Re: Re: PA-Methotrexate

[Guest guest]

Surely you realize there is not a single medicine, chemical, natural or

biologic that doesn't come with some sort of risk or side effect for " some "

people . Even aspirin is dangerous to some people. There are certain herbs

that

aren't tolerated by all people. If you are in enough pain and are afraid of

being crippled up in a wheelchair or not able to brush your own teeth, then

you take your chances. None of us goes on this journey alone. We have

regular check ups and blood work done to determine how our body inside is

tolerating it as compared to the loss of pain and added mobility on the

outside. When

I noticed one wrist disformed, I decided I didn't want both of them

unusable. Only the medications and a miracle from God is going to grant you

any

peace from this disease, if it is indeed what you have. It would seem to me

that

you may never get a true dx without your co-operation and trust in your

doctors. As I said before, I would listen to Kathy F., she has been a really

big

help to me many times in the few months I have been on this post. God Bless

you,

Janet in Ca

[Guest guest]

Kathy .,I am a registered nurse and was misdiagnosed and mistreated by some

of the best doctors in boston. They were basically' winging it' going from

one medication to another and because of the initial misdiagnosis these guys

did not want to go against each other . I did what they told me and

questioned it but nevertheless I ended up with liver damage from methotrexate

and

arava. And got no pain medication from anyone ever [yes I suffered]. after 7

years they did xrays found my hips fused . I had repeatedly told 3

rheumatologists how much pain I was in . and birth defect of right hip . i had

3 hip

replacements[right hip twice] because of their incompetence . I being an r.n.

questioned all of them but they basically told me 'not to worry " we know what

we're doing . yeah right . ask questions and then do what you think is best

for you . You can only make an educated guess because these doctors don " t know

enough about the disease. cathy from ma

[Editor's Note: I agree, . We must take charge of our own destinies. I

was misdiagnosed from 1965 (when I was 16) until 2002. Kathy F.]

[Guest guest]

I can certainly understand not wanting to take MTX. I

don't. I enjoy my wine with dinner, beer while

sailing, etc. Not going to give that up if I don't

absolutely have to.

Luckily, my rheumatologist and dermatologist are

completely on board with this. My derm doesn't even

really like to prescribe MTX -- she will for a while

if someone's insurance requires it, but her goal is to

move you to something less intrusive on your life.

[Editor's Note: If booze is more important than medication, you don't yet have

a very severe case of PA. Good for you, and I mean that sincerely. We had to

sell our sailboat several years ago - I could no longer get in or out of it!

When that happens to you, you might feel that meds are more important than

liquor. RStone certainly described himself as bedridden, unable to work and

unable to take care of himself in some ways. That probably means that you and

he are in very different stages of the disease. Kathy F.]

--- rstone115 <rstone115@...> wrote:

> (re: editors note)

> I think you really missed the point of my post. I

> was only officially

> diagnosed with PA 2 weeks ago. It took me almost a

> year to fight my way

> through the county medical sysytem to get a referal

> to a

> rheumatologist. Then after all of my efforts I am

> given a medication

> that " I am afraid to take " I have fear! I have

> questions about whether

> or not this is the best medicine for me or the

> cheapest. I used the

> term nasty simply because to me it seems so, due to

> my fear of the list

> of side efects. I never ment to offend. I feel your

> reply to my post

> was very negative and it is not at all what I

> expected from

> this " support forum " and especially from an editor

> whose job it is to

> set the tone for future discussion. At least I know

> where I stand in

> this, alone. How unusual.

>

>

> [Editor's Note: If the tone seemed harsh it is

> because I don't understand how one can be in

> self-described agony for 3 years, be completely

> bedridden and placed on disability without getting

> some sort of diagnosis that would have included

> taking strong medications as treatment - even if it

> was the wrong diagnosis. What were you diagnosed

> with that led to your being placed on disability?

> What medications were you on after being diagnosed

> incorrectly? Why is it thought that original

> diagnosis was wrong and the PA diagnosis is right?

> I apologize if you took offense at the tone, but you

> described yourself as extremely far gone for you not

> to have already been diagnosed with SOMETHING that

> would have called for you to be on strong

> medications already. I therefore could not

> understand why MTX would scare you when your other

> medications apparently did not.

>

> MTX is one of the oldest and most successful

> medications used to treat PA. It has been used for

> over 20 years and for some people it is a miracle

> drug. Many insurance companies require you to try

> and fail on MTX before they will approve you for

> stronger drugs. I don't know if that is also true

> for Medicaid. Yes, MTX has side effects in SOME

> people, but many people experience little or mild

> side effects only while reaping considerable

> benefit. Kathy F.]

>

>

>

>

>

__________________________________________________

[Guest guest]

Yes, MTX has side effects in SOME people, but many people experience little or

mild side effects only while reaping considerable benefit. Kathy F

I reap the rewards... I have the methotrexate now for over a year, humira just

started a few months ago, and Sulfasalazine... They are all helping me with the

spots, blotches or what ever the scabs are called... I hated those, and I had

them all over my stumich, legs, knee's, elbows, feet, buttocks ect... I am still

having some in the curves of my legs inside, but it is a GRAND improvement since

I was diagnosed and put on a lot of these meds... I agree, it out weighs the

side effects...

Love and Peace Always

Shaun and Barb

[Guest guest]

You know I was in two car wrecks like in one week <neither my fault> and I

always thought that was the pain that caused the onset of arthritis, and back

spurs... When I found my rheumy he said a lot could have been caused by early

onset of PA... Not that the accidents didn't do some damage, I was in therapy

for some time... But with not being diagnosed with the Pa, I probably just

assumed it was located with the accidents... I always had skin problems, that I

thought were just sensitive skin... I am very blondish, and took on most the

Irish look in my families ancestry... I am also German, dutch, swede, blackfoot

indian... But I am very pale, and white skinned with tons of freckles... So, I

might not have noticed all that... Go figure lol...

Love and Peace Always

Shaun and Barb

[Guest guest]

>If booze is more important than

> medication, you don't yet have a very severe case of

> PA. Good for you, and I mean that sincerely. We

> had to sell our sailboat several years ago - I could

> no longer get in or out of it!

Not exactly. I wanted to go for the meds that

required the least alteration in my life that would

work for my fairly disabling PA (and very bad case of

palmar plantar pustular psoriasis, which had me on

disability for several months last year). MTX was not

that med. In addition to the booze issue, it can

cause horrible photosensitivity, which would be a

realy problem for me, as I spend every minute I can on

our boat, outside, in the sun. It's been used for a

long time, yes, but we now have other options. I'll

explore those before I use something that's going to

require me to change my life even more than this

disease already has.

As I mentioned in my previous email, my doctors don't

really consider MTX as a first line med unless they're

required to for financial reasons. My rheumatologist

likes to use sulfasalazine with biologics, and that's

worked extremely well for my joints. My skin's been a

tougher row to hoe, and we're looking at Remicade if

2x/week Enbrel doesn't result in some improvement in a

couple of months.

I'm sorry you had to sell your boat -- we lived on

ours for several years, but moved into an apartment

when we moved to WA. I drive more than pull strings

now, but still enjoy sailing, and hope I'm able to for

a long time.

I really feel for people who are forced by their

medical coverage (or lack thereof) to try treatments

they don't think are appropriate/consistent with their

lifestyle when there may well be something more better

out there for them and their own unique personal

situation.

__________________________________________________

[Guest guest]

If I've learned anything from this group, it is that the best thing you can do

for yourself is to be educated about this disease and its treatment. For a lot

of us, this group is our best source of education, but it shouldn't be our only

source. We are all at different stages of the disease so we run the gamut from

Kathy who has suffered a long time and is very experienced to the way I was 4

years ago which was completely uneducated and terrified of all of the meds.

When I look at how my perspective has evolved over 4 years, it's pretty

radically different.

If you are new to PA and want more info, here are some sources that I find very

helpful in addition to the great people on this board and my doctors:

-National Psoriasis Foundation

-Arthritis Foundation

-National Organization of Rare Disorders

-American Autoimmune Disease Association

(all of the above have regular newsletters or mags which always have the latest,

greatest info)

-a book called " Why Zebras don't get Ulcers " that has a great chapter on

autoimmune disease and its relationship to stress

-a recent website I found called ChronicBabe which is geared toward younger

women with chronic illnesses and how to try to not turn into an 80year old even

though you sometimes feel like one...

Re: [ ] Re: PA-Methotrexate

.. I being an r.n.

questioned all of them but they basically told me 'not to worry " we know what

we're doing . yeah right . ask questions and then do what you think is best

for you . You can only make an educated guess because these doctors don " t know

enough about the disease. cathy from ma

[Editor's Note: I agree, . We must take charge of our own destinies. I was

misdiagnosed from 1965 (when I was 16) until 2002. Kathy F.]

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[Guest guest]

AMEN CATHY, AMEN!!

I could not agree with you more. Too bad those doctors who consider

themselves arthritis specialists couldn't experience first hand what it's like.

Janet in Ca

[Guest guest]

hope he is okay . I think my 28 year old daughter has it . But I hope not.

cathy

[Guest guest]

can't really clean my house or do my laundry. When I go to the grocery store I

have to buy little things that I know I can carry in myself and without making

more than one trip because a second trip is too much to contemplate.

Check with your local nurses aid and helpers place... They will usually cover

cost of someone coming to your house, doing laundry, shopping, cleaning? They

don't always do a great job on cleaning, but they do it... You either pay only

$2o.oo or lower to have them help, and sometimes it is free depending on what

your medicaid with cover... You give them the list, they do the major big

shopping or less, and you wont end up doing it... Plus, they will in some of the

time clean for you, showers, furniture, laundry, dishes, vacuuming... Check

into it... They can span it out two times a month ect, what ever your needs

are... Just a thought...

Love and Peace Always

Shaun and Barb

[Guest guest]

because after having filed for SSDI almost a year ago I have yet to have a final

determination. My state disability is going to run out soon so, I am feeling

depressed again, not knowing if I will be homeless or forced to go back to the

ways things were a year ago, trying to hold down a job and deal with all this

pain.

Also, check into legal aid for those that cant afford lawyers? I did that and

with in a month they approved my claim... It sometimes pushes them to just

approve as they don't like going to court... Especially when they know they will

lose if your having health issues and YOUR dr. was the one that asked for you to

go on it...

Love and Peace Always

Shaun and Barb