hi

[Guest guest]

Helen,

Sorry you're not well.

> ... I told my

> Rheumy on Monday that I had found this group and was really impressed with

> the compassion I found here. She has a number of patients with PA and will

> pass the addy on to them too.

It's great that your dr would do that!

> I read with interest the problems that others have on MTX.

> .... I find that if I don't stay at that level, the

> nails go bad again and the lesions start appearing on my elbows and forearms

> and face again.

Hmmm ... and here I was thinking the MTX was mainly for the PA!

Actually, my P isn't so bad that I'm willing to try MTX again but

would like to get a 'handle' on the knee, back & foot problems

before they get too bad.

> ... Waiting for the

> blood tests to come back ...

Is this blood work to check what, if any, damage the MTX may

be doing to the liver, or what? I was of the impression that liver

biopsies need to be done regularly too. Is that right? That's the

kind of stuff that concerns me -- adding more problems to what

I've already got.

> Had to give up on Ultram. It just didn't work well at all. I was making

> major mistakes at work that you just can't do when you are the lead book

> keeper! I asked my rheumy if I had a stroke or something because I just

> couldn't understand why I was having so much trouble not only at work but at

> home too. I would leave to go to the drugstore or grocery store and not

> take the necessary papers with me for prescriptions or shopping lists or

> anything. Got all the way to the post office one day to mail my bills and

> they were still at home on the table! I would catch myself falling asleep

> at the wheel of the truck and that isn't good. So no more Ultram for me.

Hmmm ... again. I was doing things like that last month and wasn't on any

of those meds. I'm coming to the conclusion that a LOT of our troubles

are more centrally based than the symptoms we see/feel in our skin and joints.

The mental part was what was concerning me the most. One explanation I

heard recently, " It's fibro fog. "

Praying you'll soon be over at least the sinus infection,

Patty Bacon in the Pineywoods of East Texas

[Guest guest]

Welcome ,

I too, only have psorasis on my scalp and hairline. My

pa is much worse than the P. I also thought maybe I

was misdiagnosed, but after two rheumatologists

opinions, I know I have it now. Good Luck. Being

positive is the best thing you can do. Being active is

also a plus, and you seem to be that.

--- Boice <keboice@...> wrote:

> Just want to introduce myself, and let list members

> know a little of my

> history. Before I do, I want to say that reading

> through the case

> histories on the PA Web page was illuminating. The

> way the disease

> develops is so individual, but the process we all

> seem to go through to get

> correctly diagnosed and treated is very similar (and

> very frustrating!).

> I'm relieved to find out so many are going through

> the same thing.

>

> I'm 31, and was diagnosed with PA this year.

>

> My disease has developed as follows:

> Scalp psoriasis showed up when I was in high school

> - I still have it, but

> it is controlled with coal-tar shampoo. It really

> hasn't been a problem.

> I have no nail pitting or psoriasis on my body,

> which sometimes makes me

> wonder if the PA is the correct diagnosis. Anyone

> else have scalp

> psoriasis ONLY, along with the PA?

>

> In my 20's, I started to have severe, lower back

> problems. I was diagnosed

> with everything from bulging disk to hyper-mobile

> pelvis (?!?!), but

> nothing showed up on MRIs or X-rays at that point.

> An exercise program of

> non-impact sports (cycling, swimming) and

> strength/stretch activities has

> helped my back quite a bit, although morning

> stiffness is pretty bad.

>

> Last year, I started having problems with my feet -

> starting with " plantar

> faciitis " (heel pain). I was fit with custom

> orthotics. After the heel

> pain cleared up, my third and fourth toes on both

> feet became red and

> swollen (sausage digits), and I was diagnosed with

> Morton's Neuroma. The

> swelling cleared after a couple of months of

> anti-inflammatories. About 6

> months later, the second toe on my right foot became

> HUGE, stiff, and red.

> This time, I was diagnosed as having a bacterial

> infection, and was put on

> antibiotics, even though I argued that this could

> not possibly be the

> cause. I then went to a podiatrist, who said she

> simply didn't know what

> the problem was (nothing showed up on the x-ray),

> and I should make sure

> the shoes I was wearing fit properly! I paid out of

> my own pocket to see a

> podiatrist recommended by a friend, outside of my

> Medical Group, who

> FINALLY lead me in the right direction, suspecting

> that what I had was

> 'classic PA'. The diagnosis was confirmed by a

> rheumatologist this year.

> At this point, I am on anti-inflammatories

> (Naproxen) on and off. One of

> the toes that was swollen last year is now curled

> under, and the other toe

> is stiff. One of my fingers is also a little

> swollen and curved.

>

> I'm concerned with the progression of the disease,

> and wonder if I should

> insist on being put on a drug like Methodextrate at

> this point, while the

> PA is still mild, or if it would be better to wait.

> I'm also very

> interested in exercise and activity with this

> disease. I'm an active

> person, and am planning on participating on various

> bike rides this summer,

> some of which are 100 miles. I don't want to

> aggregate the condition or

> make it worse. Does anyone know of good

> resources/books for exercise and

> arthritis? What have those of you who are

> athletically inclined

> experienced? Exercise (the right kind) definitely

> helps me, but I've heard

> that too much can make the condition worse.

>

> Anyway, I'm happy to have found this group, and am

> looking forward to

> learning more about PA from people who actually

> experience it on a daily

> basis.

>

>

>

> Boice

> Health Education Program

> University of California,

> Phone: (530) 752-6336

> E-mail: keboice@...

> http://healthcenter.ucdavis.edu

>

>

>

__________________________________________________

[Guest guest]

In a message dated 02/09/00 3:36:03 PM Eastern Standard Time,

keboice@... writes:

<< I'm an active person, and am planning on participating on various bike

rides this summer, some of which are 100 miles. I don't want to aggregate

the condition or

make it worse. Does anyone know of good resources/books for exercise and

arthritis? What have those of you who are athletically inclined experienced?

Exercise (the right kind) definitely helps me, but I've heard that too much

can make the condition worse. >>

Hi ,

I too am a fairly active person, although I wouldn't attempt a 100 mile bike

ride LOL. I swim and bike primarily. Right now my arthritis is pretty well

under control, so I do just about what I want to do. When I'm hurting, I

tend to not want to do much, so I stick to swimming because it's so much

easier on my joints. I tend to overdo, rather than underdo, and I haven't

run into any real problems yet.

I think getting a referral to a good physical therapist is an option. I

think in a visit or two a good PTist should be able to help you ascertain

what type of exercise would be not harmful to you, yet still challenging, and

help you design a program that keeps you moving. I feel enormously better

when I keep up my exercise!

I also think the Arthritis Foundation has pamphlets or books on exercise and

arthritis, although I have not read them myself.

Best wishes,

Patty

[Guest guest]

In a message dated 02/09/00 3:36:03 PM Eastern Standard Time,

keboice@... writes:

<< I'm concerned with the progression of the disease, and wonder if I should

insist on being put on a drug like Methodextrate at this point, while the PA

is still mild, or if it would be better to wait. >>

There are many factors that you would need to evaluate when you're making

this decision. Have you talked about using MTX with your rheumatologist? I

started MTX just about right away, because it was quite apparent to both me

and my RD that my PA was not going to respond positively to NSAIDS alone.

That was my decision, knowing the side effects of the drug and the changes in

lifestyle that I was going to have to accept. There are many here who have

chosen not to use a DMARD, too, so that is an option for some.

Have you researched MTX at all? I'm not completely " up " on all the other

DMARDS, not having used them myself. There are other options, although I

understand most RDs consider MTX the " gold standard " for treatment.

If there are any specific questions you have about using MTX, I'm sure the

people here would be glad to answer them for you.

Take care,

Patty

[Guest guest]

Hi, ,

>Anyone else have scalp

> psoriasis ONLY, along with the PA?

Me too!!

What have those of you who are athletically inclined

> experienced? Exercise (the right kind) definitely helps me, but I've

heard

> that too much can make the condition worse.

I am reasonably fit for a 51 yr old, run a small hilly farm for beef cows,

garden

and play a lot of lawn bowls in the last two years. Do a daily exercise

program.

Stretching, pressups etc

I found if I wear leather or comfortable gloves I can do almost anything.

eg Built a 100sqm mtre shed, (just dont bang your finger with a hammer!!)

and the same with my feet ,I wear thick socks with gumboots or boots and

thinner

socks even with sandals, I prefer open toe sandals all year round ,so there

is no

pressure on my toes.

I find I can do really anything and I ignore' the exercise can make it worse

prognosis.' thats me tho'

hope that helps.

michael

[Guest guest]

Hi !

Thanks for your message - I was interested to read of your experiences. Have

you been on any painkillers? (I'm not familiar with Arthromax - maybe it

isn't available under that name here). I remember how horrendous I felt at

first and although I don't want to stay with " traditional " treatment I am

still very pleased that they hit me with the biggies for a start - I don't

have any joint damage and minimal pain. But boy, I do remember that pain at

nighttime!

At present I am following a Dr. Brown-like regime - 150mg clindamycin and

50mg minocycline on Monday, Wednesday and Friday. I am still taking 12.5 mg

methotrexate each week, but as I can't see how I will have any idea of how

the antibiotics are working while I am taking it, so plan to get off it asap.

Other than that I am not taking any supplements etc other than some drops

from my naturopath which are to address an iodine deficiency (and therefore a

goitre) that I have. It is her opinion that lots of supplements do more harm

than good (which I found interesting) and instead she has taken me off all

foods that she has found me to be intolerant to (which theoretically " feed "

the mycoplasma). My general health is definitely better since being on the

diet (although I really do miss wine and chocolate!).

I am feeling pretty apprehensive about what my rheumatologist will have to

say about all this, however!

Lara

[Guest guest]

Hi ,

I'm entering my Lyme Cycle, so I haven't had a chance to keep up on my

email. But wanted to thank you for thinking of me. My son, Shane, just left

after spending a few days with me. He is doing much better, although the

lump is still there, and we haven't received the culture results yet.

Doctor's office has been closed. But he seems fine. Thanks so much for

thinking of us. I will keep in touch, once I feel better and things settle

down here - been busy with re-building our septic drain fields. I'm not

actually doing the building, but the guy keeps asking me to move things, cut

branches, etc. Ant has been out of town, but is back, so now I can just

rest. Talk to you soon.

Love & Hugs to you too!

Vicki

Re: [ ] Re: Vicki

>Hi Vicki,

>Been thinking about you, and wondering how your son is doing? I hope all is

>well.

>Keep in Touch Okay ?

>Love & Hugs,

>

>

>------------------------------------------------------------------------

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>Time-limited offer. Enter today at:

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>

>Send to -Offtopiconelist messages unrelated to Lyme, please.

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>/group/lyme-aid.

>They are filed by month, pick a month and search those archives for

subjects you are interested.

>Lyme chat, go to this URL:

>/chat/lyme-aid

>Should you have trouble opening the page, go back to

/ and make sure you are registered with a password.

You can ask ONELIST to remember you, and will only have to do this one time.

>To unsubscribe, send email to -unsubscribeonelist

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>the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank

both the message and subject header.

>

[Guest guest]

Great to hear from you LaRita,and friends on the list,

I am sorry the MS did not work for ya, since it is more flexible as far as

driving goes...

I checked with my rheumatologist about Enbrel and the injection dilemma, and

he said to put it in at a 90 degree angle. The co was afraid of people

hitting a vessel, which is why they initially put it in the brochure as 45

degrees...not realizing that injection site reactions would occur when it was

sub cvtaneous... so it goes...

[Guest guest]

,

This is from Arlene......

Angel Hugs,

Diane

Hi Diane--- I tried to sign up with the link To

's hep c support but i got an undeliverable

message back--could you hook me up

thanks

So sorry to hear about the BUM DEAL!! your son got

from his employer....must be quite a let down for him

& here he's been trying so hard to 'clean up' his

life!!!

Hopefully he'll find an even better job!!

love,

arlene

rainee1313@...

--- BrownEyedAries -DIANE <diane214@...> wrote:

> looks like Joe has done away with the group:

> started one...To join go to this address.

>

>

>

> Love, Light & Faith,

> Angel Hugs,

> Diane

>

>

> Angels protect & guide us in our journey thru

> life!!

>

>

__________________________________________________

[Guest guest]

Hi Terri

I usually take my shot in the morning. They tend to keep me awake at night.

Lately with the heat I have been taking it in the evening. It's a little

hard to work in 100 degree + temperatures when you are running a fever from

the shot. As soon as the temperatures drop I'll probably go back to taking

them in the morning. I guess that everyone is nervous about the treatment in

the beginning. I know that you'll be fine though.

Try to keep up a positive attitude. you will be surprised at how much that

will help in making you feel better. I am thankful that I can get out of bed

every morning and work a full time job. This weekend we are going to

volunteer for the Red Cross helping out some of the flood victims in a

nearby town. Seems that when I help relieve someone else's problems it takes

my mind off of mine.

Don't be angry at yourself, use all of your energy at fighting the Dragon.

I hope and pray that you will start feeling better soon.

[ ] Hi

> Hi

> I have a question about treatment. Is it better to take the shot

> at night or in the morning. I will start treatment very soon and i'm

> nervous about it. Another thing that has worried is more and more

> everyday i feel like my life is draining away, the fatigue is getting

> alot worse. i get embarrassed that i get so tired doing things that 2

> years ago i could do in stride. I find out tuesday what all ws found out

> in my biopsy all i know right now is that i have cirrhosis. I am still

> fighting the dragon and will to the end. Guess i just need a little

> moral support to help fight off this depression i can feel coming on. I

> am on celexa for depression and i think most of it is just anger at

> myself. I am on alterntive treatment right now and plan to stay on it

> during peg. does anyone else feel this way (being angryat yourself)?I'm

> sorry that this is so long but i just need to talk and i need you all to

> make it thru this

> Terri

>

>

>

>

[Guest guest]

Don't apoligize, Terri, that's what we're here for. I

too had the guilt & anger knowing that I got this

disease as a result of drug abuse, even though I have

been clean and sober for over 6 years. We must learn

to forgive ourselves first of all, and concentrate on

dealing with the consequences. I think most of us have

found that taking the shot in the evening is best,

although there are exceptions, I guess it depends on

what works best for you. I suffer from fatigue, too,

and it got worse for so long and now seems to have

leveled out. I now find I have a little energy early

in the day, but evenings I have the lazyboy reserved

until I drag my carcass off to bed. I had a hard time

getting the people close to me to understand just how

tired I am, but I think it is finally sinking in.

People made, more or less, the normal demands of my

time that we all get into, I had guitar lessons, a

home fellowship group, NA/AA meetings, I have had to

cut them all out and it was a bit of an uphill battle

to get those close to me to understand that I wasn't

just being anti-social. Hang in there, this IS

do-able. -dz-

--- WTM4@... wrote:

> Hi

> I have a question about treatment. Is it

> better to take the shot

> at night or in the morning. I will start treatment

> very soon and i'm

> nervous about it. Another thing that has worried is

> more and more

> everyday i feel like my life is draining away, the

> fatigue is getting

> alot worse. i get embarrassed that i get so tired

> doing things that 2

> years ago i could do in stride. I find out tuesday

> what all ws found out

> in my biopsy all i know right now is that i have

> cirrhosis. I am still

> fighting the dragon and will to the end. Guess i

> just need a little

> moral support to help fight off this depression i

> can feel coming on. I

> am on celexa for depression and i think most of it

> is just anger at

> myself. I am on alterntive treatment right now and

> plan to stay on it

> during peg. does anyone else feel this way (being

> angryat yourself)?I'm

> sorry that this is so long but i just need to talk

> and i need you all to

> make it thru this

> Terri

>

>

__________________________________________________

[Guest guest]

Yes it is. We ae here for ya when the going gets tough but remember one thing.......WE ARE THE DRAGON SLAYERS. Together we can pull through anything. I lost my father just a month or so after finding this group and they were there for me through all the greif. It's nice to meet ya and please feel free to ask anything.

[Guest guest]

Yes we are and when one of us feels a little weak and down as I have a few times myself the others here pick us up....dust us off.....and give us a pat on the back to keep going.

[Guest guest]

As we've found out, life doesn't stop and wait for you

to get better, the s**t still happens! But we pull

together and share our troubles and griefs and we

manage to squeeze a laugh in here and there, too. It's

not easy to find people in the world at large that

understand what we're going through. -dz-

--- Jannewilms42@... wrote:

> Yes it is. We ae here for ya when the going gets

> tough but remember one

> thing.......WE ARE THE DRAGON SLAYERS. Together we

> can pull through anything.

> I lost my father just a month or so after finding

> this group and they were

> there for me through all the greif. It's nice to

> meet ya and please feel free

> to ask anything.

>

__________________________________________________

[Guest guest]

-dz-

You said it perfectly...

SH-T HAPPENS........ But we are strong and go on.....

Angel Hugs,

Diane

[Guest guest]

Terri,

All of the treatments out there can be dangerous... Just keep the

negative thoughts out of your head and try to think positive. We are all

here for you and lots of us have been where you are going. Everyone has

a different response to treatment...... I have faith that you will be

just fine.... Now turn around and bend over, so I can give you the kick

you asked for!!!!!!! LOL ;o Love ya (((Terri)))

Angel Hugs,

Diane

May Rainbow Dreams Color Your World With Love, Hope, Peace & Unity

[Guest guest]

Hang in there, Terri. It's no picnic. It is a wicked

medication designed to kill the hepatitis virus and it

does wreak havoc with the rest of your body too. I

guess this is why some people choose alternative

medications. As far as I could surmise it is the best

shot at remission also. Some people would disagree. We

are closely monitored while on the tx, and I opted to

take it. It's a very personal decision. I am still

working full time and cannot isolate myself from other

germs and viruses going around. I think you can try to

minimize the chance, but the fact is we will probably

all be exposed to some other illnesses. Often times

viruses have incubation periods, so people who do not

yet know they are sick are unwittingly exposing others

to their virus. I had fears before I decided to take

the tx. Once I prayed over it and made the decision I

did, I try not to second guess myself or live in fear.

I'll pray for you to find some comfort whatever you

decide to do. -dz-

--- WTM4@... wrote:

> I need someone tokick me right now please. I woke up

> this morning badly

> depressed. I have now had this cold for over 3 weeks

> and yesterday one

> of my neighbors came over to tel me that her son who

> is always at my

> house, has strep throat. I read an article yesterday

> that said that peg

> is a carcinogen and has severe life threatening

> sides and i'm about to

> start tx.

> I feel lost.

> Terri

>

>

__________________________________________________

[Guest guest]

Hi Terri! Hope you are feeling better.Let us know what the Dr. says ok!!!!!

[Guest guest]

I'm just getting over a bout of the flu that really

kicked my butt pretty good too. I have been running a

low grade fever quite consistantly, but nothing over

100. I hope that you find some relief. -dz-

--- WTM4@... wrote:

> Hi all

> Sorry that i haven't been on much lately. I

> have been so sick with

> this cold still. I am on Keflex 1500 mgs a day and

> respa dm but i am

> stil running a high temp. I see my dr today so

> hopefully he will have an

> idea. Hope everyone is doing ok.

> Terri

>

>

__________________________________________________

[Guest guest]

Terri,

Hang in there girl...We are all here for ya with prayers and plenty of support.

[Guest guest]

Hang in there Terri, we'll pray for you. I don't know

much about hcv diabetes, hopefully it will pass. It's

not like we don't have enough to worry about. You

sound like you've got the right attitude. Good luck on

your tests. -dz-

--- WTM4@... wrote:

> Hi

> Got some bad news today. I just found out that i

> have developed hepc

> related diabetes. Kind o feel like i'm in the middle

> of a whirlwind.

> tomorrow i have to take all the blood tests again

> with a few new added.

> I'm scared and confused, but i know that i will

> adjust fine.

> Peace

> Terri

>

>

__________________________________________________

[Guest guest]

HELLO EVERYONE !!!!!!!!!

I'M HOME!!!! ;o

First I want to Welcome the newcomers to the group! Glad to have you

here. My name is Diane and I am sure you will enjoy this circle of

friends that we have here... Sending a big warm welcome to you

all........

Terri,

I am sorry to hear about your newest health issue. Be strong, and you

know that we are here for you.... I know exactly how you feel... Every

time we turn around there is something else.... Hang in there

sweetie.....

Hi Jan, S.J., Dennis, -dz-, , , and everyone else....... I

have jet lag.... Felt a lot better in Florida.... As soon as I got off

the plane here in N.J. I started having breathing problems and pain....

I have 300 e-mails to catch up on.... Most will just be deleted.......

Missed you guys a lot.... No one had a computer so I was lost... LOL...

I also left my phone numbers home and couldn't call anyone!!! My sister

showed up early and I was being rushed.... Talk with everyone a bit

later.....

Angel Hugs,

Diane

May Rainbow Dreams Color Your World With Love, Hope, Peace & Unity

[Guest guest]

DIANE!!!!!!!! i'M SO GLAD YOU ARE BACK.....i MISSED YOU..lET ME KNOW HOW THINGS WERE..hOPE YOU FEEL BETTER SOON. GET SOME REST AND THEN GET BACK WITH US....LOVE YA GIRL!!!!!!

[Guest guest]

Dennis have a great time ok!!!!! Think of the rest of us while you are gone! Yea right...We will be the farthest people from your mind while you have a chance to get away....WE DON"T BLAME YOU EITHER!!! Have a great trip!!

[Guest guest]

Diane now I know you were not skiddish to ask a Tatooed woman if she was a true coonass!!!!!!! Hahaha... I wish I could have seen your face!!!!!