young people with PA

[Guest guest]

I am 24 yrs old and was wondering whether there is anyone of a

similar age with pa to talk to as there isn't anyone my age I know

who can relate to the way i feel due to pa. i had been an active

person until about a year ago, when pa flared up, and would like to

know what would be the best way of dealing with it and getting on

with a normal life.

[Guest guest]

Hello jimmared. Let me start off by telling you that I am 28, but

the disease started about 23, so I have been living with this disease

for over 5 years. My advice to you is simple - attack the disease

before it attacks you. Enbrel or Remicade ASAP. I played college

hockey until I was 21 years old and now, at 28, I can't even skate.

My doc's took the traditional approach and I started with motrin,

indocin, cortisone shots, vioxx, etc.. Then about 1 year ago I went

on Azulfidine and it did not help at all. Currently, I take 12.5 mg

MTX weekly, 25 mg Vioxx daily, and 750 mg Vicodin for pain as needed

(everyday!). I have been on MTX 11 weeks with zero relief. I have a

rheumy appt on Friday and I am demanding Enbrel. I won't leave there

until he says yes. I have a child on the way and plan on being able

to hold him and play with him as he gets older. If left untreated or

mildly treated with NSAIDS, you will be in poor shape by 28 years of

age. So, my advice is attack it ASAP. I use to think along with my

docs, but this disease is miserable and I believe it needs quick,

aggressive biologic therapy. Good luck - Marty

> I am 24 yrs old and was wondering whether there is anyone of a

> similar age with pa to talk to as there isn't anyone my age I know

> who can relate to the way i feel due to pa. i had been an active

> person until about a year ago, when pa flared up, and would like to

> know what would be the best way of dealing with it and getting on

> with a normal life.

[Guest guest]

Jimmared,

I completely agree with the below. I am 29 and was diagnosed a year ago.

Luckily, my doc believed that agressive treatment is the only treatment,

especially when this disease rears it's ugly head so early. There is no

reason to have long-term joint destruction, when there are treatments that

can stop that.

I was on MTX for about three months, still was having no relief, am now on

Remicade and, generally, living symptom-free. Before the Remicade, there

were mornings I couldn't get out of bed, couldn't walk up or down stairs. I

felt like a [very young] old woman. So, aggressive treatment is key to

living your life again.

Jenn

[Guest guest]

A lot of people's advice is to be aggressive. I think that is, at

least in part, a reflection that many people have not been given the

preventative care, particularly the appropriate DMAR they should have

been on. That is, they were given the NSID to treat the current

symptoms, but not the DMAR to deal with possible joint destruction

over the long haul.

I too believe in an aggressive approach, however, some caution is

needed too. All the DMARs have side effects, some short term some

long term. Not everyone's disease progresses the same way, or at the

same speed, or even ever. Also different people have different

responses to each DMAR.

If you are not on a DMAR, you should be pushing your rheumy to change

that. As to which one, they can be very different for different

people. I'm on Plaquenil. It's relatively easy for me to tolerate,

with little size effects. However, some people P's really act up

from being on this drug. Not mine and I've been on it for 10 years.

Every drug has similar issues, benefits and deficits. This is where

the art of medicine comes in. It's also where the patient has to be

knowledgeable advocate for him or herself.

> Jimmared,

>

> I completely agree with the below. I am 29 and was diagnosed a

year ago.

> Luckily, my doc believed that agressive treatment is the only

treatment,

> especially when this disease rears it's ugly head so early. There

is no

> reason to have long-term joint destruction, when there are

treatments that

> can stop that.

>

> I was on MTX for about three months, still was having no relief, am

now on

> Remicade and, generally, living symptom-free. Before the Remicade,

there

> were mornings I couldn't get out of bed, couldn't walk up or down

stairs. I

> felt like a [very young] old woman. So, aggressive treatment is

key to

> living your life again.

>

> Jenn

[Guest guest]

Hi my name is Naomi and I am 33yrs old and have P and possibly PA. I have pain

in my legs and knees for years. It has gotten so much worse and I don't know

what to think anymore. You are not alone.

Take care

Naomi

[ ] Re: young people with PA

Hello jimmared. Let me start off by telling you that I am 28, but

the disease started about 23, so I have been living with this disease

for over 5 years. My advice to you is simple - attack the disease

before it attacks you. Enbrel or Remicade ASAP. I played college

hockey until I was 21 years old and now, at 28, I can't even skate.

My doc's took the traditional approach and I started with motrin,

indocin, cortisone shots, vioxx, etc.. Then about 1 year ago I went

on Azulfidine and it did not help at all. Currently, I take 12.5 mg

MTX weekly, 25 mg Vioxx daily, and 750 mg Vicodin for pain as needed

(everyday!). I have been on MTX 11 weeks with zero relief. I have a

rheumy appt on Friday and I am demanding Enbrel. I won't leave there

until he says yes. I have a child on the way and plan on being able

to hold him and play with him as he gets older. If left untreated or

mildly treated with NSAIDS, you will be in poor shape by 28 years of

age. So, my advice is attack it ASAP. I use to think along with my

docs, but this disease is miserable and I believe it needs quick,

aggressive biologic therapy. Good luck - Marty

> I am 24 yrs old and was wondering whether there is anyone of a

> similar age with pa to talk to as there isn't anyone my age I know

> who can relate to the way i feel due to pa. i had been an active

> person until about a year ago, when pa flared up, and would like to

> know what would be the best way of dealing with it and getting on

> with a normal life.

[Guest guest]

Hi,

I am a 28 year old female and was diagnosed at age 27. I am amazed

at the progess I have made with the help of a few good drugs! The

methtrexate took a while to kick in and I had to take pretty high

doses. Now I have been on Enbrel for the past month along with the

mtx. My Psoriasis is completely gone and the arthritis is 90 %

better. At least I can function now. I can certainly deal with a few

stiff joints now and again compared to what I used to feel like.

I agree with Jenn, I think the agressive treatment is the way to go.

I had 8 months of intense pain and that was enough! I am glad my

doctor did not mess around and started me off with aggressive

treatment.

Don't feel like this is the end of life as you know it. You may

never be the same again, You may always be on some kind of meds, but

hopefully you will get on a good regimine of medications that will

allow you to lead an active, happy life.

Good Luck with your treatment!

Meredith

PS

I have found that on the days when I feel I can not get out of bed it

is best to get up and take a hot shower. The more I stay in bed the

worse I feel. After a couple of hours after being up I always feel

better!

> I am 24 yrs old and was wondering whether there is anyone of a

> similar age with pa to talk to as there isn't anyone my age I know

> who can relate to the way i feel due to pa. i had been an active

> person until about a year ago, when pa flared up, and would like to

> know what would be the best way of dealing with it and getting on

> with a normal life.

[Guest guest]

Hey,

I'm 19 and have had PA since 14. I have found that there are a

surprising number of young people with it.

After all these years I'm finding some comfort in Metho, but my

doctor is very conservative with drug prescriptions for me because of

my age. I know it sounds crazy but I am kind of glad I developed the

disease so early. I figure it gave me time to get used to it before

I had a family of my own to support. (This assuming I was going to

get it eventually anyway)

I wish you the best of luck, and remember you aren't alone in it.

Alyssa

[Guest guest]

Hi there,

Sure I think about my P and PA when starting to date someone. I have made it

a point to consider myself and make myself an amazing woman. For years I have

watched women with debilitating diseases make themselves into admirable women

who any man would love to be with... I just never thought I would be in a

position to be that woman. Make yourself into someone you love to be... and

make this disease part of that person. Be that woman that people look at and

admire for the way you are dealing with this disease, and the way you give to

others around you. If you live a proud confident life, when someone finds out

you have this disease they will be even more amazed at the amazing woman you

are.

I hope that makes a little sense. I want a man that is amazed that I do all I

do for myself and others while living with this disease. My P is pretty bad

right now, (even a small spot on my face... does anyone else have this?) but

most of it doesn't show unless my clothes are off... which I don't do until I

know someone is into me for the right reasons anyway.

I am 28 also, diagnosed at 23. I do have some deformity in my feet and a

small amount in my hands.

In a message dated 1/29/03 3:22:36 AM Eastern Standard Time,

phatsharpei@... writes:

> Well, my pa started when I was 20, now I'm 28. Only 3

> years ago I started Enbrel and the demage is done

> already, althoughy the pain seems more controlled. I

> wish I took it together with mtx. from the begining, I

> wouldn't have my hands deformed like that. It surely

> impared my social life, since I don't like peolple

> knowing about my condition and feeling sorry for me

> (...so young...).Did any of you had/have social

> problems because of that?

>

[Guest guest]

leonoraseinfeld@... writes:

<<I am 26 and just diagnosed. I was wondering if there are many others out

there who suffer from PA at a young age, and how they cope>>

Hi Leonora, I am 34 and was diagnosed at 32. Everyone copes

differently...for me, I have decided to work part time instead of full time,

which gives me

the time I need to get adequate rest and do the exercise that keeps me strong

and flexible. I went for 18 months just taking Bextra but have just added

Azulfadine as my knee joints were starting to show some deterioration. Other

than

this group, I try to also read and learn as much as I can about the disease,

and also about alternative treatments like change in diet, etc.

You have a choice with this disease...you can constantly regret that you have

it, or you can channel your energy into trying to live as well as you can.

There are times when it is hard to handle, but you can't change that you have

it, you can only change how you deal with it.

Good luck,

[Guest guest]

leonoraseinfeld@... writes:

> I am 26 and just diagnosed. I was wondering if there are many others out

> there who suffer from PA at a young age, and how they cope.

Hi There,

There are MANY of us who are/were diagnosed at a young age. The onset of PA

is most often before the age of 35 years old, so as you can see age has NOTHING

to do with it. I started having symptoms at 22 and was diagnosed by 1999 (25

years old). I cope with a positive attitude and activity. I don't allow myself

to wonder why mew any longer. I did that for the first few years and realized

it was only progressing the disease. I also take Enbrel, and where I use to

wonder what would become of my life as I age, I seldom have that fear. It's

amazing how pain can cause fear in your body. When I was in pain I was

constantly

fearful about the idea that I would never have kids and if/when I did have

them I couldn't be active with them. I worried about the possibility of

deformities and being wheel chair bound one day. Now at 29 I am almost as active

as I

was before all of this hit. I wake up every morning and feel thankful for

another pain free day, and I many times forget that I even have PA.

[Guest guest]

I got PA at age 32. Psoriasis at 19...

LeAnn Cayer & Furbrats Blossom & Meriko

Heart Bandits American Eskimo Dog Rescue

Railroad Coordinator www.heartbandits.com

[Guest guest]

Leonora,

I am 32 and was diagnosed at 22. I'm not going to lie, it gets hard- but the

medicine is getting better, so treatment options are vastly improved from even

just 10 years ago. Get a good rheumetologist and stay positive.

-Larry

[Guest guest]

Hi Leonora

I'm 27 and have had PA since 20. It gets easier when you get your

medication organised. Have you been to a Rhematoligist? If you want

to write to me you can at sarahm_76@... I'd be glad to talk

and help out as much as I can.

[Guest guest]

pookiegut@... writes:

<<I am 26 and just diagnosed. I was wondering if there are many others out

there who suffer from PA at a young age, and how they cope.>>

I started having joint pain in my mid twenties. I just turned 50 this year

and I was only properly diagnosed about a year ago. I had to get much worse

before the diagnosis was made. Hopefully some you you here do not have to get to

that point.

JANET

[Guest guest]

im 17... i didnt send in any college applications becuase i was going

to be a fireman but then this stuff happens a couple months after

college deadlines, had to quit smoking weed becuase that made it

worse, most of my friends smoke so i cant really hang around them

anymore that much, i was really into weight lifting buti had to

stop... This really screwed me over and it couldnt be at such a

horrible time to get. I started enbrel a week ago and i already

notice a diffrence in my Arthrtis but im still covered in scabs.

Hopefully it will work better in the coming months on my feet (Thats

really the only place it still is) and if it works theres a chance i

may still go into fire science but that may be a bad idea becuase

what if it becomes worse and im screwed out of my job and i dont

have the time or money to go back to school? How do i cope? Weed

brownies and im just sticking onto hope that this enbrel works and i

can do what i want to do and if i cant i have no idea what the hell

im gonna do.

[Guest guest]

I have had symptoms since I was 16. It was diagnosed as osteo arthritis and then

rheumatoid arthritis and then both and finally at age 40 (2 years ago) a

rheumatologist finally put 2 and 2 together (paid attention to the psoriasis as

well) and said I had psoriatic arthritis. The psoriasis was only in my hair and

disagnosed as being just a stress rash (FOR 24 YEARS !!!).

The Rheumatologist put me on 10mg methatrexate every Friday night. It didn't do

a thing. I am now on 40 mg once a week and that is being described as being a

" heroic dose " by 3 different reumatologists who won't let me increase it any

further. Two have said that a dermatologist would prescribe a higher dose. The

40 mg only holds the psoriasis as it is now. Reducing it at all makes the rash

spread across my face and shoulders within days.

I am also on Dolobid 40 mg a day to control the pain. It doesn't do a thing.

They are talking about putting me on morphine for the pain. And have been

talking about it for the last 16 months. Meanwhile my life is ruined.

In 2000, I was bitten by tropical bedbugs and got ITP which causes your spleen

to swell up and kill all your white blood cells/platelets. It nearly killed me.

I got down to just one platelet per litre of blood. They gave me a huge dose of

prednisone 400 mg three times a day which saved my life but then being on

prednisone for the next 3.5 years while I weaned myself off it, gave me

diabetes. Mind you - while I was on the prednisone = NO PAIN !!! No prednisone

also meant no diabetes.

I saw a new rheumatologist 3 weeks ago and he put me back on just 5mg of

prednisone a day to fight the psoriasis and relieve the pain. Now, the diabetes

is back, the pain is less and the heat of the Australian summer is making the

psoriasis worse. It is spreading onto my shoulders and through my beard. Heat

does seem to have a lot to do with it.

Do you think it is time I saw a dermatologist instead ?

Greg

[Guest guest]

hey i was dianosed a year ago- i'm only 17- where are all the teenagers in

this group? if anyone knows anywhere I can talk pls let me know! anyway hope ur

coping- i know what it feels likes like i had one the severest forms- last

summer I was bedridden for more than 3 weeks! it really shoiok my confidence,

and

i got depressed, and a lot of my friends abandoned me cuz they couldn't deal.

but i still got sum real gud friends that hav stuk with me no matta what- and

if any1 needs to talk, I'm here!

Ruth

[Guest guest]

Hey Leonora,

I was 22 when I was diagnosed with PA, but had

Psoriasis since I was 17. Of course I had pain and

signs of PA a few years before diagnosis, but last

year was my worst. TO make things worse I have

tendonitis on top which make moving at all very

painful. So once I got a Rhemy and meds which

controlled the pain, I started swimming in order to

keep the joints moving. I also have stayed away from

tomatos and began to eat a lot more fish. These things

just help the severety of an episode. Mentally, I try

to keep busy and accepted that I can't be as active as

I was. There are so many things I still want to do

with my life...but I won't let this stop me. Really

best thing to do is find the best way you can deal

with it. Their is lots of website and info on

different approaches and I know if you look into the

archives you will find other people suggestions and

storys.

Good luck with it all!!!

***Mel***

[Guest guest]

I'm 35 and just started to develop real problems with PA last year.

It's no fun. But I'm hopeful the advances in medicine will continue

to improve. I just posted something about this on my web site:

http://chuckcurrie.blogs.com/chuck_currie/2004/02/psoriatic_arthr.htm

l

[Guest guest]

ccurrie@... writes:

<<http://chuckcurrie.blogs.com/chuck_currie/2004/02/psoriatic_arthr.htm>>

I could not get anything from this website. The page could not be displayed

JANET

Eds. note: the address line was truncated, deleting the last " l " -- try this:

http://chuckcurrie.blogs.com/chuck_currie/2004/02/psoriatic_arthr.html

RAH

[Guest guest]

Greg, hasn't any rheumatologist suggested Enbrel, Remicade, or Humira? I don't

know which of these drugs is available in Australia, but it sounds like MTX

isn't doing it for either the PA or the P; and at least with Enbrel I know it

has a good track record for helping the P as well as the PA.

And no, you shouldn't be seeing a dermatologist " instead " . Maybe " in addition

to " , but not " instead " . But maybe you need a better rheumatologist!

I met this woman at the Arthritis Society here in Canada a while ago who had PA

very badly. She could hardly walk and reminded me of myself at my worst point.

However, while MY rheumatologist has done all he can for me and is wonderful in

every way, HERS wouldn't even put her on MTX, let alone one of the biologics.

This woman was in extreme pain constantly and could scarcely take a step, and

yet her rheumy was only treating her with NSAIDs.

I say this to illustrate that sometimes rheumies don't take the proper care in

treating us. MTX hasn't been enough for me (it has helped, but only so much), so

my rheumy has tried other things. If MTX isn't enough for you, your rheumy

should be doing the same. At the very least, if biologics aren't readily

available in Australia, you could be on sulfasalazine or gold.

Get a better rheumatologist, Greg... You deserve better care than you're

getting.

[Guest guest]

Dear all mixed up

What do you want from your life? What do you perceive as a 'normal'

life? If you perceive 'normal' as smoking weed, lifting weights and

being a fireman then you may be disappointed. You can't have

everything you want in life, and somethings take time. Don't be

beaten by your own frustration for a quick answer, and don't think

your life is over because you might have to give up the weed! Get

real, open your mind. There is a world out there beyond weed,

weights and careers! I think it's great that you know what you want

to do in life but if it doesn't work out you will find another

career, another hobby, new friends etc. Life does go on. You will

cope.

Please don't complain on this website about not being able to

consume foreign substances because of your PA or medication. That

isn't fair to those who have real problems related to PA. Having to

give up weed doesn't rank on my top ten list of earth shattering

things to give up one day give because of PA!

I really do wish you all the best with this nasty disease. Keep

positive, don't give up on your dream career just yet! Hang on in

there.

Darren

[Guest guest]

Hi ,

Greg's post, to which you (in my opinion, at any rate) responded so

aptly, reminded me of my own travails (and so many others', as well).

Your suggestion he find a better rheumatologist strikes me as smack

on target, too.

Many years past, I also (like Greg) wound up with Type II Diabetes,

courtesy prednisone.

And I went through (as so many of us have) the challenges, debates,

the arguments (in which, so often, the more vociferously and

insistently you postulate your critical need for adequate pain

relief, the more resistant to that notion physicians may become--

often mistaking a patient's legitimate fears and anxiousness

regarding obtaining pain meds (e.g., the " taint " of societal/familial

attitudes towards narcotics; one's fears regarding the ability to

work or perform other tasks & actions--maybe even lose, or not get, a

job, etc.).

Given the MTX and prednisone dosages Greg has been taking, he likely

will need a serious painkiller (i.e., a Schedule III, maybe even II,

narcotic), which means it's time to see a pain management specialist.

It's important to understand, if the capacity to function at a near-

normal level is neccessary or important--or both, to you, and multi-

site pain prevents that (single-site pain--perhaps even 2 or 3-site--

might conceivably be managed alternatively), then narcotic meds can

represent arguably the best possible answer--for some (but not all)

of us. (For those who haven't already learned their strengths &

weaknesses, Schedule II narcotics can be an extremely effective, and

utterly unforgiving, educator.)

Unlike other docs, the pain management docs are used to (where

appropriate) prescribing in appropriate dosages. By and large, they

are not as worried (given their specialty) as other docs about

nastygrams from state & federal regulators.

It was only after many, many years of trying to manage pain meds

with/through my internist, and perpetually being forced to limit my

activities, that I asked for a referral to a hospital-based pain

management group. It is a HUGE relief, to now have a real partner in

adequately managing the PA pain. I can work full time, and get things

done at home too; much less couch potato time...

D.

[Guest guest]

Ruth,

What do you think may have given you this flare? One

of my sisters had a severe flare at 14 with the p

after getting a sunburn. Have you had any physical

trauma that may have caused your bed ridden situation?

[Guest guest]

Hey mel

i hope you read this cuase i have something that has a pretty high

success rate with curing tendonitis. I don't know if you've ever

heard of ART (Active Realease Techniques) but it works wonderfully

as far as tendonitis and stress reltated injuries go... You should

check out www.activereleasetechniques.com and find a provider in

your area, millions swear by it (including me, save me from surgery

many times over the course of my weight lifting career )