Re: I don't know if I should stay here?

[Guest guest]

please stay...we all need each other!!!

Dianne Dyslin <dyslin1952@...>

[Guest guest]

,

I do not think you should leave the group. Just because you might not always

have something to contribute does not mean other people can be there for you, we

all need people to just listen and understand. I am so sorry for your illness

and pain. Please stay with the group.

Lori in AZ

[Guest guest]

Hi ,

I certainly cannot speak for the list owner or the moderators, but....

Why would you think you need to leave? And why wouldn't you be allowed back?

I mean, it's an online list server, for goodness sakes! This isn't some secret

member organization or exclusive country club. There isn't a test in which you

need to " pass " to join.

I say, if you want to share your experiences and think that either you or others

might benefit by your membership, there is NO reason to leave.

Stay Well,

[Guest guest]

,

Sorry to hear there doesn't seem to be an exact treatment for you.  I know what

you mean about finally getting a diagnosis after years of knowing something was

wrong. If this group is beneficial to you stay. I think you have info to offer

as I believe PsA can be more of an autoimmune syndrome rather than just a

straight arthritis/skin rash disease. I pray that you will find peace in your

trouble. God bless, Patty

[Guest guest]

: You've been thru so much and I'm so sorry. My daughter has suffered from

pancreatitis and while it's currently under control, I've seen how horrible the

pain is. At one point in her life, she was in the hospital with it almost every

month and " normal " pain-killers like morphine wouldn't even touch the pain.

I am no expert but am a bit confused by your not being able to take the

biologics because of a positive ANA. The ANA is a test that indicates

inflammatory disease and biologics are one of the primary medicines used to

control the progression of many of the inflammatory diseases so - while you're

tired of researching right now - I would certainly ask about that. Perhaps

someone else in the group will correct me if I'm wrong but it just doesn't make

sense to me.

Joanna Hoelscher

[Guest guest]

I wouldn't think that not fitting any category is a reason to leave in

itself if you feel you are getting something out of being here. A number of

people had a number of diagnosis before getting the correct one and for some

if the odds are right PSA won't even be the right one. Ultimately it is up

to you but you sound like someone in need of support to me and it would be a

shame to leave a group you are familiar with because of feelings that you

don't belong. We all need to complain from time to time. I don't post much

myself because not much changes with my own PSA but in your situation I

suspect I would need to reach out.

I don't know if you do newsgroups but there is an arthritis one that covers

the whole range of things. The people there are very warm and supportive as

well so if you are looking for something in addition to this email list you

couldx check out alt.support.arthritis.

Gareeth

[Guest guest]

greetings well,some people may not be aware of it, but the psoriatic arthritis

is a genetic bad thing. it is hla-b27 gene that has malfunction and this

arthritis starts when we get to the age of 35 to 38 years old. there is no real

treatment out there except for to make people feel better. for there are

different treatments for each person try to hang in there. for i have had psa

for 28 years now, and i am ready for joint replacements for both knees, there is

nothing out there to stop or to cure this psa at alll. so hang in

there....blessed be....bob

[Guest guest]

Bob: as I understand it, only a few who have PsA have the genetic marker. You

can have PsA with or without it, just as many who have RA do not have the marker

for that disease. That's why they are each sometimes difficult to diagnose

definitively. All a doctor can do is look at symptoms and sed rate, CRP. A

positive ANA means the presence of inflammatory disease but not which one and

I'm not sure if everyone even has that.

Good luck with your knee replacements, though.. I'm sure you'll feel much

better when they're done. Not fun for the first month to six weeks but after

that, it's good.

Joanna Hoelscher

[Guest guest]

Greetings and everyone else!

It has been awhile since I have made a post but I have been reading almost daily

when I get my digest version of posts. I am glad you have decided to stay .

I don't always have anything to say, ask or add but I find the information and

support here to be immensely helpful. I have been dealing with PsA since

probably the mid 90s but was never diagnosed. I began having a rash on my hands

and feet at that time that was misdiagnosed as many things. It wasn't until 2003

that I was diagnosed with psoriasis and PsA. That was when I had my first major

flare of a joint. My ankle swelled to almost three times it's normal size and I

couldn't walk on it for almost three months. It wasn't until 2006 that I

actually got to go to a rheumy that actually wanted to do something. She

immediately did extensive blood work. I don't have the genetic marker for PsA

but my ANA and sed rates were out the roof. She started me on Remicade within

two weeks and it has been such a life saver. Due to gastric problems I can no

longer take anything for inflammation though.

The thing that raises a flag for me is that you said you aren't getting

biologics due to the elevated ANA. I would think you wouldn't be able to take

them due to the elevated liver enzymes instead. Being on a biologic I have to

have my liver enzymes and levels checked every 60 days to make sure the biologic

isn't causing any liver problems. With the diabetes, no, steroids are a no-no.

And with the liver problems anti-inflammatories would probably be a bad idea too

as they can cause liver problems. You are in a very tough situation I would

think treatment wise. But if your rheumy is any kind of decent doctor, she will

figure something out to help you or else send you to someone who can.

Most if not all of us with PsA, or RA for that matter, have periods, sometimes

all the time, of being very tired and having what we refer to as 'brain fog',

that being the inability to concentrate. Most probably because we are so tired

LOL. It does make it hard to do to research. And there is so much out there to

read about. As for those flu symptoms, have you been experiencing just plain old

muscular pain? I have been for years now, also the flu type symptoms, and was

diagnosed with fibromyalgia a couple of years ago. I'm not saying that is what

you have going on but you could bring it up with your doctor. I saw where

someone talked about writing down questions to ask your doctor. By all means do

that! And if she talks in terms you don't understand, don't hesitate to tell her

to talk in plain old English. I have to do that with my new rheumy.

You are in a good place here !

Gentle hugs,

Dalene