Re: New Here...an introduction

August 5, 2006

Hi . I'm 45 yrs old, 5 ft 3 and about 115 lbs. Weight is not a

factor for me...I'm just telling you this so that when you lose your

weight, you will not be too surprised if the symptoms do not go away. It

will of course be healthier for you but PA, RA and P don't care what you

weigh. The fibro could be fatigue from PA or RA...I'm not sure of course

but you never can tell. I'm also not sure if it matters what is causing

the fatigue as long as it's treated in a way that is helpful to you. I

certainly understand about the MXT. Many of us on here successfully take

meds that do not work for others on here. It's just different for every

one of us. Reading the post will help you sort out what MIGHT work for

you and give you a better understanding of the " language " of the disease

which will in turn make you feel more confident when you talk to your

Rhuemy. This group is encouraging, caring and informed (thanks to all

the sharing we do). It's a safe haven. You have some serious conditions.

You will have to take some serious meds. You are not crazy to wish you

did not have to take them. These are progressive diseases though. That

we can't control. You will begin to discover many things that you CAN

control though as you journey through this thing. You'll have a grand

opportunity to SHOW, rather than TELL your children how to face

adversity. As a Home Schooling Mom, I'm sure you are one who is aware of

the many things other than academics that our children must be taught in

order to succeed in this world no matter what profession or path they

chose. We PA Moms get to be special and demonstrate first hand how to be

strong and courageous and how to NEVER GIVE UP. The sooner you can

manage to see it this way, the sooner it will begin to get easier for

you to deal with it yourself if you are like me. I have one daughter,

, 11 and she has high functioning autism, OCD and Mood Disorder.

She and I have both had to learn how to sculpt our lives around our

diseases and disorders. My having PA has given me a better understanding

of how she feels at times. I take Enbrel and it changed my life. I did

not even know how fatigued I was until the Enbrel kicked in. I think the

fatigue got me long before the joint pain and P did but it was my way of

life....I knew nothing different and I guess I got used to it. I am

LOVING having my old energy back. I could not walk a few months ago and

wondered if I'd just be crippled for the rest of my life. I hate that

word but someone I had not seen in a few months saw me yesterday and she

was floored that I was running around like nothing was wrong with me

after seeing me last when I was scooting along...crippled was the word

she used. Miracle was the next word she used. I like that word. Be

afraid of getting worse if you don't take the medications that have been

developed in recent years. Don't be afraid of feeling like you never

thought you'd ever feel again. This is not an inconvenience....this is a

serious disease. I'm sorry you have to deal with all of this but glad

that you are here. This is a good place. We will do our best to help you

along. -Betz

>

> I am , 46 yo, married with two teens that I homeschool. I'll try

> to make the intro brief.

>

> I was diagnosed with RA at 18 and psoriasis at 21. Until last year, no

> rheumy I've ever seen (at least 5) told me that the 2 are related. I

> was also diagnosed with fibromyalgia at 28. I don't feel like I am

> having many complications but the doc wants me to start Remicade. I do

> have severe changes in my wrists and fingers but I am still

functioning

> quite well. I have a patch of psoriasis on my lower right leg that is

> slowly healing with topical meds. I also have low thyroid (which was

> diagosed about a year ago) and take a supplement for that. And I am

> currently about 75 lbs overweight (gained about 50 in the past 7 years

> due to incredible emotional stress, those peri-menopause years and no

> knowledge of the thyroid condition).

>

> I guess I looking to find out more about PA. I do not want to take

> Remicade or any of the heavy-duty meds if I can help it. Methotrexate

> killed my mother (no exaggeration...she got pulmonary fibrosis from it

> and died) so I cannot take that. I, personally, think that my

> concentration should be on losing weight which would take a lot of

> stress off my joints and give me a better idea of what kind of trouble

> I am really having. I am doing Weight Watchers now and have lost some

> weight and I am determined to get this weight off, no matter low long

> it takes. I am very drug-sensitive and have weird reactions which is

> another reason I am not anxious to start Rem or the other meds.

>

> Am I crazy to think I can stay away from these meds?

>

> That's all for now.

>

August 6, 2006

Hi -

I understand your feeling. From my experience most of

the people in this group are on either one or more of

the drugs out there.

I am kind of with you on the not taking anything. I

was diagnosed about 2 years ago. Just these past weeks

I finally relented and am trying Plaquinel. All I can

say is.... Im fairly skinny (5'9'' 130 lbs) and my

Thyroid hasn't worked in years. Personally I don't

think weight matters- I still feel the pain and

fatigue. Luckily I am a stay at home mom- and I don't

have to work. On my husbands off days I will sleep in

until 11-12 pm.....and that has worked miracles for

me.

I have tried almost every 'natural' approach....from

vitamines, to cat/devils claw.....Acupuncture,

cupping, TENS,....to no avail.

I went to see my OBGYN 2 weeks ago and told her my

Rheumy thinks I should be more 'aggressive' he wants

me on the remicade...humira...etc. Her eyes bugged

out...and while telling me she is No Rheumatologist

she also infatically said she would not do those meds.

Kind of confirming my fears.

So- here I am. I read every day the notes everyone

write about their experiences w/ these drugs I am so

afraid to take. I guess I am buying time.

I know the day will come when I will have to do

something else to avoid becoming disfigured...but, at

this point Im content waiting until I have to take

that step.

Being a nurse I always totally believed in

conventional medicine until it happened to me. I plan

On switching insurances and going to a Dr. Mease (who

I am told is a leading expert in PA).

I do know one thing....and I think everyone in this

group can agree too...Lots of rest (if possible) and

NEVER over do yourself....

Also...my PA flares up with stress...Just a few months

ago my mom had a bad stroke...family was broken on 'to

put feeding tube...or not to...' kind of the Schiavo

type nightmare. Well, she got the tube and died 8

weeks later...tough time.

I'd be better off with a stress free life.

Good luck....you'll figure out what is right for

you...

God Bless.

Tricia

(Editor's Note: I would not want my rheumy telling what to do about my ovaries

and I wouldn't want my OB GYN telling me what to do about my PA. PA is a

PROGRESSIVE disease which will continue its march through your body if left

untreated. Ignoring it doesn't make it go away. Many of the meds you disparage

have been shown to slow down the progression of the disease even when they don't

ease the immediate symptoms. Taking medications is a personal decision, of

course, but at some point you may fear what the disease is doing to you more

than you fear the medication. Many of us rue our decisions not to take meds

earlier as we now have to spend the rest of our lives living with irreversible

joint damage that might have been preventable by taking these meds sooner. Kathy

F. )

August 6, 2006

In a message dated 8/6/2006 8:17:47 A.M. Eastern Standard Time,

itsbetsy@... writes:

Hi . I'm 45 yrs old, 5 ft 3 and about 115 lbs. Weight is not a

factor for me...I'm just telling you this so that when you lose your

weight, you will not be too surprised if the symptoms do not go away.

I don't for one minute believe that losing weight will put this into

remission but the weight is causing lots of problems for me besides being

unattractive. My blood pressure is up (for me), I believe I am having glucose

intolerance problems and I know that the extra weight is straining my joints.

You have some serious conditions.

You will have to take some serious meds.

People go into remission. My mom did for years. She also came out

remission and had to take something...MTX. I have a very sensitive body and

I have

odd reactions to all kinds of meds. I have entire drug classes (like

anti-depressants) that I cannot take because of the reactions. I also don't

want

to take one of these meds and have a long-lasting worse-than-PA/RA side

effect either.

Be

afraid of getting worse if you don't take the medications that have been

developed in recent years. Don't be afraid of feeling like you never

thought you'd ever feel again.

I am afraid of getting worse...I am also afraid of the outcome of taking

these meds.

This is not an inconvenience....this is a

serious disease.

Don't I know it. My mom became crippled almost overnight in 1964 with

arthritis. I was 4. They gave her every med they had and nothing stopped the

crippling effect. She had both knees replaced, also. Eventually, the doc

suggested MTX, something new. She read all the literature and she was willing

to

try it. It gave her 10 years of help. But it also gave her pulmonary

fibrosis, which she died from 14 weeks after the diagnosis. I don't know if

she

regrets taking the MTX or not...she was too sick to ask. I also have a cousin

with RA who took MTX and got pulmonary fibrosis. Thankfully hers was a

treatable form and she finally recovered. The docs will not give me MTX, for

obvious reasons.

I'm sorry you have to deal with all of this but glad

that you are here. This is a good place. We will do our best to help you

along. -Betz

I have been through an emotional/mental/physical roller coaster for the past

7+ years (I won't bore you with the details). I am getting off the ride and

trying to get control of my life. I appreciate the insight of those who are

also dealing with PA.

Thanks,

August 6, 2006

Kathy makes a very important point here. I was also one who thought I

would try to get by on as little med as possible for as long as

possible. Two things changed my mind - first the pain progressed

rapidly for me to the point that I would have taken street drugs if

necessary to get some relief. And second, I googled " psoriatic

arthritis " in Google images and got a good look at what could happen

to me if I didn't get some serious treatment for the disease and not

just the symptoms.

One thing I'm sure of - my rheumy is keeping a close eye on things.

Also I'm informed enough to be aware of any signs of serious damage

being done by the drugs, such as yellowed skin or eyes indicating a

problem with the liver. Or difficulty breathing or chest pain

indicating a lung problem. Or blurry vision indicating eye damage. I

think that minimizes the risk somehwat also.

As Kathy says, it's an individual decision. I'm just giving you the

perspective of a person who thought like you not so long ago. Hoping

to give you additional ways of thinking about the decision.

best regards,

sherry z

>

> (Editor's Note: I would not want my rheumy telling what to do about

my ovaries and I wouldn't want my OB GYN telling me what to do about

my PA. PA is a PROGRESSIVE disease which will continue its march

through your body if left untreated. Ignoring it doesn't make it go

away. Many of the meds you disparage have been shown to slow down the

progression of the disease even when they don't ease the immediate

symptoms. Taking medications is a personal decision, of course, but at

some point you may fear what the disease is doing to you more than you

fear the medication. Many of us rue our decisions not to take meds

earlier as we now have to spend the rest of our lives living with

irreversible joint damage that might have been preventable by taking

these meds sooner. Kathy F. )

>

August 6, 2006

Tricia...I'm so sorry for what you had to endure with your Mom and sorry

for your loss. Yes...we'd all do better with less stress but life does

not seem to know that we need a break and it marches on in spite of our

PA. I have to tell you that those of us who are on the medications we

are on do it because we were worse off without them. I am baffled by

those who don't understand that this is not an inconvenience any more

than cancer or diabetes is. I have to agree with Kathy as far as letting

your OBGYN make treatment suggestions about PA. I agree with her about

everything she said as well and I am concerned for your well-being and

the possibility of the damage that may be occuring to your body right

now. A great deal of funding and research has gone into creating these

drugs that give us a chance at productive, less stressful lives. I for

one am thankful to all of those who have made their life's work

developing medications that have helped so many people thrive rather

than just survive. I hope I'm not offending you or making you feel

uncomfortable. I like to encourage and make everyone on here feel

hopeful and cared for. But it breaks my heart to see you so fearful and

I pray that you gain the courage to move on into treatment of your

disease. Forgive me for " fussing " at you. Believe me...I don't have time

to do this but I feel it's important. -Betz

>

> Hi -

>

> I understand your feeling. From my experience most of

> the people in this group are on either one or more of

> the drugs out there.

> I am kind of with you on the not taking anything. I

> was diagnosed about 2 years ago. Just these past weeks

> I finally relented and am trying Plaquinel. All I can

> say is.... Im fairly skinny (5'9'' 130 lbs) and my

> Thyroid hasn't worked in years. Personally I don't

> think weight matters- I still feel the pain and

> fatigue. Luckily I am a stay at home mom- and I don't

> have to work. On my husbands off days I will sleep in

> until 11-12 pm.....and that has worked miracles for

> me.

> I have tried almost every 'natural' approach....from

> vitamines, to cat/devils claw.....Acupuncture,

> cupping, TENS,....to no avail.

> I went to see my OBGYN 2 weeks ago and told her my

> Rheumy thinks I should be more 'aggressive' he wants

> me on the remicade...humira...etc. Her eyes bugged

> out...and while telling me she is No Rheumatologist

> she also infatically said she would not do those meds.

> Kind of confirming my fears.

> So- here I am. I read every day the notes everyone

> write about their experiences w/ these drugs I am so

> afraid to take. I guess I am buying time.

> I know the day will come when I will have to do

> something else to avoid becoming disfigured...but, at

> this point Im content waiting until I have to take

> that step.

> Being a nurse I always totally believed in

> conventional medicine until it happened to me. I plan

> On switching insurances and going to a Dr. Mease (who

> I am told is a leading expert in PA).

> I do know one thing....and I think everyone in this

> group can agree too...Lots of rest (if possible) and

> NEVER over do yourself....

> Also...my PA flares up with stress...Just a few months

> ago my mom had a bad stroke...family was broken on 'to

> put feeding tube...or not to...' kind of the Schiavo

> type nightmare. Well, she got the tube and died 8

> weeks later...tough time.

> I'd be better off with a stress free life.

> Good luck....you'll figure out what is right for

> you...

> God Bless.

> Tricia

>

> (Editor's Note: I would not want my rheumy telling what to do about my

ovaries and I wouldn't want my OB GYN telling me what to do about my PA.

PA is a PROGRESSIVE disease which will continue its march through your

body if left untreated. Ignoring it doesn't make it go away. Many of the

meds you disparage have been shown to slow down the progression of the

disease even when they don't ease the immediate symptoms. Taking

medications is a personal decision, of course, but at some point you may

fear what the disease is doing to you more than you fear the medication.

Many of us rue our decisions not to take meds earlier as we now have to

spend the rest of our lives living with irreversible joint damage that

might have been preventable by taking these meds sooner. Kathy F. )

>

August 6, 2006

I would not take MTX with your family history. I'd be scared out of my

wits of that one. I know all about emotional roller coasters. You

wouldn't believe the life I've had. It does not even seem real sometimes

but I finally have a strong support system. I went it alone for awhile

because I did not want to " bother " people with my issues but I

discovered that they want and need to help me. You do that with people

you love. So I've come a long way and it's all going to be ok. It's ok

to share your problems on here. We do that from time to time. Our

problems effect our health so it's one in the same. Sometimes you share

something and someone else has been through it too and you gain some

insight into the problem unexpectedly. Plus...you feel a whole heck of a

lot better when you let it go. I've experienced emotional pain like you

would not believe so if you ever need to " dump " on someone, feel free to

email my personal email. And I mean that. it feels good for me to be

able to listen and maybe even help. It makes what I went through have

some purpose I suppose. I should be able to put it to some use. My heart

breaks for you just reading what you went through with your Mom. I hope

that life is going to let you rest a bit now...that's my prayer for you.

-Betz

>

> In a message dated 8/6/2006 8:17:47 A.M. Eastern Standard Time,

> itsbetsy@... writes:

>

> Hi . I'm 45 yrs old, 5 ft 3 and about 115 lbs. Weight is not a

> factor for me...I'm just telling you this so that when you lose your

> weight, you will not be too surprised if the symptoms do not go away.

> I don't for one minute believe that losing weight will put this into

> remission but the weight is causing lots of problems for me besides

being

> unattractive. My blood pressure is up (for me), I believe I am having

glucose

> intolerance problems and I know that the extra weight is straining my

joints.

>

> You have some serious conditions.

> You will have to take some serious meds.

> People go into remission. My mom did for years. She also came out

> remission and had to take something...MTX. I have a very sensitive

body and I have

> odd reactions to all kinds of meds. I have entire drug classes (like

> anti-depressants) that I cannot take because of the reactions. I also

don't want

> to take one of these meds and have a long-lasting worse-than-PA/RA

side

> effect either.

>

> Be

> afraid of getting worse if you don't take the medications that have

been

> developed in recent years. Don't be afraid of feeling like you never

> thought you'd ever feel again.

> I am afraid of getting worse...I am also afraid of the outcome of

taking

> these meds.

>

> This is not an inconvenience....this is a

> serious disease.

> Don't I know it. My mom became crippled almost overnight in 1964 with

> arthritis. I was 4. They gave her every med they had and nothing

stopped the

> crippling effect. She had both knees replaced, also. Eventually, the

doc

> suggested MTX, something new. She read all the literature and she was

willing to

> try it. It gave her 10 years of help. But it also gave her pulmonary

> fibrosis, which she died from 14 weeks after the diagnosis. I don't

know if she

> regrets taking the MTX or not...she was too sick to ask. I also have a

cousin

> with RA who took MTX and got pulmonary fibrosis. Thankfully hers was a

> treatable form and she finally recovered. The docs will not give me

MTX, for

> obvious reasons.

>

> I'm sorry you have to deal with all of this but glad

> that you are here. This is a good place. We will do our best to help

you

> along. -Betz

> I have been through an emotional/mental/physical roller coaster for

the past

> 7+ years (I won't bore you with the details). I am getting off the

ride and

> trying to get control of my life. I appreciate the insight of those

who are

> also dealing with PA.

> Thanks,

>

August 7, 2006

In a message dated 8/7/2006 9:21:14 A.M. Eastern Standard Time,

itsbetsy@... writes:

I know all about emotional roller coasters. You

wouldn't believe the life I've had. It does not even seem real sometimes

but I finally have a strong support system.

I have a good support system, too. And I have a strong faith. I don't know

how I would have gotten through things otherwise. What I told about my mom

is only the tip of the iceberg of the stuff that went on in a very short

period of time. I joked at the time that if I just came out of this wearing

the

same size pants I'd be thrilled (I eat with stress). Well, I have gained 40+

lbs and so many other unpleasant manifestations of the stress. I guess a

body can only take so much.

I went it alone for awhile

because I did not want to " bother " people with my issues but I

discovered that they want and need to help me. You do that with people

you love.

True. I think I am more willing to ask for help than a lot of people

because I grew up with a disabled mom so I have been on both sides. It's just

important to remember than people can only help if they know what kind of help

we

need...they do not read minds.

I've experienced emotional pain like you

would not believe so if you ever need to " dump " on someone, feel free to

email my personal email.

Thanks. I just might do that sometime.

My heart

breaks for you just reading what you went through with your Mom. I hope

that life is going to let you rest a bit now...that's my prayer for you.

Prayer is a good thing. I do feel that my life is starting to settle in

some ways, although it will never be the same again.

August 7, 2006

Hi ,

You aren't crazy. None of us relish taking these high powered drugs. But

when I was first put on mtx, I was REALLY READY. I had been on prednisone for

about 6 months and I was puffed up like a balloon and ready for anything

that would stop the pain and the progression of the monster taking over my

body.

I also am way overweight, I also have fibro, and all doctors tell me when I

ask for help with the weight problem, is excersize. I did Weight Watchers

years ago and gained my weight right back when I quit. I think I need a head

shrinker and maybe the rest of my body will follow suit. LOL

Welcome to our group. There is a lot of knowledge here. God Bless.

Janet in Ca

August 7, 2006

It is interesting that you would say " it will never be the same again " .

I have said that alot this year. But I too have a strong faith and when

I say that to myself, I feel God smiling at me saying " Stick with me and

it will never be the same again " . And now finally I am excited to see

what the future brings. Even if it's more " mess " , I know that with each

new problem, I encounter people I would not have otherwise encountered

and I know that I have an opportunity to reach out to them or even to

smile at them. Everything is an opportunity. Everything. I'm learning

this. -Betz

>

> In a message dated 8/7/2006 9:21:14 A.M. Eastern Standard Time,

> itsbetsy@... writes:

>

> I know all about emotional roller coasters. You

> wouldn't believe the life I've had. It does not even seem real

sometimes

> but I finally have a strong support system.

>

> I have a good support system, too. And I have a strong faith. I don't

know

> how I would have gotten through things otherwise. What I told about my

mom

> is only the tip of the iceberg of the stuff that went on in a very

short

> period of time. I joked at the time that if I just came out of this

wearing the

> same size pants I'd be thrilled (I eat with stress). Well, I have

gained 40+

> lbs and so many other unpleasant manifestations of the stress. I guess

a

> body can only take so much.

>

> I went it alone for awhile

> because I did not want to " bother " people with my issues but I

> discovered that they want and need to help me. You do that with people

> you love.

>

> True. I think I am more willing to ask for help than a lot of people

> because I grew up with a disabled mom so I have been on both sides.

It's just

> important to remember than people can only help if they know what kind

of help we

> need...they do not read minds.

>

> I've experienced emotional pain like you

> would not believe so if you ever need to " dump " on someone, feel free

to

> email my personal email.

>

> Thanks. I just might do that sometime.

>

> My heart

> breaks for you just reading what you went through with your Mom. I

hope

> that life is going to let you rest a bit now...that's my prayer for

you.

>

> Prayer is a good thing. I do feel that my life is starting to settle

in

> some ways, although it will never be the same again.

>

August 8, 2006

I am a typical yoyo dieter all my life... I am still struggling with it at age

44... I have been losing only, cause I no longer put food first and have lost

some of my appetite with some of the heavy drugs... Otherwise I am sure I would

still be heading into the 500 range lol... I wish I had a fast matabolizim like

some do that can eat what and when they want and NEVER gain an ounce... Wouldn't

that be nice? OOh well... No your not crazy either...

Love and Peace Always

Shaun and Barb

August 9, 2006

Hi Tricia...

I totally get where you are coming from with the serious meds, and I too see Dr

Mease. A few years ago on this board I sounded just like you, and we had a

member named who was the same way. For both of us, we tried EVERYTHING

we could before going to the more serious meds/biologics. I still refuse to

take MTX for lots of reasons. This is a TOTALLY personal decision, and my

advice would be to do what you are doing by talking to another doctor.

Each one of us knows when the right time is to get aggressive with this disease

for ourselves; if you need to, get additional opinions from other rheumies. One

thing I like about Mease's office is that there are some GREAT nurse

practitioners (4 of them) and while they share similar philosophies, they help

you get a range of opinions as you see different ones when you go. I have found

one of them that I think is most like me from a thought process standpoint and

will now mostly see her.

They have been very open to letting me be a part of the decisions with regard to

meds. But Dr Mease will be straight with you if he thinks you are making the

wrong decision...

So anyway, I am now on Remicade, which has given me my life back...I used my

long term disability at my last job to buy myself the time needed to test out a

lot of different options and get comfortable with the biologics.

What I would encourage you to do is if you decide NOT to go with a biologic,

make SURE you are getting annual xrays and MRIs so you joint damage can be

appropriately monitored.

Good luck, and if you (and anyone else from Seattle) every want to meet live for

a coffee or something, let me know!!!

Re: [ ] New Here...an introduction