Re: New Kid Here/Relefen question

[Guest guest]

I am new here too, 2nd post. I can relate to your stomach problems

with the Relefen! My rhemy started me on Relefen 500mg, 2 a day. I

am supposed to take these together, with food, in the morning. It has

caused major stomach upset, and flare ups of previous stomach

problems,acid reflux,IBS,etc.. I also became very dizzy and sleepy

during the day, dosing off at my desk! I can't sleep at night due to

the reflux flareup.

I go back to my rhemy in a few weeks, and I know he is going to be

disappointed in me for stopping the Relefen. This upcoming visit I am

supposed to decide which drug to take for treating the PA.

Enbrel,Humira, Methotrexate, or sulfasalazine.

Maybe I should try taking just 1 Relefen a day, but I dread it. I

have had plenty of stomach problems in the past and don't want any

flareups. Sometimes I think doctors prescribe too much for small

bodies, 5'4 " , 114lb.

I have so many questions and wonder if my fatigue is related to the

PA? plus I have been having upper jaw pain which leads to headache in

that area the past 4 months. I thought this might be sinus related,

but I have no other symptoms of sinus problems. Could this be PA?

My knee aches during the day just like my toes, and I have elbow

pain but it feels more like bursitis. All these things are keeping me

from getting up and going to the gym like I used to. Just so fatigued

and have either one ache/pain or another daily.

How does a person know what relates to what! I feel like a walking

complaint and don't want to be that way!

>

> Hi everyone, this is my first post. I have mild-to-non existant PS,

> which made it hard for me to get a diagnosis for PA. Long story

> short, no one in my family has PS. Or so I thought. I just found

out

> last night from my second cousin in Australia, that members of her

> family do have PS, and much worse than mine.

>

> Another thing is that I was diagnosed with 'migratory' arthitis in

my

> mid-twenties. First the balls of my feet would hurt and I was

> chastized for wearing high heels. Then my hands would hurt. The

> large joints on the palm-side of my hand, not the knuckle side.

> Finally, I was the most fatigued new mom on the planet, and made to

> feel bad about not having the energy to take my kids out and play

with

> them. I'd take them to parks, but to get my but up to push a swing

or

> play hide and seek... no way. I just wanted to SIT. And I was an

> 'oddball' for being sick all the time with mild fevers. If I worked

> out, I'd be exhausted all day and then get sick with a cold after a

> week of working out.

>

> I started jogging and my knees swelled, making it impossible to

walk.

> You can guess the rest...blood tests, X-rays, then the MRI.

Finally

> a diagnosis of PA about 10 years after my symptoms first started.

> Then came the apologies from family who made me feel bad all these

years!

>

> I was on minocycline for a while and and NSAID. What's been working

> for me for years now is plaquinil and relefen. However, I've had to

> go off relefen a couple times for stomach problems. After 17 days

of

> being off of it again, my fingers started to swell again and the

mild

> fevers were coming back. So, I started taking it last night again

and

> improved immediately. If it upsets my stomach again with pain,

> intestinal spasms and diarhea, I'm going to ask my doc for something

> else. I was almost put on VIOXX and then it was taken off the market

> the next week.

>

> Has anyone else had problems with Relefen? I'm allergic to sulfa

> drugs, so there goes a bunch of options. I'd like something that

could

> help with my fatigue, but am not sure at age 40 if I want or need

> Enbrel. Suggestions would be welcome. Have a great week!

> Diane

>

[Guest guest]

Hi.

This is my first post here.

I have had psoriatic arthritis now for over 25 years. I have been on every

treatment you can think of - both medical and natural. Nothing really did the

job. I am currently on Remicade. Let me tell you, this stuff is the nuclear

bomb of psoriatic arthritis drugs. I am completely clear! No signs of

arthritis. No side effects! I highly recommend it.

The only thing is my brother. He has the same thing as me and also went on the

Remicade. The problem is that it is NOT working for him. He is currently in

the hospital in Atlanta and they are trying to figure out what to do with him.

His joints are terribly swollen and he cannot walk and is in constant pain.

Please if anyone, has any suggestions, or if you feel like praying for someone,

now is the time. He is only 44 yrs old and has a 5 year old son.

Thanks again.

Glenn Weissman

[Guest guest]

Wow...I know how you feel. You just described me right down to the height and

weight. I sometimes think I might have a bladder infection but maybe it's just

the pain from the PA. I also thought I might have asinus infection but did not

have congestion. Is it the PA? What if I ignore something and what would have

been a simple bladder infection turns into a full blown kidney infection? Do I

see my PC for every little thing? One time I had a tooth infection and did not

know it. I was taking pain meds which masked the pain I would have felt from the

tooth. Then I felt better and got off the pain meds and the tooth pain was out

of control. I almost could not drive myself to the dentist. I pulled over at one

point. I was blinded by the pain. My dentist could not believe I felt no pain

until that day. But for the entire week before that day, I was on pain meds.

This whole PA thing is tricky and sneaky. It's like it takes on a life of it's

own. Sometimes as I scoot along (hard to

call it a walk), I think to myself " This is not my body...this cannot be my

body " . I hardly recognize it. So I understand. I'm waiting for approval for

Enbrel and I'm ready to rock and roll with it. So here's a question for

you....do you find that if you gain 5 lbs it is harder on your joints? Being on

the small side myself, I find this to be true. But many PA patients have gained

a little weight due to not being able to move like we used to. I'm surprised I

have not but I've always been a puny little thing. Stress makes me lose weight

too. I've wondered if it is something in my head about the 5 lbs or is it legit?

I gain the holiday 5 every winter like clockwork. And I always feel it in my

joints. Or is it the cold weather? Just wondering if you feel the same way.

Sorry you are having a rough go of it. I just sat in a chair out in the yard

while my daughter threw a ball at me. Bending over is painful lately so I'm

trying to avoid it as much as I can but as a Mom, that's

impossible. It's impossible for most humans I think. But we laughed and had a

good time. It was pretty funny. My daughter was rolling on the ground laughing

at my trying to catch the ball in a chair. I am just Soooooooooo tired. I can

barely stand. But I still want to enjoy things. Finally I said in a mocking

tone " Hey everyone! Come play with MY Mommy...she's gimpy and it's fun!! " We try

to laugh as much as we can. And to tell the truth, it's energizing. I'm still

sitting but I feel alot better. So laugh as much as you can. -Betz

cdmarie57 <cstoll@...> wrote: I am new here too, 2nd post. I can

relate to your stomach problems

with the Relefen! My rhemy started me on Relefen 500mg, 2 a day. I

am supposed to take these together, with food, in the morning. It has

caused major stomach upset, and flare ups of previous stomach

problems,acid reflux,IBS,etc.. I also became very dizzy and sleepy

during the day, dosing off at my desk! I can't sleep at night due to

the reflux flareup.

I go back to my rhemy in a few weeks, and I know he is going to be

disappointed in me for stopping the Relefen. This upcoming visit I am

supposed to decide which drug to take for treating the PA.

Enbrel,Humira, Methotrexate, or sulfasalazine.

Maybe I should try taking just 1 Relefen a day, but I dread it. I

have had plenty of stomach problems in the past and don't want any

flareups. Sometimes I think doctors prescribe too much for small

bodies, 5'4 " , 114lb.

I have so many questions and wonder if my fatigue is related to the

PA? plus I have been having upper jaw pain which leads to headache in

that area the past 4 months. I thought this might be sinus related,

but I have no other symptoms of sinus problems. Could this be PA?

My knee aches during the day just like my toes, and I have elbow

pain but it feels more like bursitis. All these things are keeping me

from getting up and going to the gym like I used to. Just so fatigued

and have either one ache/pain or another daily.

How does a person know what relates to what! I feel like a walking

complaint and don't want to be that way!

[Guest guest]

Oh yeah...I can pray. And I'll do a little praising too that you are doing so

well. -Betz

Glenn Weissman <gweissman@...> wrote: Hi.

This is my first post here.

I have had psoriatic arthritis now for over 25 years. I have been on every

treatment you can think of - both medical and natural. Nothing really did the

job. I am currently on Remicade. Let me tell you, this stuff is the nuclear

bomb of psoriatic arthritis drugs. I am completely clear! No signs of

arthritis. No side effects! I highly recommend it.

The only thing is my brother. He has the same thing as me and also went on the

Remicade. The problem is that it is NOT working for him. He is currently in

the hospital in Atlanta and they are trying to figure out what to do with him.

His joints are terribly swollen and he cannot walk and is in constant pain.

Please if anyone, has any suggestions, or if you feel like praying for someone,

now is the time. He is only 44 yrs old and has a 5 year old son.

Thanks again.

Glenn Weissman

[Guest guest]

All I can say is hang in there! I have a bit of trouble coping with

not doing as much as I used to. For exercise I walk and I just

bought a Yoga video (as suggested from a mememer- thanks) and started

that yesterday. My workouts aren't as strenuous as they used to be,

but I am doing what I can. I am finding that any little bit of

exercise I do makes me feel good mentally and physically. It still

catches up with me and I can't beleive this has happened, but you

have to play with the cards your dealt.

I wouldn't worry about your rhuemy, if your medication is making you

sick, how is that any better than having the PA symptons? Being sick

isn't much better, As for other meds, by looking at posts, it seems

that every drug is different for every person. I personally am a big

fan of Humira because it works well for me. I am finding that now

that it is getting warmer I feel better than I have in months. I

live in Wisconsin though and I am curious to see how I feel when

things get hot and humid.

I'm really excited to start this whole yoga thing. I did the very

basics last night and felt pretty good afterward. I think that it

will be good for my swollen tendons. Like I said earlier, its not

what I used to be able to do, but it's better than nothing. It's a

matter og paying attantion to your body and knowing when you are

pushing limits.

I also want to say that there are awesome words of encouragment from

this website. I read the posts and I love how people look at the

bright side of things. When I first posted here a few weeks ago, I

felt miserable and sad, but reading messages from others have given

me a more positive attitude and has helped me cope with my bad days.

[Guest guest]

In a message dated 25/05/2006 00:00:32 GMT Daylight Time, mtymry@...

writes:

I also want to say that there are awesome words of encouragment from

this website. I read the posts and I love how people look at the

bright side of things. When I first posted here a few weeks ago, I

felt miserable and sad, but reading messages from others have given

me a more positive attitude and has helped me cope with my bad days.

Hi again ,

I meant to look to see if there was any other posts from you before I sent

that last one off. I'm delighted to see that you feel much better about things.

As we would say in Scotland, this is a magic wee group isn't it? lol

I hope the yoga exercises help you.

I'm glad I read on.

[Guest guest]

In a message dated 18/05/2006 23:48:58 GMT Daylight Time,

moosetracks888@... writes:

Hi everyone, this is my first post. I have mild-to-non existant PS,

which made it hard for me to get a diagnosis for PA. Long story

short, no one in my family has PS. Or so I thought. I just found out

last night from my second cousin in Australia, that members of her

family do have PS, and much worse than mine.

Hi Diane,

A belated welcome to you. Its good that you eventually got a diagnosis even

though it took them a very long time to get there.

As far as Enbrel is concerned. All I can say is that in my case nothing

seemed to be working until they cleared me to start Enbrel. Over the last

18months

I have improved slowly but surely.

I hope whatever you decide to do, things improve for you.

Good luck,

[Guest guest]

Hi cstoll (Is it Marie?)

I don't know if I missed your intro mail or I didn't miss it and just forgot

that I have already said hello but............................ Hello and

welcome to the group. lol I don't know whether I'm coming or going nowadays!

Have you made a decision on which biologic you want to go on to? Whatever one

you try I hope it works wonders.

Take care,

In a message dated 23/05/2006 18:09:09 GMT Daylight Time, cstoll@...

writes:

I am new here too, 2nd post. I can relate to your stomach problems

with the Relefen! My rhemy started me on Relefen 500mg, 2 a day. I

am supposed to take these together, with food, in the morning. It has

caused major stomach upset, and flare ups of previous stomach

problems,acid reflux,IBS,etc.