RE: Anybody with Spinal PA.

[Guest guest]

In a message dated 8/9/2004 9:56:02 AM Eastern Standard Time,

fran@... writes:

Well I go to the Cleveland clinic on the 18th of August and I hope they can

give me some answers. I think I'll take a notebook of questions with me.

Take care and I hope you feel better soon.

Hope they can help you in Cleveland, Fran. I think the doctors always

dismiss the arthritis to something other then PA if they do not see horrible

changes. I also suffer from severe back pain and the doctor does not think it

is

from PA. I tend to disagree because I did not have it before either. How

is the ARava doing for you?

Janet

[Guest guest]

Dear Janet,

Thanks for the wishes at the Cleveland Clinic. I wish I were going to

Naples for a short visit instead of seeing all the doctors. l have a sister

and 2 nieces there who I hope to be able to see for dinner or lunch one day.

As far as the Arava helping, I'm almost scared to say. So far I haven't had

any real side effects, except a couple of times I've gotten sick at my

stomach for no reason. So far it's been manageable though. I think my

activity levels have definitely increased. I'm hopeful it is helping. I

feel like I've sort of gone from a 8.5 on the pain scale, where I can't do

more than get out of bed and take a shower and that's about it for the whole

day. To a pain scale of (I'm really nervous writing this down, I never have

been superstitious before but lately I'm so afraid it's all in my mind when

I feel better) 5.5. That's a huge difference for me. At 5.5 my pain

medication works almost all the time, unless I over do it. Several times

this week I've even forgotten to take my time released meds and normally I

would watch the clock on those. I've had a couple of really bad days,

Saturday night we took my daughter out to dinner and just getting ready wore

me out completely. I thought by the time I got in the car I was going to

have to go back home. I was in tears and my knee and back were killing me.

Again I had forgotten to take my main pain pills so by the time we got to

her place I was ok and actually had a great time.

I'm really thrilled it's working and deep down I think it is, I'm just so

afraid to get my hopes up when I've had so many problems with the other

drugs. I need to get my blood drawn next week and I pray it comes back fine

on my liver tests. That seems to be Arava's big area of problem and where

they have actually had people die from the drug.

So lets say I'm ecstatic, but nervous about the results. I know that Humira

was helping me too, but it also nearly killed me, so I'm just scared I guess

is the best way to say it..lol.

Anyway, thanks for asking. I know I still have a ton of things wrong with

me and they should have a great time with me at the Cleveland Clinic...lol.

I almost wish now I had waited to see if the Arava had worked before I

scheduled all the appointments, but I'm going now since it took so long to

get in. I know everyone has been wishing me luck and keeping me in their

thoughts and prayers. Those things really help me a lot and make such a

difference in your day-to-day coping skills.

Do you still think the Humira is helping you? I thought I read where you

were still feeling bad even though you've been on it long enough for it to

help you. Have you ever tried Arava? I know a lot of people are scared of

it, but if you read all the side effects and think they will all affect you,

you'd never be able to take any of the arthritis drugs on the market. It

would be so easy to " just say NO " to all of these drugs, if we weren't so

miserable. I don't regret any of the chances I've taken trying to get

better. I wish they had turned out different and I didn't have such bad

reactions, but it will all be worth it if Arava keeps working.

Sooo...I hadn't said anything because I was just seeing how long it would

last. I'm hopeful and thankful for the break in the pain regardless of

where it is coming from. Take care Janet and let me know how you are doing

with the sleep apnea machine. I still haven't gotten that worked out yet

and have to get my tech back out here to fix my machine. I feel like I

don't get enough air and end up gasping when I wake up or even before I fall

asleep. Not good.

Take care, Love, Fran

---Original Message-----

From: fam24@... [mailto:fam24@...]

Sent: Monday, August 09, 2004 4:56 PM

Subject: Re: [ ] Anybody with Spinal PA.

In a message dated 8/9/2004 9:56:02 AM Eastern Standard Time,

fran@... writes:

Well I go to the Cleveland clinic on the 18th of August and I hope they

can

give me some answers. I think I'll take a notebook of questions with

me.

Take care and I hope you feel better soon.

Hope they can help you in Cleveland, Fran. I think the doctors always

dismiss the arthritis to something other then PA if they do not see

horrible

changes. I also suffer from severe back pain and the doctor does not

think it is

from PA. I tend to disagree because I did not have it before either.

How

is the ARava doing for you?

Janet

[Guest guest]

Hi Fran,

I honestly don't know. I would imagine that had they found the problem with

my back and I didn't have Arthritis, they could well have put it down to a

degenerative disc disease. (Coincidentally, my father suffered from slipped

discs quite regularly but I think the P and therefore the PA comes from my

mothers side of the family)

I also have some " slippage " in my neck according to a MRI scan I had a while

back. I think my Rheumy has just based his decision on previous experience.

When I saw the X-rays, it looked like the problem was not just confined to

the base of my spine but kinda spreading out from there. A sort of cloudiness.

Sorry to hear about your toes Fran. I just hope your face doesn't end up

looking like a T-Rex's. Lol. (I think I must have your sense of humour too)

I still had a few years to go to retirement (I'm 47yrs old) but to tell you

the truth I don't know how I managed to keep going as long as I did. I could

still do the job but was much slower that I should be. Then my right wrist

seized up making things even more awkward. (I was a maintenance technician) Its

funny how things went so quickly. In January 2003 my employers sent me on a

two week course to Austin,Tx and by the third week of May I was off on what

was to end up long term disability. Had I known that was going to happen I

would have enjoyed myself even more than I did. Lol

I am still pretty active too. I still try to do most things myself even if

it hurts (and boy does it hurt! lol) We have a nine year old son with learning

difficulties and he is off of school on holiday at the moment so he keeps me

occupied a lot of the time. He's brilliant (I think he must be the happiest

little boy in the world. Always smiling) We also have an eighteen year old

daughter we taxi around everywhere (Been there, Done that, I hear some of you

say. Lol)

Well, good luck at the Clinic when it comes around. i was going to say I

would ask my rheumy your question but you will see yours first. Think my next

appointment is a couple of months away.

Take care,

[Guest guest]

Dear , thanks for the email. I will add my question to my list for

the Cleveland Clinic. I might as well just take a book in with me for these

poor doctors to read. I saw my family doctor today and he was really

thrilled with my increase in energy, lack of asthma, low blood pressure and

even my heart sounded good. I told him I have been feeling better from the

Arava, even though I'm scared to admit it yet. Yesterday I actually helped

my husband clean out a bedroom and we are getting new carpet since my

daughters have both moved out. It's hard being an empty nester, these days.

Anyway, I sure over did it and this morning I couldn't move enough to even

let the dogs out. So I had to go back to 20mg on prednisone and it should

be better in a day or two. To add to my problems though, tonight I opened

up the door to feed our cat, he lives outside because he is basically

insane--a whole other email let me tell you, and my little Yorkie ran out

the front door. She never has done this before and she just got over double

knee surgery about 3 months ago, so she still walks with a limp and can't go

very fast at all. I was barefoot and knew since no one else was around I

had to go after her. So she was limping at a fast rate, and I was limping

from my PA at an even slower rate...lol. I ended up chasing her all around

the house into the back yard and I'll be lucky tomorrow to even walk. So I

doubt if I notice the Arava at all tomorrow.

It must be hard to stay at home when you are so used to working. It's great

that you get to spend time with your son and daughter though and I guess

there are hidden benefits to PA, that we don't even consider. I didn't look

at my X-ray of my spine to know if it was cloudy like you mentioned. I

think it's PA related, but just hope it doesn't get bad enough that they can

find it out definitely.

Thanks again for all your help and support. I think you made this group

really great by the way.

Sincerely, Fran

[Guest guest]

Hi Fran,

Great to hear that you may be getting some relief at last. I suppose you are

right to be cautiously optimistic given your previous history with these

drugs but fingers crossed eh?

Keep improving. Thats an order! Lol

[Guest guest]

Hi again Fran,

That's what happens is'nt it? You have one good day, go mad and suffer for

the next five days.

That must have been something to see, you chasing the dog around the garden

and the both of you limping. I know they say that dogs tend to look like their

owners but is'nt your dog taking things a bit too far? Lol

Hope you manage to get away with all the running around.

Take care,

[Guest guest]

Dear , It was something to see let me tell you because I was in my

pajamas, since I always get comfortable as soon as I get home. Barefoot, so

I stepped on all the roots and pinecones that had fallen from the trees, and

my feet were hurting before...lol. Add to the whole picture, me yelling,

" Come back Romeo " and you can see the neighbors had a real show...Romeo is

my toy poodle who decided to join the chase when he saw the front door open.

At least he minded me, but the little Yorkie, who so has a mind of her own

could have cared less. She could barely walk by the time we got to the back

yard and we did look a lot a like. She has had arthritis for about 2 years

which has been rough on me because I know how bad she feels.

I actually can move today, very slowly, but I can move. If she gets out

again, I'm going to have to call someone else to catch her because that one

trip was it for me. Glad I could provide some humor for your day....Love,

Fran

Re: [ ] Anybody with Spinal PA.

Hi again Fran,

That's what happens is'nt it? You have one good day, go mad and suffer for

the next five days.

That must have been something to see, you chasing the dog around the

garden

and the both of you limping. I know they say that dogs tend to look like

their

owners but is'nt your dog taking things a bit too far? Lol

Hope you manage to get away with all the running around.

Take care,

[Guest guest]

Hi Fran,

Yeah and you've done it again. Now I am saying to myself that it was just as

well your poodle didn't hide from you or you might have been shouting

" Wherefor art thou Romeo?

Good to hear you were able to move the next day.

Cheers,

[Guest guest]

Dear Fran,

I will never again be able to think of " Romeo and

t " , without thinking of you as t, barefoot

and limping in your pajamas! Thanks, you've made my

day!

Warm blessings,

Jane

[Guest guest]

Dear Jane, I'm glad I could make you smile. We can't lose our sense of

humor or it would be really hard to deal with all of this. Love, Fran

---- -Original Message-----

From: jane karsten [mailto:janekarsten@...]

Sent: Thursday, August 12, 2004 7:36 AM

Subject: RE: [ ] Anybody with Spinal PA.

Dear Fran,

I will never again be able to think of " Romeo and

t " , without thinking of you as t, barefoot

and limping in your pajamas! Thanks, you've made my

day!

Warm blessings,

Jane