New

[Guest guest]

Glad to know I wasn't the only one either, who cried.

Tracie B. in Texas Re: NEW

ME TOO!!

I was so embarresed that I was crying but I guess I wasn't the only one.

I feel much better now.

in TX

[Guest guest]

,

What type of fast were you on?

Thanks!

Barb

[Guest guest]

Welcome Charlene,

I personally have not taken Methotrexate before so I do not have much advice to

offer. I know there are a lot of people in this group that do take it. I was on

sulfasalizne or also called azulfidine for five years prior to starting Enbrel

then for nearly six months after wards. It has been my expeirence that getting

on something to prevent further joint and cartliage damage is your best bet. I

was dx'd with Pa at the age of 21 but suffered between ages 11 with psoriasis

and joint pain from the age of 15 and 16. Good Luck on your journey with PA.

Keli

>

> Good Morning! I have been diagnosed with Psoriatic Arthritis. I have

> been on steriods for 3 weeks to help with pain and swelling in my

> toes. I am supposed to start the Methotrexate tomorrow. I am relly

> nervous after reading all of info out there on this drug. I am 33

> yards old and I am still " reeling " from this. Neck pain started last

> night and I am worried that this is already progressing but I am alos

> wooried about starting the treatment! Is there anyone out there on

> the Methotrexate?

>

> Thanks!

> Charlene

>

[Guest guest]

Hi Charlene,

Methotrexate can be a powerful drug. That's GOOD!

In my case, 10mg per week for over 3 years has kept me almost pain free.

Before starting it, I could barely walk, had multiple sausage fingers &

toes, every movement was painful.

Yes, there is a long list of possible side effects, but did you ever

read the side of an aspirin bottle? Pretty much the same warnings.

That said, there are some folks who cannot tolerate MTX and do have

some serious problems with it. You also don't mention your age, but if

you are considering or are within child bearing age, you might want to

ask more questions BEFORE taking MTX.

MTX in the low doses taken by arthritics is very different from the

much larger doses that are used in cancer therapy.

My advice: read, ask questions, get answers. Don't do anything you

aren't comfortable with, but try not to be afraid of a drug based on

warnings. I too had concerns, but my Rheumy answered my questions and

left the decision to me. It has made a world of difference for me.

In fairness, after 3.5 years of the same dosage, I am getting a little

bit of pain back. I've talked with my Rheumy and he suggested

increasing my dosage. We agreed that this could be an upward spiral, so

I am going to hold off for now. I do feel a tad silly, by not wanting

to increase my dosage and get back to NO aches or pains, I'm not

completely ready to increase just now. Next week or next month I could

be.

Stay Well,

[Guest guest]

Hi Charlene,

I started with methotrexate a month or so ago - maybe six weeks back

come to think of it. Gradually increased dose and take every Monday.

I also take Folic Acid every Friday, which my rheumy advised can

alleviate some side-effects from the MTX. Might be worth looking at

taking Folic to, if your doctor hasn't co-prescribed? I think in my

case I have had some side-effects so far, tiredness, itchiness all

over, a few hairs fall out - but not great handfuls (yet?) - when I

comb my hair. I've toyed with the idea of stopping the MTX, or at

least waiting till I see the Rheumy again and telling him I want to

come off it, but the thing is... it does seem to be easing the joint

tightness and pain. The best advice I can offer is at least give it a

go. If any problems you get are significant or intolerable for you as

an individual weigh up the advantages against the diadvantages. It

might work great for you, with no negaive effects you can't put up

with, you wouldn't want to miss out on that I'd guess ?! Anyhow, good

luck with it all and hope you're feeling lots better soon. XX C.

[Editor's Note: , most rheumies here in the US recommend taking folic

acid daily or at least 6 days a weeks while on MTX - so your dosage sounds

really low. You might want to discuss that with him or her. Kathy F.]

[Guest guest]

,

It sounds like you are a " pro " with methotrexate. Are you currently

having any troubles finding the drug?

All my pharmacy can furnish me is the drug without preservatives and

they recommend that I use my regular dose and throw the rest of the

vial away

I also have significant burning and pain at injection site and the

pain continues awhile after removing the needle.

Just curious as to what others are coping with out there.

Thanks for any comments you might have regarding this.

Patty Parks

NW Missouri

In , " david " <david@k...> wrote:

>

> Hi Charlene,

> Methotrexate can be a powerful drug. That's GOOD!

> In my case, 10mg per week for over 3 years has kept me almost pain

free.

> Before starting it, I could barely walk, had multiple sausage

fingers &

> toes, every movement was painful.

> Yes, there is a long list of possible side effects, but did you

ever

> read the side of an aspirin bottle? Pretty much the same warnings.

> That said, there are some folks who cannot tolerate MTX and do have

> some serious problems with it. You also don't mention your age,

but if

> you are considering or are within child bearing age, you might want

to

> ask more questions BEFORE taking MTX.

> MTX in the low doses taken by arthritics is very different from the

> much larger doses that are used in cancer therapy.

> My advice: read, ask questions, get answers. Don't do anything you

> aren't comfortable with, but try not to be afraid of a drug based

on

> warnings. I too had concerns, but my Rheumy answered my questions

and

> left the decision to me. It has made a world of difference for me.

> In fairness, after 3.5 years of the same dosage, I am getting a

little

> bit of pain back. I've talked with my Rheumy and he suggested

> increasing my dosage. We agreed that this could be an upward

spiral, so

> I am going to hold off for now. I do feel a tad silly, by not

wanting

> to increase my dosage and get back to NO aches or pains, I'm not

> completely ready to increase just now. Next week or next month I

could

> be.

> Stay Well,

>

>

[Guest guest]

Hi Charlene,

Not a " Pro " by any measure, simply very fortunate that I found

something that works well for me.

I take the Tablet form, so no problems with supplies.

I'm not sure at what dosage injectable becomes more viable.

As with most things with these disease, it's mostly trial & error.

Some drugs work well for some folks, while doing nothing or worse for

others. My dosage has been stable for over 3.5 years, but I expect I

may need to increase it, as I believe the effectiveness is

deteriorating.

Time will tell.

Stay Well,

[Guest guest]

Thanks Deb. It is so hard just to sit and wait but I know that slow is what I need.

Chris

[Guest guest]

Don't push it to hard. I know it's difficult you want results quickly. And while your in it the time seems to drag forever, but later you look back and it's quick. I had a hip not a knee but I am 27 years old. I wanted to do everything right away. The key is to follow the physical therapy set out for you (every day) and take it easy when you hurt. This is one case where no pain, no gain doesn't always work. Listen and in a few weeks you will be so much better. It has only been 2 months for me but I can ride a bike and take long walks. Something I haven't done since I was 12. You can make it. Debwisewomenc <Wisewomenc@...> wrote: Hello everyone. My name is but I go by Chris. I am 43 years old and 10 days post op for a TKR right knee. I have osteo and degenetive arthritis in pretty much every joint in my body. (Though my right knee was aggrivated by an injury at work.) My surgeon only did the TKR now because my quality

of life sucked. I could not do water aerobics anymore because of the pain. I teach 2/3rd graders and am on the 3rd floor of a building without an elevator. I was beginning to miss days because I could not walk the steps. Therefore he went ahead with the surgery. It turns out that I could not have waited much longer. He said the knee was a real mess.I am using a walker to get around and wanted to know how long others used their walkers. I also can not stand for any length of time. So, I have to take showers sitting down and only when dh is home. I don't start PT until after the staples are removed on the 30th. I do have some simple bending and extension exercises to do for now.

Music Unlimited - Access over 1 million songs. Try it free.

[Guest guest]

The key is to follow the physical therapy set out for you (every day) and take it easy when you hurt. This is one case where no pain, no gain doesn't always work. >>> I agree with Deb on this one. Pushing yourself is good... but knowing your limits is much more important. Listen to your body and remember causing yourself pain can create set backs in your recovery process. Be patient it'll all fall into place just as it should~ don't think in terms of what your longing so much to do (you will in time) but think instead in terms as how very far you've already came... you don't want to throw it all away pushing yourself harder then you should.

[Guest guest]

Hello Dora:)

Thanks for replying.

Yes although the sixth of Jan, which is evaluation

date, is not that far away, for Ivan who is so eager,

it seems ages away:) We have been told that if all

goes well on evaluation, we might even be given an

approximate date for the operation. Fingers crossed:)

Mandy

--- dora_weber@... wrote:

> Hi Mandy

> So happy to hear that your hubby will soon have his

> evaluation.I know the waiting can be stressful but

> once the ball gets rolling things go pretty fast.It

> will be a great way to start the new year.

>

>

> Dora Weber

> Nucleus Volunteer Advocate

> dora_weber@...

>

> Bilateral

> N22-96

> N24C-01

> Cochlear Otosclerosis

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________

Start your day with - Make it your home page!

http://www./r/hs

[Guest guest]

Sorry, not sure what it is you are trying to do, Janice. I assumed you

were referring to the contemplated " HIV suit of Armor " project. But,

you just asked about the devices.

Our devices are all on the group page, menu on the left " photos " , check

em out.

bG

>

> Hi Bg, I'd love to try out these devices or have someone make one

for me.

>

> I'am in Toronto.

> JA

>

>

>

> ---------------------------------

> Find your next car at Canada Autos

>

>

[Guest guest]

What Amina didn't tell you (Sharon knows) is that she is writing from Kuwait. She feels like an outcast there, and says there is no help available for her, even though her sister is a doctor. She said that her sister told her she was "disabled". I hadn't seen the degree of her curve(s) before, but she did say that she uses a crutch. I'm not sure what exactly that means. She seems like a good person and is very prayerful. She may be talking about a "C" curve.

Just my two cents' worth.

Carole

[Guest guest]

Amina,

I am so glad that you came to this site! Wait and see. Many people will be writing to you!

Sincerely,

Carole

[Guest guest]

Sharon, She may have used it by mistake, but I grabbed it anyway. Poor thing! I wish she weren't so far away. She must be depressed.

I think you probably saw that my husband spent time in Kuwait when he was still working. It was when things were getting kind of messy, and I was very afraid for his well being. He had a good trip, even though others had refused to make the trip, and he liked the people very much. He even brought me some real Kuwaiti gold!

I hope our young friend stays with us. I felt so old chatting with her, and was afraid that I would lose her somehow. I may be the oldest chatter on this board, maybe except for Jim, whom we haven't heard from in ages.

I cannot stand for anyone, anywhere, to be in such pain, be it physical and emotional or both. I'm glad that you are here with us and hope that you can add that youth that she needs!

She has closed some of her posts with something like "may God heal you at my expense". I would love for God to heal us all at no one's expense. I don't think God did this to us, though. Poor thing! She's only maybe 2-1/2 years older than my oldest grandchild, Meaghan, who will be 17 this month and who has been diagnosed as bipolar. We all have our crosses, right?

Love,

Carole

[Guest guest]

Welcome, Sarwat!

(I hope you don't mind me saying your pen name on this forum. It really

helps if people have a name to call you, and sorry, but " fatal attraction "

is not a name!)

I also invited you to come join this forum, and I'm very glad you did.

Sarwat, I hope you will fill us all in on your situation, and let us be your

friends. If you want you can even post a link to your thread on Salvaged

Sisters. If you don't know how to do that, just ask me and I will do it for

you. Folks, her situation is very interesting and unusual.

Welcome to the group, Sarwat, and I hope you will enjoy your time with us.

Sharon

[ ] new

> hi dear mmebers

> carole had invited me to join here andim also a member of the salvaged

> sisters at delphi .. im 19 .. having dorso-lumbar scoliosis.. since

> 1997 .. my degree was 18 in 2002 and today its 35 .. hmm and wat

> else .. im not here seeking help .. but im here trying to help

> myself ,.. thz all ..

> tak care guys see ya arnd

>

>

>

>

>

>

>

>

> scoliosis veterans * flatback sufferers * revision candidates

>

[Guest guest]

Hey, Carole, she told you her real name? I didn't see that on Salvaged, just the pen name "Sarwat".

Way cool. Amina is a beautiful name!

I hope you'll stay and get to know the lovely people here, Amina.

Sharon

Re: [ ] new

Amina,

I am so glad that you came to this site! Wait and see. Many people will be writing to you!

Sincerely,

Carole

[Guest guest]

Absolutely, Carole. As I said on Salvaged, everyone is disabled in some way, and it is not a shame to be disabled.

I agree with you; I can't stand to see someone not getting help, when they are in such need.

Amina, I hope we aren't scaring you away. You say you do not want our help, but it is hard not to offer ideas, since they are all we have to offer (besides our support and prayers.)

Peace and healing.

Sharon

Re: [ ] new

Sharon, She may have used it by mistake, but I grabbed it anyway. Poor thing! I wish she weren't so far away. She must be depressed.

I think you probably saw that my husband spent time in Kuwait when he was still working. It was when things were getting kind of messy, and I was very afraid for his well being. He had a good trip, even though others had refused to make the trip, and he liked the people very much. He even brought me some real Kuwaiti gold!

I hope our young friend stays with us. I felt so old chatting with her, and was afraid that I would lose her somehow. I may be the oldest chatter on this board, maybe except for Jim, whom we haven't heard from in ages.

I cannot stand for anyone, anywhere, to be in such pain, be it physical and emotional or both. I'm glad that you are here with us and hope that you can add that youth that she needs!

She has closed some of her posts with something like "may God heal you at my expense". I would love for God to heal us all at no one's expense. I don't think God did this to us, though. Poor thing! She's only maybe 2-1/2 years older than my oldest grandchild, Meaghan, who will be 17 this month and who has been diagnosed as bipolar. We all have our crosses, right?

Love,

Carole

[Guest guest]

Carole -

Not to worry, because our God DIDN'T do this to us. He loves us too

much and doesn't like to see us suffering. Might it be that

revision surgery is His way of healing us here on earth? How sad

that we'll never know, but my faith is strong enough that I trust

Him completely and praise him all the more for seeing me through all

of this. In my times of desolution, I just remind myself that my

suffering is N O T H I N G in comparison to how and why His Son

suffered for us!!

~CA ~

>

> Sharon, She may have used it by mistake, but I grabbed it

anyway. Poor

> thing! I wish she weren't so far away. She must be depressed.

>

> I think you probably saw that my husband spent time in Kuwait

when he was

> still working. It was when things were getting kind of messy,

and I was very

> afraid for his well being. He had a good trip, even though

others had refused

> to make the trip, and he liked the people very much. He even

brought me

> some real Kuwaiti gold!

>

> I hope our young friend stays with us. I felt so old chatting

with her, and

> was afraid that I would lose her somehow. I may be the oldest

chatter on

> this board, maybe except for Jim, whom we haven't heard from in

ages.

>

> I cannot stand for anyone, anywhere, to be in such pain, be it

physical and

> emotional or both. I'm glad that you are here with us and hope

that you can

> add that youth that she needs!

>

> She has closed some of her posts with something like " may God

heal you at my

> expense " . I would love for God to heal us all at no one's

expense. I don't

> think God did this to us, though. Poor thing! She's only maybe

2-1/2 years

> older than my oldest grandchild, Meaghan, who will be 17 this

month and who

> has been diagnosed as bipolar. We all have our crosses, right?

>

> Love,

>

> Carole

>

[Guest guest]

hi well this si tht girl uguys are talkinabout .. hmm well let me say aumthing .. im also bipolar .. well does it matter wat haapens to me .. i just wish to make that lill difference i can make .. pain .. is just my life ..and i have accepted it now .. and i am ready to live with it .. and i shudnt have any prob living with it ..coz this is wat God has chosen for me ..although im trying to be normal .. live without any bodys support .. thaz all i think i have found the right forum for myself ,.. well yes God heal u all on my expense... coz i dunt have any reason to live <Dawg@...> wrote: Carole -Not to worry, because our God DIDN'T do this to us. He loves us too much and doesn't like to see us suffering. Might it be that revision

surgery is His way of healing us here on earth? How sad that we'll never know, but my faith is strong enough that I trust Him completely and praise him all the more for seeing me through all of this. In my times of desolution, I just remind myself that my suffering is N O T H I N G in comparison to how and why His Son suffered for us!!~CA ~>> Sharon, She may have used it by mistake, but I grabbed it anyway. Poor > thing! I wish she weren't so far away. She must be depressed.> > I think you probably saw that my husband spent time in Kuwait when he was > still working. It was when things were getting kind of messy, and I was very > afraid for his well being. He had a good trip, even though others had refused > to make the trip,

and he liked the people very much. He even brought me > some real Kuwaiti gold!> > I hope our young friend stays with us. I felt so old chatting with her, and > was afraid that I would lose her somehow. I may be the oldest chatter on > this board, maybe except for Jim, whom we haven't heard from in ages.> > I cannot stand for anyone, anywhere, to be in such pain, be it physical and > emotional or both. I'm glad that you are here with us and hope that you can > add that youth that she needs! > > She has closed some of her posts with something like "may God heal you at my > expense". I would love for God to heal us all at no one's expense. I don't > think God did this to us, though. Poor thing! She's only maybe 2-1/2 years >

older than my oldest grandchild, Meaghan, who will be 17 this month and who > has been diagnosed as bipolar. We all have our crosses, right?> > Love,> > Carole>

Relax. virus scanning helps detect nasty viruses!

[Guest guest]

hi sharon .. thnx for the warm welcome note.. God bless u dear .. and heal u .. well call me any name its ok ... and well sure u guys can always be there to tell me .. and i willl always be listening although mayb coz of study pressure i may not b able to answer every mail ... well yes dear .. my case is so .. wierd,, and the way i say is even miore wierder:) lols... well yeah frankly speakin i had attempted suicide several times but i wont attempt it again .. coz i have to live tohelp ppl live .. and wat else .. yes i have c shaped scoliosis... disc degeneration .. of L2/ L3 ... and i get nerve cramps .. futher things will be revealed wen i do my MRI on feb 15 /.. anyways ,.. take care .. and God bles u Sharon Green <sharon.green18@...> wrote: Welcome,

Sarwat!(I hope you don't mind me saying your pen name on this forum. It really helps if people have a name to call you, and sorry, but "fatal attraction" is not a name!)I also invited you to come join this forum, and I'm very glad you did.Sarwat, I hope you will fill us all in on your situation, and let us be your friends. If you want you can even post a link to your thread on Salvaged Sisters. If you don't know how to do that, just ask me and I will do it for you. Folks, her situation is very interesting and unusual.Welcome to the group, Sarwat, and I hope you will enjoy your time with us.Sharon [ ] new> hi dear mmebers> carole had invited me to join here andim also

a member of the salvaged> sisters at delphi .. im 19 .. having dorso-lumbar scoliosis.. since> 1997 .. my degree was 18 in 2002 and today its 35 .. hmm and wat> else .. im not here seeking help .. but im here trying to help> myself ,.. thz all ..> tak care guys see ya arnd>>>>>>>>> scoliosis veterans * flatback sufferers * revision candidates>

[Guest guest]

i am scared of nothing.. Except GOd ....:)Sharon Green <sharon.green18@...> wrote: Absolutely, Carole. As I said on Salvaged, everyone is disabled in some way, and it is not a shame to be disabled. I agree with you; I can't stand to see someone not getting help, when they are in such need. Amina, I hope we aren't scaring you away. You say you do not want our help, but it is hard not to offer ideas, since they are all we have to offer (besides our support and prayers.) Peace and healing. Sharon Re: [ ] new Sharon, She may have used it by mistake, but I grabbed it anyway. Poor thing! I

wish she weren't so far away. She must be depressed. I think you probably saw that my husband spent time in Kuwait when he was still working. It was when things were getting kind of messy, and I was very afraid for his well being. He had a good trip, even though others had refused to make the trip, and he liked the people very much. He even brought me some real Kuwaiti gold! I hope our young friend stays with us. I felt so old chatting with her, and was afraid that I would lose her somehow. I may be the oldest chatter on this board, maybe except for Jim, whom we haven't heard from in ages. I cannot stand for anyone, anywhere, to be in such pain, be it physical and emotional or both. I'm glad that you are here with us and hope that

you can add that youth that she needs! She has closed some of her posts with something like "may God heal you at my expense". I would love for God to heal us all at no one's expense. I don't think God did this to us, though. Poor thing! She's only maybe 2-1/2 years older than my oldest grandchild, Meaghan, who will be 17 this month and who has been diagnosed as bipolar. We all have our crosses, right? Love, Carole

Relax. virus scanning helps detect nasty viruses!

[Guest guest]

well i didnt say my real name yet to any 1.. but it makes no difference wat name im called .. i said tht before also .. ilove this name sarwat more and amina .. is name sum ppl gave me .. im also called amy.. by some.. im called baby by others.. some call me princess.some call me lovelesslove .. others.. human angel ... it make no difference to me ... at all:)Sharon Green <sharon.green18@...> wrote: Hey, Carole, she told you her real name? I didn't see that on Salvaged, just the pen name "Sarwat". Way cool. Amina is a beautiful name! I hope you'll stay and get to know the lovely people here,

Amina. Sharon Re: [ ] new Amina, I am

so glad that you came to this site! Wait and see. Many people will be writing to you! Sincerely, Carole

- Helps protect you from nasty viruses.

[Guest guest]

well i didnt say my real name yet to any 1.. but it makes no difference wat name im called .. i said tht before also .. ilove this name sarwat more and amina .. is name sum ppl gave me .. im also called amy.. by some.. im called baby by others.. some call me princess.some call me lovelesslove .. others.. human angel ... it make no difference to me ... at all:)Sharon Green <sharon.green18@...> wrote: Hey, Carole, she told you her real name? I didn't see that on Salvaged, just the pen name "Sarwat". Way cool. Amina is a beautiful name! I hope you'll stay and get to know the lovely people here,

Amina. Sharon Re: [ ] new Amina, I am

so glad that you came to this site! Wait and see. Many people will be writing to you! Sincerely, Carole

- Helps protect you from nasty viruses.

[Guest guest]

Oh, CA , I know that God didn't do this to me/us! I am a prayerful person and, unlike many people, know exactly why my back is the way it is. Mine is from trauma. I even tried to get into a study about idiopathic scoliosis and was informed that I "flunked". I don't have any family history and do have the knowledge of how it happened. Either way, I do not blame God. My meager efforts to inquire about revision surgery were unsuccessful. I haven't given up, even though maybe my age is in question. But, Please know that you and all of our members are in my prayers. Thank you for being so very kind!

Sincerely,

Carole