New Member

[Guest guest]

Hi,

I've been in the critical trial for Enbrel now since the 8th of May and both

my joints and my psoraisis are improved. I noticed when we went to the NPF

presentation that Dr. Mease said that the first clinical trial only lasted 3

months and I asked him why, then, were we going for 6 and he responded that

the FDA wanted more definitive information about the impact on psoraisis as

well as the effect on joints and the FDA figured that 3 months was not

enough of a trial period to tell. For myself, however, I can say that it

seems to affect both.

I would imagine that like everything else, it seems, it is individual

specific.

Maggie

[Guest guest]

Thanks Bob for the info. My dr. said that I didn't

need to take the Folic Acid because I'm starting on

such a low dose. I wondering though if I might take

it anyway. Couldn't hurt, right?

I also take Effexor, Ativan and my doctor just gave me

vicoprophen, which I found out last night does not

work as well as vicodin, but it helps.

Anyway, thanks again.

W.

--- B66F@... wrote:

> W, Welcome to the PA crowd.

>

> MTX can be used with some other drugs, but I would

> get the Doc's okay. I

> take MTX and celebrex and I am supposed to add

> Arava. Not sure I like all

> that mix, but I am doing better than ever. Could be

> remission, but I will

> take it no matter what. Folic Acid helps take care

> of some of the MTX side

> effects, I take 400 mcg every day. Also my Rheumy

> Doc said it was fine to

> take Tylenol if I had a really bad day, but not

> every day as it also can

> effect your liver. I take two 500 MG caplets of

> Tylenol when needed, which

> is about once or twice a week. It normally works

> for me, sort gets me over

> the hump.

>

> Bob in VA

>

>

__________________________________________________

[Guest guest]

,

I had long hair too until my scalp got really really bad. I then cut it because

it was easier to doctor the scalp. I have kept it short since. Once the scalp

cleared up, the ears got better. I haven't had any real bad scalp leisons in a

number of years. At least not that thick heavy plaque that I had at first. My

hair is still short but a nice length. I kind of brush the sides away from my

face and over the top of my ears. I think it helps to keep them less scaley. I

try to keep a perm in my hair just to give it a little something. I don't use

gel, hair spray or mousse. It drives me nuts to use it. With in one day I'm

digging. I just figure.. " what you see is what you get " TaDa! Ha!

Donna

[Guest guest]

Hi ,

I've had PA for 6 years. I'm currently on Methatrexate and folic acid.

Initially it really seem to improve my arthritic pain and decrease my skin

problems. Recently however it's been a different story.....

Firstly, I have to decrease my dosage down low in summer because hot

weather, for some reason, my methatrexate release into my blood too fast. I

get hot sweats, head aches and a rushing feeling.

Secondly I feel it is affecting my immune system as this winter I have had

the parvo virus, the flu, eye problems and constant colds.

But on the postive side it has decreased my inflammation level from 45 down

to 12 (normal), and as I'm only 36 this will at least prevent degeneration

of my joints. Most other drugs I have a problem with. I would suggest you

pursue it and see how it reacts with you....it is better than extreme

inflammation.

Kate

> Hi, my name is and I've had PA for 10 years. I hope to find

> some good information on this list.

>

[Guest guest]

I love this list! I'm getting so much information,

thanks. I still have to get to the hospital to have

the chest x-ray and blood stuff done, but then I

ready.

I so excited. The thought of not having all this

gross psorasis is improving my general mood in a big

way.

Thanks again.

[Guest guest]

Donna,

I'm the same way about hair products. Just shampoo and

conditioner. I don't have the thick scull cap plac

that I had when I first got this, but still get in

spots, mostly around the hairline.

I find that coloring my hair helps to eat away the

gunk and there is a neutragena shampoo (with salicylic

acid) that I alternate with a tar shampoo (I found the

generic works just fine).

Anyway, hope everyone has a nice weekend.

--- donna conklin <rdconklin_2000@...> wrote:

>

> ,

> I had long hair too until my scalp got really really

> bad. I then cut it because it was easier to doctor

> the scalp. I have kept it short since. Once the

> scalp cleared up, the ears got better. I haven't had

> any real bad scalp leisons in a number of years. At

> least not that thick heavy plaque that I had at

> first. My hair is still short but a nice length. I

> kind of brush the sides away from my face and over

> the top of my ears. I think it helps to keep them

> less scaley. I try to keep a perm in my hair just to

> give it a little something. I don't use gel, hair

> spray or mousse. It drives me nuts to use it. With

> in one day I'm digging. I just figure.. " what you see

> is what you get " TaDa! Ha!

>

>

> Donna

>

>

__________________________________________________

[Guest guest]

Hello, My name is Donna and I live in Michigan. We are glad that you have found

our little group. We all know how you feel about finding this group. We've all

been in your shoes. We all need this group to keep us going. I have had

Psoriasis since 1976 and PA for five years. Our bodies all react differently yet

alike. Feel free to ask question, sound off, or cry. You will find a wealth of

knowledge here.

Posting wasn't too painful was it? you will get good at it with practice.

Donna

TADEL630@... wrote:

Ok - i'm not sure i'm doing this right, but i'm trying to post on the egroup

or however this works. I'm so happy to find this site - I cried with

happiness from finding it that FINALLY!!! SOMEONE WHO CAN UNDERSTAND HOW I

FEEL!! and I cried with empathy for some of the posting because i'm at the

same place and feel your pain. Anyhow I guess this is sort of my

experimental posting - let's see if it works

[Guest guest]

Posting was a lot less painful than my knees have been lately!!

I was chatting with someone in arthritis chat last night and discovered that

she and I have many of the same problems outside of arthritis - including

diabetes, fluid retention, and kidney stones - and was wondering if these

could all somehow be related? Has anyone else had problems not related to

the PA that just happened to coinside with their flare ups? I'd be interested

in knowing - particularly if any of you suffer with diabetes and kidney

stones as well.

[Guest guest]

Robin - I believe my type II diabetes was diagnosed about the same time I had

my first PA flare - however, at that time I was misdiagnosed on the PA with

my doc. calling it " a strange virus " or maybe Fifth's disease. After that

time, I had an accident where my leg was infected for many months, and took

dose after dose of Keflex. My kidney stones formed at that time, I had

surgery for them and developed a bacterial blood infection - which caused a

TERRIBLE PA flare - finally diagnosed at that time. Anyhow, mine all seems

to be related as I've had kidney surgery again and also cause another bad

flare. I'm not really monitoring my sugar daily, but my glyco-hemoglobin has

continued to climb - been blaming it on the prednisone - but maybe it all

ties together?

[Guest guest]

I was diagnosed with type 2 diabetes about 8 weeks ago and am on meds.

for that and high cholesterol. am happy to report that i just got

results from blood test and all is normal for now, but dr. wants me to

continue on meds. by the way, my arthritis is the best it's been since

i was diagnosed 9 yrs. ago. i attribute it to the enbrel, and/or EPO

(thnx. Gillian), and the fact that i am off for the summer (low

stress). anyway, i am also interseted in the correlation between pa and

diabetes, type 2. all info would be gratefully accepted. been reading

all posts, even tho at times too busy to respond. thnx for all info.

and support best to all, robin

[Guest guest]

Welcome Davena. I've had this PA since I was 22 and I

agree with you completely when you say you feel like

92 instead of 29. Actually I'm 32, so if I use that

analogy, well it doesn't have the same effect infact,

I sound like a moron. But anyway, welcome, I hope you

get the results soon. Keep us updated, and don't

worry about the moaning, I do it all the time. Besides

we understand.

Take care,

--- Davena <davenam@...> wrote:

> Hi all

The

> blood tests were ok but the x-rays showed that my

> spine is too

> straight and that the bottom of my spine looks like

> it is begining to

> fuse.

> The thing I hate the most is that I can no longer

> bath my little girl

> or get on the floor to play with her.

>

> If you haven't fallen to sleep by now I would just

> like to say that

> I'm not always moaning, but when you try to speak to

> someone who

> hasn't got these problems they make you feel that

> you are making a

> mountain out of a mole hill!!!!

>

>

> Thanks again for listening

> Davena

>

>

>

__________________________________________________

[Guest guest]

Davena,

I know exactly what you mean about talking to others that don't have the same problems. I was speaking to my Mother the other day about how excited i was to find this group and another group that deals with psoriasis. She has had small bouts with P. but not PA. Anyhow she was not very supportive at all and said that she doesnt understand my need to talk to others and to delve into the causes and treatment etc. of the condition. That i should just do what my Doctor says and go on with life. Yeah right????

I just like to know what others are doing to help their condition and also it helps to have others share their information about treatment etc. I feel so much better since i have joined and not so alone. I think it is very healthy to be part of a support group because we can help each other through the rough spots and lift one anothers spirits. It's totally different to hear some one that knows first hand the problems you face and reassure you that better days are to come than coming from someone that is clueless. (All in good intent.)

Angie

<kelly94114@...> wrote:

Welcome Davena. I've had this PA since I was 22 and Iagree with you completely when you say you feel like92 instead of 29. Actually I'm 32, so if I use thatanalogy, well it doesn't have the same effect infact,I sound like a moron. But anyway, welcome, I hope youget the results soon. Keep us updated, and don'tworry about the moaning, I do it all the time. Besideswe understand.Take care,--- Davena <davenam@...> wrote:> Hi allThe > blood tests were ok but the x-rays showed that my> spine is too > straight and that the bottom of my spine looks like> it is begining to > fuse. > The thing I hate the most is that I can no longer> bath my little girl > or get on the floor to play with her.> > If you haven't fallen to sleep by now I would just> like to say that > I'm not always moaning, but when you try to speak to> someone who > hasn't got these problems they make you feel that> you are making a > mountain out of a mole hill!!!!> > > Thanks again for listening> Davena> > > __________________________________________________

[Guest guest]

Hi,

I know it is disconcerting to say the least, to find that someone who is in your

immediate family is not able to share your joy at finding sympathetic souls with

whom to share your trials. I know my mother considered I was being a heretic to

be involved in therapy because I was sharing the family's business with utter

strangers and she thought that was disloyal, never mind that being in therapy

for me would unlock the stranglehold she had on my psyche, but she came from a

generation for whom shame was a controller and also was just constituted in such

a way that she was unable to reach out for help and in the end it was to her

detriment. We all have different ways of doing and being and luckily, you've

found one that suites you.

You said you had also found another group to be of help. Is it on line? How is

it different from this group?

Glad you have found us.

Maggie

[Guest guest]

Hi Davena,

It's terrible what a change to your life these types of illnesses can make.

Hopefully you'll find this group supportive....I know I have.

Welcome!!

Kate

[Guest guest]

Hi Maggie,

Here is the name of the other P and PA. mail list i joined.

" Mark Shaw's P and PA Mail Group "

mail to:psoriatic@...

Angie

[Guest guest]

Davena,

You wrote:

> The thing I hate the most is that I can no longer bath my little girl

> or get on the floor to play with her.

I have to say that that is one of the worse things for me too. I have a 6

year old as well & she is an only child so I am the only one at home to play

with during the day & she wants to get on the floor & play Barbie's or

something. I drag myself to the floor with a forced smile only to have to

move to another location, sometimes barely able to move. I hate that too!!

You are not making a mountain out of a mole hill! It does help to know that

we can all share in this, to ease the pain a bit. Good luck & take care.

Debbie

[Guest guest]

Hello...

Welcome to the group and best wishes on getting Enbrel. I've had P since '76 and

PA for five years. I am due for a Rheumy trip...and have a Derm appt. on Monday.

I am in a real flare of P and PA.

You will never be alone with this group. There is wit and wisdom to be given and

received. Again welcome...Donna in Mich.

[Guest guest]

Davena -

I'm sure we can all relate to most of what you said.

I have had terrible trouble with kidney stones as well and it seems weird

that a lot of PA suffers I have talked with have stones or have had stones as

well - if you are still having that awful back pain, sometimes they don't see

the stones on xray - and you didn't mention if you had passed them - as with

so many other medical things, don't just take the M.D.'s word for it that you

don't have stones any more - if you know something is wrong, it is.

Best of luck to you,

[Guest guest]

Davena and Debbie,

I was in a car accident when my daughter was 8. I had injuries to my knee

and back, and couldn't get on the floor to play. My daughter and I would put

the Barbies and other toys on the kitchen table and play. I hope this helps

some.

Melody

[Guest guest]

Hi ,

Welcome to the group. Fatigue goes along with the PA. A lot of us have it to some degree. As for the headaches, those could be a sign of a lot of things. Maybe your med is what is giving them to you.

I have had P since '76 and PA for about five years. I haven't found anything to make my sausage toes go down. You are lucky that yours went down.

We hope that your Rheumy can pinpoint the problem and get things working for you.

Donna

davids@... wrote:

Hello,I'm very happy to have just found this group.I've read a number of the archived messages, and got some useful info.If you don't mind, I would like to post a bit about me and my PA.I have had P for about 12 years, and PA for approximately 8 years. I take a drug called celecoxib (brand name Celebrex), which has only succeeded in reducing my sausage digits. It doesn't seem to be doing much for my joints at all. I have pitted nails, though haven't lost any as yet. I have recently been extremely fatigued, with constant (literally 24 hours a day) headaches, and my GP has been stumped. I haven't seen my rheumatologist for six months. I have had a greatdeal of time off work, and am currently on a month's leave to try and fix my current problems.Two days ago, I got the results of more blood tests, including an Erythrocyte Sedimentation. My GP has got me straight to the rheumy,as the result was high. My BP is ok. Should I be worried? I feel quite relieved that perhaps I have an answer to my fatigue and headaches. Sorry if I've rambled a bit, but it's nice to be able to talk toother people who know what I'm talking about.Regards, Sheridan--------------------------------------------------------------------Failed tests, classes skipped, forgotten locker combinations. Remember the good 'ol days1/8012/4/_/494167/_/966825832/--------------------------------------------------------------------|e>-Please visit our new web page at:http://www.wpunj.edu/icip/paWe are currently discussing new chat times. moderates a chat on arthritis atwww.about.com on Thursday evenings, so check thatout in the meantime! E mail at RA@... for details.

[Guest guest]

do any of you have suggestions

on where to get it published?? >>

How about NewsWeek or Time?

The human spirit is stronger than anything that can

happen to it.

C.

[Guest guest]

Or how about the big newspapers. I don't know what's big in the east. I

would love to be able to put something in the Monterey Peninsula Herald.

Apparantly it is a big endemic area (of course the drs don't know it yet),

and my daughter is having a heck of a time getting someone to order the IVs

for her. Maybe an article would wake up some of these jerkheads that insist

on referring to themselves as DR.

Sorry, I am having a sudden panic attack and am very manicky right now.

Send it to medical schools. Send it to the...

The human spirit is stronger than anything that can

happen to it.

C.

[Guest guest]

Welcome Tony to the group. I personally can not tell you PA comes on quickly for I have had it for a long time. However only 6 years ago was when I was diagnoised PA... I think that I had it but was misdiagnosed with another kind of arthritis. Now as for the P...YES, when one flares, the other is going to be in a rip roaring flare also. I am sever with P and the only reason I am not dying off with PA pain is due to the fact I take 1,000mg of Evening Primrose Oil a day. Now I don't know if you should take that or not because of your history.

I just know if I did not take it I would be back on my cane. I am back on MTX by mouth-3 pills a week. The P is beginning to look better. I have had P since 1976. So I do know about a bad case of this mess. Puva does not work for me...the drug Soriatane had me almost clear, but my kidneys started acting up and my hair was coming out. Derm took me off that and within a month I was covered again. So I went back on the MTX. I also take folic acid on the off days.

The PA can be very painful...I don't know if it comes on over night...but it may seem like that when all the joints hurt. Hang in there buddy. This group knows what you are going through...

Donna in Mich.

Tony <gtwgn@...> wrote:

Hi,I am a 31 year old male just dx with PA. I have had psorasis since the age of 15. It started getting really bad about 3 years ago. At that time my Dematologist @ Yale New Haven Hospital put me on Methotrexate and I started PUVA treatments 2x a week. It cleared about 80% doing both treatments concurrently. Last February I found out that I had Leukemia (AML) and I had to stop both treatments since my cancer was the "pressing issue." The Chemo I was on did wonders for my skin, not one single sign of psoriasis. After 10 months of fighting I am now in remission. I can no longer take Methotrexate or PUVA because of all the damage Cancer & Chemo did to my liver, heart & kidneys. Now I have just been told that the pain I have had for the past month in my left hand, right wrist, both knees and feet are from having PA. Could this have happened over night with no warning? Could it be causing this much pain? I have never had any problems with arthritis before! I had a bone scan that showed arthritis in the places that I mentioned and showed no signs of the Leukemia turning into bone cancer. I have been tested for gout and that is negative. I take the following on a daily basis: Prednisone (30mgs), Vioxx (25mgs), Azulfidine (2Grams), Dilaudid (12mgs) & Neurontin (900mgs). The last two are for pain. My Dr said that the next step might be to start gold injections. Does this work for any of you? I am unable to do more traditional treatments because of the other complications. Also, does the PA get worse when there is a flair up of psoriasis? Right now my psoriasis is the worst it has ever been. It came back QUICKLY as soon as I finished my rounds of Chemo. Don't misunderstand me, as I am not complaining since I am most happy to be alive and kicking.Can any of you steer me in the right direction with my DR since this is all so new to me?Thank you,Tony

[Guest guest]

Tony~~I am so sorry about all that has happened and glad you are a living

witness to all of us. I am not sure but I believe your p and pa went into

remission while on other chemo..sorry I can't help you with gold injections.

but there is a site called about.com and it has some good info there also.

Good luck. Keep your chin up you are a fighter and this may not go away but

something you can live with. Has anyone mentioned enbrel or remicade...Can

you use these? Best Wishes. a

[ ] New Member

> Hi,

>

> I am a 31 year old male just dx with PA.

>

> I have had psorasis since the age of 15. It started getting really

> bad about 3 years ago. At that time my Dematologist @ Yale New Haven

> Hospital put me on Methotrexate and I started PUVA treatments 2x a

> week. It cleared about 80% doing both treatments concurrently.

>

> Last February I found out that I had Leukemia (AML) and I had to stop

> both treatments since my cancer was the " pressing issue. " The Chemo

> I was on did wonders for my skin, not one single sign of psoriasis.

>

> After 10 months of fighting I am now in remission. I can no longer

> take Methotrexate or PUVA because of all the damage Cancer & Chemo

> did to my liver, heart & kidneys.

>

> Now I have just been told that the pain I have had for the past month

> in my left hand, right wrist, both knees and feet are from having

> PA. Could this have happened over night with no warning? Could it

> be causing this much pain? I have never had any problems with

> arthritis before! I had a bone scan that showed arthritis in the

> places that I mentioned and showed no signs of the Leukemia turning

> into bone cancer. I have been tested for gout and that is negative.

>

> I take the following on a daily basis: Prednisone (30mgs), Vioxx

> (25mgs), Azulfidine (2Grams), Dilaudid (12mgs) & Neurontin (900mgs).

> The last two are for pain.

>

> My Dr said that the next step might be to start gold injections.

> Does this work for any of you? I am unable to do more traditional

> treatments because of the other complications. Also, does the PA get

> worse when there is a flair up of psoriasis? Right now my psoriasis

> is the worst it has ever been. It came back QUICKLY as soon as I

> finished my rounds of Chemo.

>

> Don't misunderstand me, as I am not complaining since I am most happy

> to be alive and kicking.

>

> Can any of you steer me in the right direction with my DR since this

> is all so new to me?

>

> Thank you,

>

> Tony

>

>

>

>

>

[Guest guest]

In a message dated 1/17/01 5:30:24 PM Pacific Standard Time, gtwgn@...

writes:

<< Could this have happened over night with no warning? Could it

be causing this much pain? >>

In my experience the answer is yes and yes. One day or minute it's here the

next gone or not as bad and it does cause a lot of pain.

<<My Dr said that the next step might be to start gold injections.

Does this work for any of you?>>

Tony I can't help ya there that is one I have not tried.

<< Also, does the PA get

worse when there is a flair up of psoriasis? Right now my psoriasis

is the worst it has ever been. >>

I can't speak for everyone but for me it seems to. If I can get the P under

control then I have more strength and energy to deal with the PA.

<< It came back QUICKLY as soon as I

finished my rounds of Chemo. >>

Mtx is a cancer drug and I know that you can get a rebound when you come off

it I wonder could this have happened to you?

I wish the best to you Tony and I am glad you came to join us. You will be

accecpted with open arms. Here we laugh and cry together and learn from

sharing our experiences

Hang in there

Nanny

-------------

Add On note: Rheumy said for me that since the liver was irritated that he

would try me on Enbrel since it did not aggravate the organs of the body. He

that Gold shots would be hard on the kidneys. PatB