

Welcome to the group!

I don't have RA, but a mixed bag of autoimmune disorders, including

Dercum's Disease, FM, and a newly-discovered thyroid disorder that I

am waiting for a diagnosis on. I can't take prednisone because it

makes the lipomas from the Dercum's disease grow bigger and more

rapidly. I'm currently going through the 2nd stage in the process of

waiting for disability approval; in my " other life " I was an

administrative assistant. Now I am a 58-year old wife and

grandmother who enjoys spending time with my husband (who has

Parkinson's disease, but it's hard to tell) and grandchildren--a 4-

year old boy and 17-month old triplets.

I had planned to retire anyway, but I had planned on an active

retirement, not one that involved a lot of lying around or running to

different doctors and enduring painful surgeries. But this is the

hand that was dealt me, so I'll make the best of it. As my daughter

says, " when life deals you lemons...put them in your bra and have big

b**bs! "

Judi