New Member

[Guest guest]

I'm so sorry for where you are right now. You might look for alternative

ways to stay active. I replaced walking with a recumbant bike. It was not

painful to my feet and actually helped my knees, hips and lower back. Yoga

is also an exercise that relieves muscle pain and keeps joints mobil w/o

being stressful. We have all experienced the depression associated with

this disease. I wish you all the best with that one. Attitude is

everything, happiness is a choice, and there are some great medications.

Hopefully you can find the right mix of those three ingredients to give you

some relief. Good luck. Read the archives.

Ks Di

[ ] new member

Just found this site and hope that you folks can share some

information with me. Have had P for most of my life. I am 56 years

old and have just started manifesting the symptoms of severe PA in

the past year. Currently on MTX at reduced levels because last blood

test indicated liver abnormalities. Dr. also took all my pain killers

and Ibuprofen away until next test in three weeks. Having many

difficulties getting through the days with the severe pain in my

hands, hips, legs, shoulders and feet. I am a driver for a living, so

I am having difficulty daily trying to continue working at my present

job. Dr. says I should go out on Disability, but who's going to make

my house payments and car payments???? One of the most difficult

things to deal with is the reduced activity level that I am forced to

maintain because of all the pain in my life presently. Was always

very active and raced motorcycles most of my life. Rode bikes for

over 25 years but had to sell my last one in September because the

pain was too intense to allow me to enjoy it anymore!!! The

depression is another one of the difficult side effects - having a

lot of trouble reconciling myself to the fact that this has happened

to me at this early age and it seems to be progressing so rapidly in

the last year or so. Like most of you, the severe lack of energy most

of the time leaves me with no ambition to do anything but sit in my

chair and try to deal with the pain. Hope some of you have some words

of wisdom for me. Thanks

[Guest guest]

,

Welcome to the group! My son has been taking the Houston enzymes for

over a year. He was able to go off the gfcf diet after starting the

enzymes. The diet helped my son and the enzymes helped even more

(that was my quick run-down!). You can read the details at Dana's

site on this page:

http://www.autismchannel.net/dana/asrecovr.htm

> Hi Everyone:

> I am new to the group, just joined about 5 minutes ago! I have

been

> reading about Houston Enzymes, etc . . . we are not on the GF/CF

> diet. My son does take SuperNu Thera and DMG - can anyone give me

a

> quick run-down on how enzymes have worked for them?

>

> Thanks in advance.

> M.

[Guest guest]

Hi and welcome!

Here is a link to the Files section. there is a ton of information

there you can look through and see if you find anything helpful.

Please post any question you have along the way.

/files/

Since you are not GFCF already, you may want to expect some adverse

withdrawal reactions (same as on the diet) because you are

eliminating opiate peptides. This will happen with strong proteases

or anything containing the enzyme DPP IV. I will send you the file

on what to expect with enzymes. This will prepare you for possible

reactions, although some people never see any adverse reactions. My

two sons finally reached recovery when we started Houston enzymes.

We had done lots of other things too, but this is what made the

final jump over the top. One son was not severe at all (but had

substantial gut/bowel disorders) but the other was just plain non-

functional in life before.

Here are other success stories as well:

/files/Enzyme%

20Success%20Stories%20and%20Not-So-Success%20Stories/

>>My son does take SuperNu Thera and DMG

Just a heads-up on the SNT. Many kids who start enzymes begin to

have problems with the SNT or any high B supplement after awhile,

although some do not. The reason is probably because the enzymes

provide more nutrition from food and so you don't need the extra.

Grains in particular have B vitamins. when you start digesting your

food better and absorbing more you get the B from food. Giving

additional B may be took much. Also, the high B tends to be more of

a problem with people who have sulfation or phenol sensitivities.

.

[Guest guest]

Hi,

Bet you're glad you came on line. I'm new to the group now for a few weeks and

it has been a real eye opener for me. I thought l was the only one who had PA

but obviously not. It's great as you can talk about all the medications and

everyone knows what you'e talking about.

Methotrexate was not good for me but still waiting to go on new drugs. One day

at a time. l no longer work now and like you am on dissability here in the UK. I

think things are a bit easier over here as to getting free national health

insurance. I hope you keep online as other fellow sufferers can tell you more

about your PA and what happens next. More as to what the docs told me.

Take care Wilma

evafuell <evafuell@...> wrote:

Just moved into this century and went on-line this week. So good to

know there is someone out there who knows what I'm talking about.

Was diagnosed with PA 8-1-98 @ 33 years of age. Onset was very

sudden and acute. I was lucky enough to see a GP who immediately

recognized arthritis of some kind and was brassy enough to get me in

with a rheumatologist that day. I have tried Naproxyn, Arava,

Relefen, Plaquenil, Salsalate. Now I am on Vioxx, Methotrexate, and

Enbrel. The flare-ups are pretty much controlled but the fatigue is

still there. I also take folic acid and several other scrips

unrelated to the PA. I was not working at the time of diagnosis and

applied for diability on a whim and by some stroke of luck I was

approved. That was depressing in itself to have Uncle Sam tell me I

could no longer work. Enough--somebody out there send me a message.

[Guest guest]

wilmagalbraith@... wrote:

Hi,

Bet you're glad you came on line. I'm new to the group now for a few weeks and

it has been a real eye opener for me. I thought l was the only one who had PA

but obviously not. It's great as you can talk about all the medications and

everyone knows what you'e talking about.

Methotrexate was not good for me but still waiting to go on new drugs. One day

at a time. l no longer work now and like you am on dissability here in the UK. I

think things are a bit easier over here as to getting free national health

insurance. I hope you keep online as other fellow sufferers can tell you more

about your PA and what happens next. More as to what the docs told me.

Take care Wilma

evafuell <evafuell@...> wrote:

Just moved into this century and went on-line this week. So good to

know there is someone out there who knows what I'm talking about.

Was diagnosed with PA 8-1-98 @ 33 years of age. Onset was very

sudden and acute. I was lucky enough to see a GP who immediately

recognized arthritis of some kind and was brassy enough to get me in

with a rheumatologist that day. I have tried Naproxyn, Arava,

Relefen, Plaquenil, Salsalate. Now I am on Vioxx, Methotrexate, and

Enbrel. The flare-ups are pretty much controlled but the fatigue is

still there. I also take folic acid and several other scrips

unrelated to the PA. I was not working at the time of diagnosis and

applied for diability on a whim and by some stroke of luck I was

approved. That was depressing in itself to have Uncle Sam tell me I

could no longer work. Enough--somebody out there send me a message.

Wilma,

Good to hear from you. Hope you are feeling well today. I am in central

Arkansas and I think the changes in the weather here affect me quite a bit. Not

so bad once the change gets here but when the changes is coming it is bad. Does

the humidity affect you? What kind of good drugs do you have in the UK?

Anything we don't have here?

Take care!

Eva

[Guest guest]

Hi and welcome!

To get started, here is a FAQ section that gives the basic rundown on

enzymes and autism:

http://www.houstonni.com/pages/enzyme_faq.html

Here is the url for the Files section at the web site. There is a ton

of information there. Don't try to digest it all, just pick out some

for starters.

/files/

Here is one on how to read an enzyme label and what different ones do:

/files/Selecting%

20Enzyme%20Products

Here is one on What to Expect When Starting Enzymes (side-effects,

etc):

/files/Possible%20Side%

20Effects%20with%20Enzymes

Here is one on Mixing Suggestions (how to get them in your kid):

/files/Mixing%

20Suggestions%20

Please just post on any questions you have.

.

[Guest guest]

Hi Eva,

Nice to know someone else feels the bad weather coming on too. I used to say l

could feel it in my bones but that sounded silly. The humidity is just as bad as

rain sometimes as it can make you sore also, In Scotland we just need some good

weather so could feel better for a short time.

Like you l have been on many drugs like methotrexate and plaquenil. I also have

been on Sulphasalazine, penicillamine, and Gold. But none worked as took

allergic reactions to them. I noticed Enbrel that people are on and l'm going to

check with my rheumy to see if they have it over here. Will let you know how l

get on.

Wilma

Eva Fuell <evafuell@...> wrote:

wilmagalbraith@... wrote:

Hi,

Bet you're glad you came on line. I'm new to the group now for a few weeks and

it has been a real eye opener for me. I thought l was the only one who had PA

but obviously not. It's great as you can talk about all the medications and

everyone knows what you'e talking about.

Methotrexate was not good for me but still waiting to go on new drugs. One day

at a time. l no longer work now and like you am on dissability here in the UK. I

think things are a bit easier over here as to getting free national health

insurance. I hope you keep online as other fellow sufferers can tell you more

about your PA and what happens next. More as to what the docs told me.

Take care Wilma

evafuell <evafuell@...> wrote:

Just moved into this century and went on-line this week. So good to

know there is someone out there who knows what I'm talking about.

Was diagnosed with PA 8-1-98 @ 33 years of age. Onset was very

sudden and acute. I was lucky enough to see a GP who immediately

recognized arthritis of some kind and was brassy enough to get me in

with a rheumatologist that day. I have tried Naproxyn, Arava,

Relefen, Plaquenil, Salsalate. Now I am on Vioxx, Methotrexate, and

Enbrel. The flare-ups are pretty much controlled but the fatigue is

still there. I also take folic acid and several other scrips

unrelated to the PA. I was not working at the time of diagnosis and

applied for diability on a whim and by some stroke of luck I was

approved. That was depressing in itself to have Uncle Sam tell me I

could no longer work. Enough--somebody out there send me a message.

Wilma,

Good to hear from you. Hope you are feeling well today. I am in central

Arkansas and I think the changes in the weather here affect me quite a bit. Not

so bad once the change gets here but when the changes is coming it is bad. Does

the humidity affect you? What kind of good drugs do you have in the UK?

Anything we don't have here?

Take care!

Eva

[Guest guest]

Hi there

I am so very sorry to hear your life story...

http://www.thearthritiscenter.com/ with the antibiotic protocol and an

exerpt from this site of the success of treatment with dr. brown's

protocol

Scleroderma

Although our experience with scleroderma is not nearly as extensive as

our experience with rheumatoid arthritis patients, over the years we

have seen over 70 patients who have had variable responses to

antibiotics. Basically, we can group the responsive patients in three:

those patients that will improve and reverse their disease, the patients

that will stabilize and not worsen further, and the patients that will

continue to worsen. The latter group is the one comprised of patients

who come to the Arthritis Center of Riverside because they have terminal

disease. These patients have pulmonary, cardiac, gastrointestinal, and

renal involvement. Therefore, we find that the favorable responses occur

when we are able to treat the patient earlier in the disease course.

Some responses are very dramatic, with reversal of skin changes in a

matter of 6-12 months. In some patients, we have also noticed that renal

function tests have improved. Overall we have observed that we can stop

or reverse the progress of scleroderma in 2/3 of our cases.

Hope this can help you gather some information and support and make

determinations for your husband child and self.

Sincerely

rheumatic New Member

Hello, my name is . My Husband was diagnosed with Scleroderma

in 2000 about 4 months after we got married. He has been on

Colchicine, Naprroxen and Doxycycline ever since. His Scleroderma

has gotten worse lately. He doesn't notice it, but other people do.

His hands have gotten real shiney and his skin in his hands and feet

are a lot more stretched. He is always in pain. I try and massage

and stretch his fingers every morning. We thought up until yesterday

that he had limited SC, but yesterday the doctor said he has

Systemic. I am real worried about him, but I try not to show it

because I don't want to stress him out. We just had our first little

baby boy and I know my husband is saddened because he knows he will

never be able to throw a football or baseball with his son.

We live in the Tampa/St. Pete area. Does anyone know of a Doctor who

has lots of expeirence with Scleroderma Patients?

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

Dear ,

Don't be discouraged or feel hopeless. More important, try to keep your

husband's spirits up. There is help out there. My daughter, who was 29

years old at the time, began developing systems of SD in 1999. We had no

idea that's what it was, though. The official diagnosis of systemic SD came

in February of 2001. We found a doctor in north Georgia who took an

interest in her situation and began prescribing oral antibiotics for her.

Also, she gets periodic antibiotic I.V.'s.

We've had some others tap into this site recently who were also from

Florida. I don't know of a doctor there who will prescribe the antibiotics,

but since your husband is already on doxycycline, maybe that doctor would be

willing to continue it and even do the I.V. antibiotics. I can't tell you

in strong enough description how much my daughter has improved. Her skin is

no longer tight and shiny, for one thing. Also, she is no longer in any

pain. (She had shooting pains in her wrists initially.) She also has M.S.

(11 years) and we are hoping the antibiotics will eventually turn this

around.

I am also forwarding to you " Marc's Story, " which the moderator here at

rheumatic.org recently posted. I hope it will give you some hope and

encourage you to ask more questions of the people here in order to really

get on the right track.

Please feel free to contact me at anytime.

Ellen McCool

rheumatic New Member

> Hello, my name is . My Husband was diagnosed with Scleroderma

> in 2000 about 4 months after we got married. He has been on

> Colchicine, Naprroxen and Doxycycline ever since. His Scleroderma

> has gotten worse lately. He doesn't notice it, but other people do.

> His hands have gotten real shiney and his skin in his hands and feet

> are a lot more stretched. He is always in pain. I try and massage

> and stretch his fingers every morning. We thought up until yesterday

> that he had limited SC, but yesterday the doctor said he has

> Systemic. I am real worried about him, but I try not to show it

> because I don't want to stress him out. We just had our first little

> baby boy and I know my husband is saddened because he knows he will

> never be able to throw a football or baseball with his son.

>

> We live in the Tampa/St. Pete area. Does anyone know of a Doctor who

> has lots of expeirence with Scleroderma Patients?

>

>

>

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

Dear ,

Correction to my earlier email to you: My daughter's official SD diagnosis

came in August of 2000. She began IV therapy in February of 2001.

Ellen

rheumatic New Member

> Hello, my name is . My Husband was diagnosed with Scleroderma

> in 2000 about 4 months after we got married. He has been on

> Colchicine, Naprroxen and Doxycycline ever since. His Scleroderma

> has gotten worse lately. He doesn't notice it, but other people do.

> His hands have gotten real shiney and his skin in his hands and feet

> are a lot more stretched. He is always in pain. I try and massage

> and stretch his fingers every morning. We thought up until yesterday

> that he had limited SC, but yesterday the doctor said he has

> Systemic. I am real worried about him, but I try not to show it

> because I don't want to stress him out. We just had our first little

> baby boy and I know my husband is saddened because he knows he will

> never be able to throw a football or baseball with his son.

>

> We live in the Tampa/St. Pete area. Does anyone know of a Doctor who

> has lots of expeirence with Scleroderma Patients?

>

>

>

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

Deborah,

You may want to go to www.houstonni.com and read the FAQ section for

a good explanation. Then go to the Files section at this site and

read the Selecting Enzyme Products and Guidelines for Enzyme

Products. If you do not have web access, let me know and I will

forward you the information.

My son takes the Houston enzymes with all meals and snacks. The

enzymes have allowed him to leave a very restrictive diet, in fact,

he functions much better now on enzymes and off the restrictive

diet. The enzymes break down foods that my son could not properly

break down. When these foods were not being digested properly, they

leaked through the intestine and made their way to receptors in the

brain. This affected his functioning in many negative ways and

caused was is called the " opioid effect " . Just like morphine can

cause negative behaviors, these unbroken down food proteins caused

negative behaviors. When broken down as intended and absorbed, these

same foods provide nutrition and result in positive behaviors for my

son. Many children with autism are affected by foods and therefore,

may be helped by enzymes.

My son's story and many others are in the Files section in the

Success Stories. I have seen numerous behaviors improved by the

enzyme use including social skills, memory, problem-solving,

socialization, vocal pitch and rate, affection, eye contact and

overall happiness.

> Hi,

>

> Just introducing myself, I'm a mum to a four year old boy with

Autism, and have just been told by another family about enzymes.

>

> I am very interested, but struggling to make sense of it all. If

anyone can explain in a short simple way I'd be very appreciative....

i.e.. enzymes work because.... we give enzymes * times a day.... it

has reduced these behaviours etc.

>

> There's just so much to learn about all the different approaches

they have all totally lost me now. I am already a member of

different groups (so some of you might already know me) and I've just

started my son on a GF diet and I'm struggling! (to put it mildly!)

>

> Thanks and kind regards

>

> Deborah

>

>

>

[Guest guest]

> I am very interested, but struggling to make sense of it all. If

anyone can explain in a short simple way I'd be very appreciative....

i.e.. enzymes work because.... we give enzymes * times a day.... it

has reduced these behaviours etc.

My short simple explanation, using your questions/terminology from

above:

Enzymes work because they digest the food in the stomach, and many

autistic individuals do not digest food properly, which appears to be

the cause of many problems for autistic individuals.

I give enzymes before every meal and snack, before ANY food or drink

enters my kids' mouths.

It has reduced all negative behaviors, created many positive

behaviors, and together with a few dietary restrictions and also

chelation, has caused my previously autistic son to no longer qualify

as autistic.

My son's story:

http://www.autismchannel.net/dana/myson.htm

>

> There's just so much to learn about all the different approaches

they have all totally lost me now. I am already a member of different

groups (so some of you might already know me) and I've just started my

son on a GF diet and I'm struggling! (to put it mildly!)

If you are starting gf, I would recommend you only do one thing at a

time. Either do gf now, or do enzymes now, so you can determine what

works, what does not work, and what causes problems.

Dana

[Guest guest]

I think there are support groups for those that have used the Hoxsey

therapy, you can do a search on google.com to find out for sure

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

Dear ,

You said:

> My sister has very recently been diagnosed with lung cancer that has

> now spread to her brain. Sha has always been a heath food / organic

> food advocate. She is very new to the internet and she asked if I

> could help her find a good support / discussion list to help her find

> alternative therapys.

I have a friend with Stage 3c Ovarian cancer that has spread to her lungs,

liver and brain. Her Dr said that any more chemo wouldn't help her, it was

too late. Another Lady with Ovarian cancer has had surprising success with

the Protocel and Graviola combination, so it was she who recommended the

Protocel and Graviola.

My friend has been using it for about a month with astonishing results. She

also takes Bromalain (sp), Pancreatin and a product to cleanse the liver

(don't know the name) as well. A month ago, she was in the hospital, at

'death's door'... Her head felt as if it was going to explode and she had no

appetite whatsoever! She could barely walk.

Right now, she is now feeling great and eating like a horse. Her cancer

symptoms appear to be regressing daily. It is really amazing to see the

turn-around in this lady!

I also have (had?) stage 1V Ovarian cancer (in remission for 32 months) and

if the 'alternate' stuff I'm doing ever stops working, I would start the

Protocel and Graviola in a heartbeat! It's my 'back burner' therapy.

I have no connections or financial interest to the companies who sell these

products, I'm simply amazed at the improvement in this lady! There is a

Protocel discussion group that one can join through the Protocel Web site.

There are some good testimonials too.

Good Luck!

Sandy Lightfoot.

[Guest guest]

> Hello, Here is our story. My son Zeb is 3.8 and an ex-preemie(27

weeks), he has ROP(eye disease), SID, severe verbal apraxia and

possibly dyspraxic. He is a beautiful, smart, and loving child but is

starting to have terrible behaviors because of frustrations with

communication and other sources(possible allergies,metal tox)?

Yes, I do know children with your child's issues, and it was food

intolerances, metals, or other things.

>> I'm

reading and researching everything. I started him on ProEFA in January

with no results and SuperNuThera in April, other than peeing alot

really no change except may be worse behaviors.

Some kids need to work up to full dose of SNT, did you start at the

recommended dose or something lower?

Other kids do not tolerate SNT, and because you say your child may

have worse behaviors, I would recommend you consider that he might

have problems with phenols.

http://www.autismchannel.net/dana/phenol.htm

>> I haven't stopped

because I thought maybe his body needed adjustment time. He has

chronic ear infections and has been on numerous antibiotics, chronic

constipation, and allergies(seasonal).

Consider yeast issues

http://www.autismchannel.net/dana/yeast.htm

>> I'm losing my long battle with

patience and I need help. He has an appointment with DEV.Ped in a few

months, we live in a rural area and I can find no NAET doc's in KY.

where we live. I want to start enzymes because I'm sure he has gut

problems, allergies, we would not be able to stick to a GF/CF diet

because of where we live and he is picky. I want help for him , he is

so distressed lately he wrings his hands and cries while obcessing

over the phone or radio, these behaviors have worsened lately. Thanks

for any input. Alisha

I would recommend you remove the SNT, and definitely consider enzymes.

http://www.houstonni.com/

http://www.kirkmanlabs.com/

Because of the possible phenol issue, you might consider the No-Fenol

enzyme from the first source above.

Dana

[Guest guest]

hello everyone my name is karen i'm 41 and have had pa for 10 years. my

finger are the worst as they are bending and locking at the joints. i'm

on ss disability. i got turned down the first time and had to go to a

lawyer and she got me approved. it took over a year to get approved. i

take mtx and vioxx. i hope everyone has a good day. hugs, karen

A HUG IS A PERFECT GIFT ONE SIZE FITS ALL AND NOBODY MINDS IF YOU

EXCHANGE IT.

[Guest guest]

At 02:42 PM 07/04/2002, you wrote:

>Hello all,

>

>My sister has very recently been diagnosed with lung cancer that has

>now spread to her brain. Sha has always been a heath food / organic

>food advocate. She is very new to the internet and she asked if I

>could help her find a good support / discussion list to help her find

>alternative therapys. Is this a good list for this kind of

>information? Can anyone recomend any other lists / groups? Any help

>would be gratefully appreciated.

>

> Young

>California

Hi ,

Please take a look at the free newsletter archives at:

http://www.getandstaywell.com/news2.shtml

Lots of others have been helped by this information. I sincerely hope

it helps your sister.

Warmly,

Bill

Bill

Prevention and Treatment

mailto:B@...

Digital Book Author: " Cure Your Cancer "

141 pages--$14.95--Instant PDF Delivery

http://www.getandstaywell.com

[Guest guest]

Hi ...I'm 47 and have had diagnosed PA for 3 or 4 years. My PA was also

manifested mostly in my hands. I had 9 joints affected in my hands and was

developing the characteristic " C " fingers. Especially my right index finger

since I am right handed. Have you considered Enbrel or another TNF drug? After

a year on Enbrel I am in nearly complete remission. I take no pain killers and

have only the 2 joints in my right index finger which sustained permanent joint

damage before I went on Enbrel that bother me. I am playing my guitars again,

reasonably well, considering I couldn't pick one up a year ago. Evidently it

doesn't work for everyone but it was a godsend for me. You might want to check

with your RD and insurance and give one a try. I thought my life was over. Now,

I am about to go off of Enbrel to see if I am truly in remission. Ronnie E.

Re: [ ] new member

hello everyone my name is karen i'm 41 and have had pa for 10 years. my

finger are the worst as they are bending and locking at the joints. i'm

on ss disability. i got turned down the first time and had to go to a

lawyer and she got me approved. it took over a year to get approved. i

take mtx and vioxx. i hope everyone has a good day. hugs, karen

A HUG IS A PERFECT GIFT ONE SIZE FITS ALL AND NOBODY MINDS IF YOU

EXCHANGE IT.

[Guest guest]

Hello Beth,

I work in the information systems department of our visiting nurse

assn............i'm on a computer all day and do lots of

keying................so I can appreciate your problem. I would talk to my

doctor about the problem first. I have more problems with my wrists and right

elbow than I do my fingers. Keeping the fingers moving is good. I used to do

lots of needle work but no longer am able to do so. Hoping that I'll be able to

do it again when I am no longer working and will use the fingers for enjoyment

rather than work.

Nanc

[ ] new member

Hi, my name is Beth and I am 35 years old and have just recently been

diagnosed with psoriatic arthritis. I have had psoriasis since I was

9 years old. I have been trying to read everything I can about

psoriatic arthritis and it seems like my symptoms will probably get

worse before they get better. I was wondering if anyone else started

with symptoms of pain and swelling in their fingers, toes, knees and

feet? I was also wondering what you do about the pain, escpecially

in your fingers, because I make a living typing for court

stenographers and somedays I can barely type for 5 minutes until the

pain gets unbearable. I would appreciate any feed back that could be

of assistance. I also wanted to add that I am so delighted that I

discovered this board, it is really comforting to know that there are

others that are feeling the same as I am. Thanks for listening.

[Guest guest]

Beth welcome to the group. We are here to listen to

you vent, and to answer your questions to the best of

our knowledge.

My PA started in the hips.

You did not mention what meds. you were taking.

Hopefully your Ruemy has you on Celebrex or Vioxx. the

Celebrex did nothing for me. The Vioxx was great, but

messed with my stomach uncontrollably. I am now on

Methotrexate (MTX) (shots) and Remicade infusions.

Among other meds., that I am sure you will find out

about sooner than you would like :-)

Make sure you Ruemy attacts the PA aggressively. The

sooner you get on the correct meds., the sooner you

will be relieved of some of the pain.

Post back with what meds you are taking, and maybe we

can help guide you better.

Thanks,

in Atlanta, GA

--- beth0921 <bstark@...> wrote:

> Hi, my name is Beth and I am 35 years old and have

> just recently been

> diagnosed with psoriatic arthritis. I have had

> psoriasis since I was

> 9 years old. I have been trying to read everything

> I can about

> psoriatic arthritis and it seems like my symptoms

> will probably get

> worse before they get better. I was wondering if

> anyone else started

> with symptoms of pain and swelling in their fingers,

> toes, knees and

> feet? I was also wondering what you do about the

> pain, escpecially

> in your fingers, because I make a living typing for

> court

> stenographers and somedays I can barely type for 5

> minutes until the

> pain gets unbearable. I would appreciate any feed

> back that could be

> of assistance. I also wanted to add that I am so

> delighted that I

> discovered this board, it is really comforting to

> know that there are

> others that are feeling the same as I am. Thanks

> for listening.

>

>

>

__________________________________________________

[Guest guest]

Hi Beth,

I was diagnosed with PA about 3 months ago, but have had symptoms for almost 8

months now. My pain started with the big toe of my left foot. It was terribly

swollen and I could not bear to walk on it. Then about a month later the middle

finger on my right had became swollen and extremely sore. Then the big toe on my

other foot. Since then many other joints have joined in.

I finally got into a Rheumy and just started methotrexate 2 1/2 weeks ago along

with prednisone and voltaren. I have felt great! I have a feeling it is the

steroids that is helping at this point. The swelling has even gone down in my

finger and toe. I had been on numerous NSAID's and none of then helped at all.

I hope I don't have to be on the steroids for too long. Have you tried any

NSAID's or steriods yet??

Good luck, I hope you can find a course of drugs that work. It sounds like most

everyone on the board is holding out for enebrel. I am also on the waiting list

enbrel.

Hang in there!

Meredith

[ ] new member

Hi, my name is Beth and I am 35 years old and have just recently been

diagnosed with psoriatic arthritis. I have had psoriasis since I was

9 years old. I have been trying to read everything I can about

psoriatic arthritis and it seems like my symptoms will probably get

worse before they get better. I was wondering if anyone else started

with symptoms of pain and swelling in their fingers, toes, knees and

feet? I was also wondering what you do about the pain, escpecially

in your fingers, because I make a living typing for court

stenographers and somedays I can barely type for 5 minutes until the

pain gets unbearable. I would appreciate any feed back that could be

of assistance. I also wanted to add that I am so delighted that I

discovered this board, it is really comforting to know that there are

others that are feeling the same as I am. Thanks for listening.

[Guest guest]

Welcome to the group,

We all tread in a certain amount of our own darkness, but blessedly, we also

sometimes shine a light and ease each others sufferings too. Empathy and

sympathy help when applied with the loving care we share here.

If I may be permitted a bit of a rant: I can relate to your struggle with

" almost blind " rheumys... I think that some have a very hard time recognizing

anything but the " classic " version of PA or what they were taught to memorize

in med school. PA= sausage digits, only affects fingers and toes and always

has white plaque psoriasis (the most common form). In their minds, PA is so

rare that any of the supposed sub types (spondylitis and other types of P -

inverse, guttate etc. just don't make their radar). Pity they can't just

evaluate our symptoms by computer, I swear if we put in what WE know is

wrong, up pops the diagnosis. I actually had a rheumy look at the horribly

swollen tendon in my hand, look at her hand and say " oh, mine does that too

sometimes " I actually thought she might say Pooh,pooh. Then other times

like after she had time to go look it up - she would say something out of

left field like we had already had that conversation- " oh you know your form

of PA can affect any joint " - yea... I looked it up too!

I actually work at a Medical College and believe me when I tell you they

operate from the most common denominator theory. If 80% of the people with

----- have ----- , pretty soon in their minds - all people with ----- must

have -----, they forget all about that other 20%... and it sometimes takes

lots of folk to make up that 20%... it just doesn't make their radar anymore.

Pity, they end up wrong at least 20% of the time, but most doctors talk about

the art instead of the science when confronted about inaccuracies. I'd love

to find one that just said upfront, " ya know, I'm not sure, I'll have to

check that out and get back to you. " I'd probably fall over from the shock.

Hope your path is more easily traveled, Deborah

[Guest guest]

Deborah,

That first paragraph was almost poetic. In fact, I've added it to

my " favorite quotes " file, and hope you don't mind if I share it

with others from time to time - with attribution of course.

Your " rant " was very illuminating and helps clarify why some

doctors do such poor jobs of diagnosis.

I surmise that some doctors tend to put everything into certain

categories (probably to simplify their jobs), and if you have a

particular problem that doesn't fit conveniently into one of their

categories you're just out of luck. I guess the good and " great "

doctors have more room in their brains for more categories than the

poor ones - Har! From my personal experience, I'd say that

approximately one-forth of the doctors I've seen shouldn't have a

license to practice medicine. On the other hand, about one-forth

are " keepers " - the kind you go to for years and years until they

either retire or move out of the area (both of which has happened to

me with two of my favorite doctors), and the remaining half of the

doctor population is about average. The percentages are probably

similar for most professions, but unlike most other professions, bad

doctors (and other health care workers) can kill people. According to

two different studies cited at

http://www.consumerlaw.com/medical.html approximately 80,000 people

die in United States hospitals each year because of incompetent

doctors and other health care professionals. The actual number is

probably much greater than the 80,000 figure cited, because it

doesn't include deaths from missed diagnoses or medical negligence

that occurred in clinics, private doctors' offices, or other

treatment facilities.

Here's a quote from the article: " Numerically, this is more than

three fully loaded jumbo jets crashing every week with no survivors. "

Scary, isn't it?

-- Ron

> Welcome to the group,

>

> We all tread in a certain amount of our own darkness, but

> blessedly, we also sometimes shine a light and ease each others

> sufferings too. Empathy and sympathy help when applied with

> the loving care we share here.

>

> If I may be permitted a bit of a rant: I can relate to your

> struggle with " almost blind " rheumys... I think that some have

> a very hard time recognizing anything but the " classic " version

> of PA or what they were taught to memorize in med school. PA=

> sausage digits, only affects fingers and toes and always has

> white plaque psoriasis (the most common form). In their minds,

> PA is so rare that any of the supposed sub types (spondylitis

> and other types of P - inverse, guttate etc. just don't make

> their radar). Pity they can't just evaluate our symptoms by

> computer, I swear if we put in what WE know is wrong, up pops

> the diagnosis. I actually had a rheumy look at the horribly

> swollen tendon in my hand, look at her hand and say " oh, mine

> does that too sometimes " I actually thought she might say

> Pooh,pooh. Then other times like after she had time to go

> look it up - she would say something out of left field like we

> had already had that conversation- " oh you know your form of PA

> can affect any joint " - yea... I looked it up too!

>

> I actually work at a Medical College and believe me when I tell

> you they operate from the most common denominator theory. If

> 80% of the people with ----- have ----- , pretty soon in their

> minds - all people with ----- must have -----, they forget all

> about that other 20%... and it sometimes takes lots of folk to

> make up that 20%... it just doesn't make their radar anymore.

> Pity, they end up wrong at least 20% of the time, but most

> doctors talk about the art instead of the science when

> confronted about inaccuracies. I'd love to find one that just

> said upfront, " ya know, I'm not sure, I'll have to check that

> out and get back to you. " I'd probably fall over from the

> shock.

>

> Hope your path is more easily traveled, Deborah

[Guest guest]

Dear Deborah,

I am a nurse (RN) and doctors seem to be intimidated by people who question

their authority. I had one rheumy who did a bone scan and said the only

places that lit up were the places you usually see osteo arthritis so it

must be osteo, never mind that my sed rate shot up every time they decreased

the meds, she also said I didn't have anything but to keep taking Enbrel and

prednisone. She also said " don't argue with me " when I asked her a

legitimate question, needless to say she is no longer my doc. It isn't easy

when you don't fit into the mold. My brother was diagnosed 20 years ago,

had more classical symptoms, I have waited about 40 years to have the

psoriasis show up so you can have arthritis without skin disease for a long

time. It was only when my big toe nail got thick and peeled off did the

light bulb go off in the docs head. I haven't had the finger and toe stuff

either, mostly the big joints. Have had a knee replacement that did no good

until I was put on stronger meds. I do think they should educate docs

better. Cheers Anne

Re: [ ] New Member

Welcome to the group,

We all tread in a certain amount of our own darkness, but blessedly, we

also

sometimes shine a light and ease each others sufferings too. Empathy and

sympathy help when applied with the loving care we share here.

If I may be permitted a bit of a rant: I can relate to your struggle with

" almost blind " rheumys... I think that some have a very hard time

recognizing

anything but the " classic " version of PA or what they were taught to

memorize

in med school. PA= sausage digits, only affects fingers and toes and

always

has white plaque psoriasis (the most common form). In their minds, PA is

so

rare that any of the supposed sub types (spondylitis and other types of

P -

inverse, guttate etc. just don't make their radar). Pity they can't just

evaluate our symptoms by computer, I swear if we put in what WE know is

wrong, up pops the diagnosis. I actually had a rheumy look at the

horribly

swollen tendon in my hand, look at her hand and say " oh, mine does that

too

sometimes " I actually thought she might say Pooh,pooh. Then other times

like after she had time to go look it up - she would say something out of

left field like we had already had that conversation- " oh you know your

form

of PA can affect any joint " - yea... I looked it up too!

I actually work at a Medical College and believe me when I tell you they

operate from the most common denominator theory. If 80% of the people with

----- have ----- , pretty soon in their minds - all people with ----- must

have -----, they forget all about that other 20%... and it sometimes takes

lots of folk to make up that 20%... it just doesn't make their radar

anymore.

Pity, they end up wrong at least 20% of the time, but most doctors talk

about

the art instead of the science when confronted about inaccuracies. I'd

love

to find one that just said upfront, " ya know, I'm not sure, I'll have to

check that out and get back to you. " I'd probably fall over from the

shock.

Hope your path is more easily traveled, Deborah

[Guest guest]

Thanks for your kind words Ron, they mean more than you know. Of course you

have my permission to quote me at will