Thought I would introduce myself...

[Guest guest]

Hello

I'm 23 nearly 24 I was diagnosed with PA just over two years ago.

I had what I thought was RSI because I couldn't put any weight on my

wrists/hands, I had no swelling but a bit of tenderness and continual aches

and pains. I worked with my hands so I ignored it despite it getting

continually getting worse, after 3 weeks off at christmas and taking it

easy I saw a doctor to see if there was anything I could do to minimize any

damage that was doing at work so that the RSI might get better.

Got a referal to a rheumatologist who through looking at my symptoms and my

mentioning that I had a family history of psoriasis diagnosed PA. I was

given a script for Mobic and c-steriod. Four hours after taking the c-

steriods (memory fails me as to which ones they were, started with a P) my

left knee swelled up and I couldn't stand on it, right knee swelled a

little and my wrists felt like I I had cotton wool buds stuck between the

joints. I took the Mobic and resolved to not take the c-steroids until I

had spoken to some one figuring it was a side affect.

Two weeks later I got an appointment with the Rheum. who yelled at me for

being uncooperative and refused to treat me. My argument was that if I

start taking a new type of medicine and something new, painful and not

pleasant happens I'll stop taking the Meds. His argument was that it was he

perscribed it for the PA therfore it would not have done this.... I still

don't know who was right.

Second Rheum. ordered x-rays of everything and blood test and kept me on

the Mobic which did over the next 2-3 months calm everything down.

Eventually I stopped going because while I know he was monitoring how

everything was going it was a very expensive way to get a 'script for

mobic.

I've had a few small flare ups in my knees but nothing like the first one,

and my wrists get sore every couple of months months so I see my GP and

take mobic till it goes away in usually 2-4 weeks. The background level is

generally just most of the time a slight tenderness at the edge of my range

of movement in my wrists.

I got a sore throat about a month ago and as usual two weeks later I looked

like I had measels or chicken pox and now I've plaque type P on arms, legs

and torso and every thing is starting to swell so I'm back on the Mobic till

I can get another referal to see a rheum. This time it's also starting up

mildly in at least half the knuckles on my fingers, some of my toes, the

ball of the foot and my right ankle. Probably easier described as feeling

like I have the flu from the knees and elbows down and my back feels like

I've slept on the floor for a week.

I asked a lot of questions with the last Rheum. but never really got any

answers, I don't know if this is how these things usually work with Rheum.s

but I would like to know more about the desease that I can find on the

internet, whether good or bad. Gp's tell me not to take Mobic because its

'bad' for me, the Rheum. told me the inflamation is what will do the damage

so taking NSaids to remove the inflamation is required to preserve the

joints.

I've found a lot of very conflicting info as to how this desease progresses,

and I know that despite the assurances that I received from both Rheum.s

that in most cases it goes away or is generally not particularly destructive

unless it's Mutilans I know that it can also be very bad. There doesn't

seem to be many studies that have followed patients for more than a few

years and a lot of the studies have been centered around diagnostics rather

than evaluating the long term outcomes. Most studies preface any findings

regarding deterioration with the notion that long term studies tend to have

a higher retention rate of people with a more serious condition which

invalidates a lot of the data they collect regarding the average outcome.

I guess I would feel like I was being kept in the loop if the Rheum. would

at least mention that in some cases this is serious and at least speculate

as to what even with relatively mild recuring inflamation the result could

or might be when I'm 65 in 40 years time and retiring. Rather than just

assuring me that there are drug break throughs happening every year or that

it may just go away. I don't expect cristal ball readings just more info,

hell I'd be happy with text books if it came to the crunch.

I know what I have now is mild but by my family history of arthritis (pa/

osteo)in my mum and Aunts is anything to go by it is not all roses but also

not too bad they all started having problems around age 40 in hands, feet

and back. Mum has Osteo arth. causing bone growths/lumps in her hand and

has recurring odd back problems that severly limit movement which has been

put down to PA because nothing else fits. She's 47.

Any way I'm just rambling now.. I'm sure ranting is good for the psyche or

something but my apologies for this being a little long winded.

I'd thought it best to introduce myself before combing through all the

archives, it seems only fair.

I look forward to hearing about other peoples experiences though the group.

jaz

[Guest guest]

Hi Jaz:

Welcome to the group. I was wondering if anyone else has heard of this

disease going away, that would give me some hope. I have that, plus

Fibromyalgia, and Chronic Fatigue..

I am on Methotrexate cause I can't take the nsaids.I sorry to see that

you got this at such a young age, I do hope it doesn't get bad on you.

I seem to have alot of problems in the spine area also, and in my

hands, knees, etc..

I think your Rheumy should be more informative with you. I read alot on

the internet about this, and haven't really had the chance to ask many

questins of mine. But any Doctor should willingly answer your

questions. I hope the next one you go to is nicer, and more

informative..

Take care,

Jeanette

Quoting grimmelkin <grimmelkin@...>:

> Hello

>

> I'm 23 nearly 24 I was diagnosed with PA just over two years ago.

>

> I had what I thought was RSI because I couldn't put any weight on my

> wrists/hands, I had no swelling but a bit of tenderness and continual aches

> and pains. I worked with my hands so I ignored it despite it getting

> continually getting worse, after 3 weeks off at christmas and taking it

> easy I saw a doctor to see if there was anything I could do to minimize any

> damage that was doing at work so that the RSI might get better.

>

> Got a referal to a rheumatologist who through looking at my symptoms and my

> mentioning that I had a family history of psoriasis diagnosed PA. I was

> given a script for Mobic and c-steriod. Four hours after taking the c-

> steriods (memory fails me as to which ones they were, started with a P) my

> left knee swelled up and I couldn't stand on it, right knee swelled a

> little and my wrists felt like I I had cotton wool buds stuck between the

> joints. I took the Mobic and resolved to not take the c-steroids until I

> had spoken to some one figuring it was a side affect.

>

> Two weeks later I got an appointment with the Rheum. who yelled at me for

> being uncooperative and refused to treat me. My argument was that if I

> start taking a new type of medicine and something new, painful and not

> pleasant happens I'll stop taking the Meds. His argument was that it was he

> perscribed it for the PA therfore it would not have done this.... I still

> don't know who was right.

>

> Second Rheum. ordered x-rays of everything and blood test and kept me on

> the Mobic which did over the next 2-3 months calm everything down.

> Eventually I stopped going because while I know he was monitoring how

> everything was going it was a very expensive way to get a 'script for

> mobic.

>

> I've had a few small flare ups in my knees but nothing like the first one,

> and my wrists get sore every couple of months months so I see my GP and

> take mobic till it goes away in usually 2-4 weeks. The background level is

> generally just most of the time a slight tenderness at the edge of my range

> of movement in my wrists.

>

> I got a sore throat about a month ago and as usual two weeks later I looked

> like I had measels or chicken pox and now I've plaque type P on arms, legs

> and torso and every thing is starting to swell so I'm back on the Mobic till

> I can get another referal to see a rheum. This time it's also starting up

> mildly in at least half the knuckles on my fingers, some of my toes, the

> ball of the foot and my right ankle. Probably easier described as feeling

> like I have the flu from the knees and elbows down and my back feels like

> I've slept on the floor for a week.

>

> I asked a lot of questions with the last Rheum. but never really got any

> answers, I don't know if this is how these things usually work with Rheum.s

> but I would like to know more about the desease that I can find on the

> internet, whether good or bad. Gp's tell me not to take Mobic because its

> 'bad' for me, the Rheum. told me the inflamation is what will do the damage

> so taking NSaids to remove the inflamation is required to preserve the

> joints.

>

> I've found a lot of very conflicting info as to how this desease progresses,

> and I know that despite the assurances that I received from both Rheum.s

> that in most cases it goes away or is generally not particularly destructive

> unless it's Mutilans I know that it can also be very bad. There doesn't

> seem to be many studies that have followed patients for more than a few

> years and a lot of the studies have been centered around diagnostics rather

> than evaluating the long term outcomes. Most studies preface any findings

> regarding deterioration with the notion that long term studies tend to have

> a higher retention rate of people with a more serious condition which

> invalidates a lot of the data they collect regarding the average outcome.

>

> I guess I would feel like I was being kept in the loop if the Rheum. would

> at least mention that in some cases this is serious and at least speculate

> as to what even with relatively mild recuring inflamation the result could

> or might be when I'm 65 in 40 years time and retiring. Rather than just

> assuring me that there are drug break throughs happening every year or that

> it may just go away. I don't expect cristal ball readings just more info,

> hell I'd be happy with text books if it came to the crunch.

>

> I know what I have now is mild but by my family history of arthritis (pa/

> osteo)in my mum and Aunts is anything to go by it is not all roses but also

> not too bad they all started having problems around age 40 in hands, feet

> and back. Mum has Osteo arth. causing bone growths/lumps in her hand and

> has recurring odd back problems that severly limit movement which has been

> put down to PA because nothing else fits. She's 47.

>

> Any way I'm just rambling now.. I'm sure ranting is good for the psyche or

> something but my apologies for this being a little long winded.

>

> I'd thought it best to introduce myself before combing through all the

> archives, it seems only fair.

>

> I look forward to hearing about other peoples experiences though the group.

>

> jaz

[Guest guest]

Going away I think is asking too much, mine has been

in remission since I had a total knee replacement last

year. No pred, no mtx, only 150 mg voltarin,

glucosamine and fish oil daily. My hands and back are

sore but it is quite manageable

what a beautiful respite, i thank my stars everyday,

knowing it will return at some point

g

--- " yonder@... " <yonder@...>

wrote:

> Hi Jaz:

> Welcome to the group. I was wondering if anyone else

> has heard of this

> disease going away, that would give me some hope. I

> have that, plus

> Fibromyalgia, and Chronic Fatigue..

> I am on Methotrexate cause I can't take the nsaids.I

> sorry to see that

> you got this at such a young age, I do hope it

> doesn't get bad on you.

> I seem to have alot of problems in the spine area

> also, and in my

> hands, knees, etc..

> I think your Rheumy should be more informative with

> you. I read alot on

> the internet about this, and haven't really had the

> chance to ask many

> questins of mine. But any Doctor should willingly

> answer your

> questions. I hope the next one you go to is nicer,

> and more

> informative..

> Take care,

> Jeanette

>

>

>

>

>

> Quoting grimmelkin <grimmelkin@...>:

>

> > Hello

> >

> > I'm 23 nearly 24 I was diagnosed with PA just over

> two years ago.

> >

> > I had what I thought was RSI because I couldn't

> put any weight on my

> > wrists/hands, I had no swelling but a bit of

> tenderness and continual aches

> > and pains. I worked with my hands so I ignored it

> despite it getting

> > continually getting worse, after 3 weeks off at

> christmas and taking it

> > easy I saw a doctor to see if there was anything I

> could do to minimize any

> > damage that was doing at work so that the RSI

> might get better.

> >

> > Got a referal to a rheumatologist who through

> looking at my symptoms and my

> > mentioning that I had a family history of

> psoriasis diagnosed PA. I was

> > given a script for Mobic and c-steriod. Four hours

> after taking the c-

> > steriods (memory fails me as to which ones they

> were, started with a P) my

> > left knee swelled up and I couldn't stand on it,

> right knee swelled a

> > little and my wrists felt like I I had cotton wool

> buds stuck between the

> > joints. I took the Mobic and resolved to not take

> the c-steroids until I

> > had spoken to some one figuring it was a side

> affect.

> >

> > Two weeks later I got an appointment with the

> Rheum. who yelled at me for

> > being uncooperative and refused to treat me. My

> argument was that if I

> > start taking a new type of medicine and something

> new, painful and not

> > pleasant happens I'll stop taking the Meds. His

> argument was that it was he

> > perscribed it for the PA therfore it would not

> have done this.... I still

> > don't know who was right.

> >

> > Second Rheum. ordered x-rays of everything and

> blood test and kept me on

> > the Mobic which did over the next 2-3 months calm

> everything down.

> > Eventually I stopped going because while I know he

> was monitoring how

> > everything was going it was a very expensive way

> to get a 'script for

> > mobic.

> >

> > I've had a few small flare ups in my knees but

> nothing like the first one,

> > and my wrists get sore every couple of months

> months so I see my GP and

> > take mobic till it goes away in usually 2-4 weeks.

> The background level is

> > generally just most of the time a slight

> tenderness at the edge of my range

> > of movement in my wrists.

> >

> > I got a sore throat about a month ago and as usual

> two weeks later I looked

> > like I had measels or chicken pox and now I've

> plaque type P on arms, legs

> > and torso and every thing is starting to swell so

> I'm back on the Mobic till

> > I can get another referal to see a rheum. This

> time it's also starting up

> > mildly in at least half the knuckles on my

> fingers, some of my toes, the

> > ball of the foot and my right ankle. Probably

> easier described as feeling

> > like I have the flu from the knees and elbows down

> and my back feels like

> > I've slept on the floor for a week.

> >

> > I asked a lot of questions with the last Rheum.

> but never really got any

> > answers, I don't know if this is how these things

> usually work with Rheum.s

> > but I would like to know more about the desease

> that I can find on the

> > internet, whether good or bad. Gp's tell me not to

> take Mobic because its

> > 'bad' for me, the Rheum. told me the inflamation

> is what will do the damage

> > so taking NSaids to remove the inflamation is

> required to preserve the

> > joints.

> >

> > I've found a lot of very conflicting info as to

> how this desease progresses,

> > and I know that despite the assurances that I

> received from both Rheum.s

> > that in most cases it goes away or is generally

> not particularly destructive

> > unless it's Mutilans I know that it can also be

> very bad. There doesn't

> > seem to be many studies that have followed

> patients for more than a few

> > years and a lot of the studies have been centered

> around diagnostics rather

> > than evaluating the long term outcomes. Most

> studies preface any findings

> > regarding deterioration with the notion that long

> term studies tend to have

> > a higher retention rate of people with a more

> serious condition which

> > invalidates a lot of the data they collect

> regarding the average outcome.

> >

> > I guess I would feel like I was being kept in the

> loop if the Rheum. would

> > at least mention that in some cases this is

> serious and at least speculate

> > as to what even with relatively mild recuring

> inflamation the result could

> > or might be when I'm 65 in 40 years time and

> retiring. Rather than just

> > assuring me that there are drug break throughs

> happening every year or that

> > it may just go away. I don't expect cristal ball

> readings just more info,

> > hell I'd be happy with text books if it came to

> the crunch.

> >

> > I know what I have now is mild but by my family

> history of arthritis (pa/

> > osteo)in my mum and Aunts is anything to go by it

> is not all roses but also

> > not too bad they all started having problems

> around age 40 in hands, feet

> > and back. Mum has Osteo arth. causing bone

> growths/lumps in her hand and

> > has recurring odd back problems that severly limit

> movement which has been

> > put down to PA because nothing else fits. She's

> 47.

> >

> > Any way I'm just rambling now.. I'm sure ranting

> is good for the psyche or

> > something but my apologies for this being a little

> long winded.

> >

> > I'd thought it best to introduce myself before

> combing through all the

> > archives, it seems only fair.

> >

> > I look forward to hearing about other peoples

> experiences though the group.

> >

> > jaz

>

>

>

[Guest guest]

Hi everyone,

I would also like to introduce myself - I was

diagnosed with this seven years ago. It came out of

the blue and I was hospitalised for a week with pain

and swelling in every small joint in my body AT THE

AGE OF 38. The consultant said that I would be off

work for at least 18 months. I used to be very active

- cycling swimming yoga dancing I am a very physical

person. I will share with you what helps.

Reiki and a good homeopath took it away completely and

I was back to work after 6 weeks and was forced to

look after myself and remember I had a body. Despite

being a very physical pwerson I can also swing the

other way completely and be entirely in my head which

is when the flare ups usually occur. Being a teacher

it is so easy I find to get into that.

I had no return of symptoms except for the stiff neck,

which everyone I net seemed to feel like commenting on

- for about three years and then another flare up. Now

I have been taking Indomenthacin for two years but

have been able to gradually reduce the dose by

(a) listening to my body

( speaking my mind

©regular massages

(d)Not overdoing foods that do not agree with me

(e)heat, rest, preferably in a hot country as often as

possible

(f) exercising when I do not feel like it

(g)more homeopathy - very effective!!

I have tried glucosamnie fish oils etc but cannot tell

if they are effective . An ant-candida diet actually

took away the psoriasis AND the arthritis away at one

point bUT IT IS TO ME THE TOTALLY NO FUn DIET WHICH i

CANNOT STICK TO, SO NOW i TRADE A BAR OF CHOCOLAtE FOR

SWOLLEN FINGERS THE NEXT DAY, AND SO ON...

Didnt mean to go into capitals - I know what you mean

about ranting - its as if one has never said any of

this before!!

Hope some of it helps.

Helen.

[Guest guest]

That's wonderful...

Re: [ ] Thought I would introduce myself...

> Going away I think is asking too much, mine has been

> in remission since I had a total knee replacement last

> year. No pred, no mtx, only 150 mg voltarin,

> glucosamine and fish oil daily. My hands and back are

> sore but it is quite manageable

> what a beautiful respite, i thank my stars everyday,

> knowing it will return at some point

> g

>

>

[Guest guest]

Hi Jaz,

A very belated welcome to the group. I'm glad you found us but sorry that you

had to. If you are looking for answers and information, you have come to the

right place. Lots of knowledgeable and caring people here so you should be

well looked after in that department.

Take care,