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yes---look at http://www.armourthyroid.com

Gracia

> Thank you so much for the information and feedback!

>

> Now. I'm still learning, but I think that when you say T4, that's what's

in

> the synthetic RX's (like Levoxyl, which is what I'm on). Levoxyl doesn't

> have T3, I'd have to be on a natural thyroid, like Armour to get that,

> right?

>

> My doctor did talk about another alternative to try, something that is

made

> out of pig thyroids, that we could try as well if this one didn't work.

I'm

> assuming that's what the natural is.

>

> I'm I getting it, at least a little? :-)

>

>

>

> _____

>

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angela_bradford wrote:

>... I'm I getting it, at least a little? :-)

>

,

The one part you might be missing, is that T4 is normally converted to

T3 by healthy tissue. Thus, for many of us, supplementing T4 with

Levoxyl or Synthroid is sufficient to feel well, and the indicator test

(TSH), which responds to T3 and signals the thyroid to produce more T4,

is sufficiently reliable to adjust the dosage.

For others, there seems to be a problem with conversion, storage, or

response to T3. T4 levels may be normal, while T3 is low. Others

develop symptoms of hyperthyroid, when the usual adjustments are based

on TSH. For these folks, supplementing with T3 itself (Cytomel), or a

mixture of T3 and T4 (Armour, desiccated thyroid glands), may be

preferable.

Therein lies the basis for many continuing discussions, especially since

the medical community does not seem to agree on which approach(s) is

best. The list also has fun interpreting the array of diagnostic tests

available. Again, there is controversy as to what tests are best or even

useful. And, there are other, less common, ways the system can get out

of tune. Just read our archives.

Chuck Blatchley

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What is probably in the family tree is thyroid problems! Look into

that first!! If I had not seen it myself how it evolves from thyroid

I would have listen to the first doctor, not healed my daughter she

would be on prozac and the birth contol pill to have a period--never

finding out it was thyroid. Imagine how many years this would have

gone on!!! Matter of fact we realize my sister has the same problem

and it also started in college---now at 41 she realizes it's thyroid.

My younger sister at 31 also became hyper with the birth of her only

child and has been on strong anti-depressents for 6 years--in the

hospital twice (from attempting sucide) from these drugs.

The biggest problem I see when you take these kinds of drugs is that

they are not meant or formulated for hormone problems, so the body

does not use them as they are intended too---so the lithium really

sent her over the edge!!! Along with everything else she took.

I don't think having a hormonal imbalance works well with these drugs.

Lucky for me my younger sister is off most of these drugs now. And

her hyper problems were only from the birth. They are now normal, but

she was on strong drugs for these past 6 years. I really have no idea

what they have done to her.

> I am so glad you finally found help, and the right diagnosis!

>

> I too experienced much of what you went through. Except they

> diagnosed me as depressive pms disorder. A combo of Zoloft and

Zanax

> got rid of some of the anxiety and insomnia, but didn't cure me.

The

> weepy tearful moods kept striking, so did bi-monthly 5 day long

black

> depressive spells. Of course, I kept this all to myself or I am

> sure they would have been pulling out the strong anti-depressants.

>

> T4 wouldn't cure the behavioral, T3 did. If your current dose

> doesn't alleviate the tearful bouts I encourage you to explore with

> your doctor the possiblity of adding a little T3. It did the trick

> for me when the labs never indicated that this was the problem. I

no

> longer take Zoloft, Zanax or any other antidepressant.

>

> However, I must add that these posts are starting to scare me. I

see

> such a strong correlation between this disorder and schizophrenia

> and/or manic depression. I do not suffer from these, but it is

> strongly in the family tree.

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Chuck,

Thank you for the clarification, that really helped. I was told that it

often takes months, or even years (hoping not) to find the right dosage and

or medication/s, so that makes sense. Hopefully I don't have problems

converting T4...

I'm definitely learning a lot on this list, and having to lookup a lot of

terms and medications. I'll definitely be taking a look at the archives as

well.

________________________________________

From: Chuck Blatchley [mailto:cblatchl@...]

Sent: Monday, December 01, 2003 12:22 PM

hypothyroidism

Subject: Re: RE: Newly Diagnosed

angela_bradford wrote:

>... I'm I getting it, at least a little?  :-)

>

,

The one part you might be missing, is that T4 is normally converted to

T3 by healthy tissue. Thus, for many of us, supplementing T4 with

Levoxyl or Synthroid is sufficient to feel well, and the indicator test

(TSH), which responds to T3 and signals the thyroid to produce more T4,

is sufficiently reliable to adjust the dosage.

For others, there seems to be a problem with conversion, storage, or

response to T3. T4 levels may be normal, while T3 is low.  Others

develop symptoms of hyperthyroid, when the usual adjustments are based

on TSH. For these folks, supplementing with T3 itself (Cytomel), or a

mixture of T3 and T4 (Armour, desiccated thyroid glands), may be

preferable.

Therein lies the basis for many continuing discussions, especially since

the medical community does not seem to agree on which approach(s) is

best. The list also has fun interpreting the array of diagnostic tests

available. Again, there is controversy as to what tests are best or even

useful. And, there are other, less common, ways the system can get out

of tune. Just read our archives.

Chuck Blatchley

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Hi ,

Hopefully this will clear up a few things for you.

1. Armour is from pig thryoid. It has both T3 and T4 in it.

2. Levoxyl is T4 as is synthroid. T3 is made from T4. There are

lab tests to see if you have conversion problems. However, if you

have Hashimoto's thyroiditis any and all labs are not completely

accurate. So you have to factor in symptoms.

3. Coldness and behavioral issues are best addressed by T3 (Cytomel

is one RX name for it). If you are experiencing these symptoms and

your T4 med is optimized, you may need to add T3 or switch to Armour.

Be persistent with your doc if everything is not ok. My doc

dismissed sad bouts as environmental/behavioral. It wasn't until I

visited him during one that he finally listened. I have been " happy "

for nearly a year now.

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Hi , Please can you expand upon this tie-in. Are they

theorizing that the deficiency is chronic in these cases so the

hormonal imbalance causes it? Or is it the same gene abnormality

causing both?

Thanks!

> That's because there is one!!! Gracia

>

> > However, I must add that these posts are starting to scare me. I

see such a strong correlation between this disorder and schizophrenia

> > and/or manic depression. I do not suffer from these, but it is

> > strongly in the family tree.

> >Cher

> >

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Armour contains T4, T3, T2, T1, T0, calcitonen and perhaps other as yet

unidentified hormones. T4 is a storage hormone and T3 is the workhorse

hormone, having a profound effect on the brain. I think " conversion

problem " is a bit of a misnomer--most people feel best with T3. Some

researchers think T2 may be just as important. Conventional thyroid

treatment is dictated by pharmaceutical companies, not necessarily what is

best for patients.

Gracia

> Hi ,

>

> Hopefully this will clear up a few things for you.

>

> 1. Armour is from pig thryoid. It has both T3 and T4 in it.

> 2. Levoxyl is T4 as is synthroid. T3 is made from T4. There are

> lab tests to see if you have conversion problems. However, if you

> have Hashimoto's thyroiditis any and all labs are not completely

> accurate. So you have to factor in symptoms.

> 3. Coldness and behavioral issues are best addressed by T3 (Cytomel

> is one RX name for it). If you are experiencing these symptoms and

> your T4 med is optimized, you may need to add T3 or switch to Armour.

>

> Be persistent with your doc if everything is not ok. My doc

> dismissed sad bouts as environmental/behavioral. It wasn't until I

> visited him during one that he finally listened. I have been " happy "

> for nearly a year now.

>

>

>

>

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There is synthetic T3 available: Cytomel, or from coumpounding

pharmacies, or switching from Levoxyl to Thyrolar, which is a

synthetic T3/T4 combo.

Jan

> Thank you so much for the information and feedback!

>

> Now. I'm still learning, but I think that when you say T4, that's

what's in

> the synthetic RX's (like Levoxyl, which is what I'm on). Levoxyl

doesn't

> have T3, I'd have to be on a natural thyroid, like Armour to get

that,

> right?

>

> My doctor did talk about another alternative to try, something that

is made

> out of pig thyroids, that we could try as well if this one didn't

work. I'm

> assuming that's what the natural is.

>

> I'm I getting it, at least a little? :-)

>

>

>

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Sorry I didn't get back to you. I really don't know the origin of these

problems but I do know that hormonal imbalance can make a person quite

crazy. In my family's case I think we all have adrenal hyperplasia. We

have low levels of certain hormones and hormones aren't getting into cells.

Docs have NO knowledge of this.

Gracia

> Hi , Please can you expand upon this tie-in. Are they

> theorizing that the deficiency is chronic in these cases so the

> hormonal imbalance causes it? Or is it the same gene abnormality

> causing both?

> Thanks!

>

>

>

> > That's because there is one!!! Gracia

> >

> > > However, I must add that these posts are starting to scare me. I

> see such a strong correlation between this disorder and schizophrenia

> > > and/or manic depression. I do not suffer from these, but it is

> > > strongly in the family tree.

> > >Cher

> > >

>

>

>

>

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Hi Annie, I have two pugs - a black named Ethel and a fawn called Wilma.

They were both rescues. You don't mention that you are under the care of a

rheumatologist. A good rheumy will be very familiar with PA and will work with

you

to help find the best medical regimen to treat the disease. There are a

number of good medicines out there today that not only work to ease some of the

symptoms, but they help to stem the progession of the disease. Among the best

medicines are methotrexate (MTX), Enbrel and Humira. You should be talking to

your rheumy about the pros and cons of these medicines.

Wishing you wellness,

Kathy F.

am a mom, I work part time as a

merchandiser for American Greetings, have 6 Pugs and am happy to

have found this site! any tips or tricks would be greatly

appreciated with how to deal with all this.

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Dear Annie,

Welcome to the group. I wish we all didn't have to meet under such horrible

conditions. You sound a lot like me with fibromyalgia for years and then I

fell about 6 years ago and life changed over night. At first I just thought

my fibro was acting up, but all my pain was in my jaw joint. It turns out I

dislodged the disc, arthritis set in and soon I was almost without a jaw

joint. I had one attempt at jaw surgery which failed miserably and only

increased my pain by tenfold. Still no one connected the rash on my arms

which I've had since the age of 10 with my arthritis pains. I ended up in

pain management due to all the jaw pain and then the pain started moving all

over, so we knew I was dealing with more than just one joint being affected.

After 5 rheumatologists I finally found one who put the rash on my arms

together with the aches and pains and told me I had PA. I wish I could say

things have improved since that time, but in the year I've had my diagnosis

I've not been able to tolerate any of the normal drugs. I'm just getting

over a bad sulfa reaction to Azulfadine and Enbrel nearly killed me after

only 5 injections.

It's hard to be a mom and deal with all of this. My girls are both 20 and

23 so I don't have little ones at home anymore, unless you count my yorkie

and 2 toy poodles. They do keep me going and have been my companions since

this all began. I don't think I would have made it without them either, so

I totally understand how you could have 6 pugs. I don't have any real

words of wisdom to pass on but I do have some pain tips I found on the

internet that I believe help me and my family. I've shared them before with

the site, but I'm mailing them just to you this time. I hope they help.

Our condition causes a lot of chronic pain and dealing with that is more

than half the battle. I do believe joining the pain clinic when I did saved

my life. At the time, I was suffering with constant facial spasms and

stabbing pain in my face and jaw. It was like a migraine in your face and

it never let up. Today it is better, but I have to be really careful of

what I eat and I know I'm looking at a total jaw replacement down the road.

My life has changed terribly in the past 6 years. I no longer work at all,

where I worked full time in our family business, I don't drive due the pain

in my feet and the pain medication, and most of the time it's all I can do

to make dinner for my family. I keep searching for a drug that will help

control the pain and inflammation and slow down the disease. That's the

other half of the battle I think.

Write me anytime you need to talk or just feel the need to vent. Take care

and good luck in your road to recovery.

Since so many of us deal with chronic pain on a daily basis, I

thought this article would be good to pass along. It might help to

give it to your loved ones when they have problems understanding

just what we go through on a daily basis. These are 12 tips that

might help someone out there.

Love, Fran

1. People with chronic pain seem unreliable (we can't count on

ourselves). When feeling better we promise things (and mean it);

when in serious pain, we may not even show up. Pain people need

the " rubber time " (flexible) found in South Pacific countries and

many aboriginal cultures.

2. An action or situation may result in pain several hours later, or

even the next day. Delayed pain is confusing to people who have

never experienced it.

3. Pain can inhibit listening and other communication skills. It's

like having someone shouting at you, or trying to talk with a fire

alarm going off in the room. The effect of pain on the mind can seem

like attention deficit disorder. So you may have to repeat a

request, or write things down for a person with chronic pain. Don't

take it personally, or think that they are stupid.

4. The senses can overload while in pain. For example, noises that

wouldn't normally bother you may seem too loud or glaring.

5. Patience may seem short. We can't wait in a long line; can't wait

for a long, drawn out conversation.

6. Don't always ask " How are you? " unless you are genuinely prepared

to listen - it just points attention inward.

7. Pain can sometimes trigger psychological disabilities (usually

very temporary). When in pain, a small task, like hanging out the

laundry, can seem like a huge wall, too high to climb over. An hour

later the same job may be quite okay. It is sane to be depressed

occasionally when you hurt.

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes

abates after a short rest. Chronic pain people appear to arrive and

fade unpredictably to others.

9. Knowing where a refuge is, such as a couch, a bed, or a

comfortable chair, is as important as knowing where a bathroom is. A

visit is much more enjoyable if the chronic pain person knows there

is a refuge if needed. A person with chronic pain may not want to go

somewhere that has no refuge (e.g. no place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a

person in pain. Your offer of a pillow or a cup of tea can be a

really big thing to a person who is feeling temporarily helpless in

the face of encroaching pain.

11. Not all pain is easy to locate or describe. Sometimes there is a

body-wide feeling of discomfort, with hard to describe pains in the

entire back, or in both legs, but not in one particular spot you can

point to. Our vocabulary for pain is very limited, compared to the

body's ability to feel varieties of discomfort.

12. We may not have a good " reason " for the pain. Medical science is

still limited in its understanding of pain. Many people have pain

that is not yet classified by doctors as an officially

recognized " disease " . That does not reduce the pain; it only reduces

our ability to give it a label, and to have you believe us.

My family thought this helped bring them just a little closer to

understanding what my life is like now. I hope it helps with your family.

Fran

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fran@... writes:

<<Our condition causes a lot of chronic pain and dealing with that is more

than half the battle. I do believe joining the pain clinic when I did saved

my life. At the time, I was suffering with constant facial spasms and

stabbing pain in my face and jaw.>>

Fran,

Sounds like you have your hands full. I understand how you feel. I just

can't take the constant pain anymore. I don't know if this is related to the

PA

but the last few days I have a shooting pain going up the back of my ear and

it hurts in my jaw area. I went to the chiropractor today and he said my neck

was all out of whack. It feels like a pinched nerve. The pain feels like

lightening. I have tried Anti-inflamatories and flexeril. If I keep heat on it

then it helps. I'm going crazy

Janet

Janet

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Dear Fran, thank you so much for your reply. I am grateful for all

the info I can absorb at this point. Yes, 4 legged children bring an

immense amt of comfort to all of us don't they? they seem to know

when you don't feel well, and they love me even when I am cranky

because of all this! I especially am grateful for the pain

information you listed. I am struggling to discuss this with my

children...grown 23 and 20 who have their own very active lives and

still think I should be Super Mom. My youngest 16 never asks a

question other then How was your day? and then proceeds to help with

whatever chore with no complaining! the oldest two are very worried

and concerned, especially my 20 yr old..she is a Student Nurse and

is in Nursing School. But nonetheless, they are young, and I think a

bit in denial. My hubby is amazing. We are first loves that reunited

after almost 20 years apart, will be married 10 years this April.

After I was diagnosed, I called him from the parking lot of the Dr's

office and told him to get out while he was still young enough to

have a life. He is a thru and thru Southeastern Georgia boy with an

accent you can cut with a knife, and he responded " well babe,

you're going to have to come up with something better then that to

run me off " . yes, I am blessed with great kids (2 legged and 4) and

a wonderful husband. the rest of the family....well, we won't go

there. I am especially troubled by my wierd hand thing right now. I

have been reading it is pretty normal, but is a new symptom for me.

They just feel like they are tight, and feel odd at times. Like you

want to shake them..but don't because it does not feel so great! of

course our weather is not helping. It is very cold, snowy and icy

off and on right now in IN. I see the Derm this month and will be

seeking an appt with a Rheum, one who has a great rep for dealing

with Arthritic issues.

It not only scares me from a future prospective, but also a

financial one. My hubby works for a small company, and I am worried

we will break the insurance bank by the time we are done.

again, thank you for your words of wisdom.

annie and pugs!

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Hi Kathy, first and foremost, it is always wonderful to meet a new

Pug friend!! way to go on your rescues! we have 1 rescue, Maggie

Monkey Moo, she is wonderful. I bred for over 15 years, then

stopped. People were buying them for all the wrong reasons, and one

of my puppies MIGHT have been in the Humane Society..that was enough

for me. Fortunately it was adpoted right away, and when I found out,

was in a good home. anyway, we kept Mom, Dad, and a sibling set 1

male, 1 female off our last litter, (coco, pj,levi and millie) then

Ringo was my bday present 2 years ago. They are amazing little

creatures. I would have 100 if I could.

anyway, thanks for your response. I have a Derm appt this mo and

expect to be seeing a good Rheum followig this appt. She, the Rheum

has an amazing rep for treating Arthritic diseases as her specialty.

I am scared, I will not deny this. I have such wierd things that

happen for no particular reason, and it is as you all know, so

frustrating to no longer feel in control of what is developing. I

get orthotics for my shoes sometime this mo too. I did the

impressions a week ago. I am hoping this will help with my left heel

pain. I have written down the names of the drugs you mentioned. I

was on celebrex for awhile, it helped then the weather turned warm

and I stopped taking it. Then when I needed it again, took it and

had an allergic reaction to it! of course this was a year ago when

we thought it was mild arthritis/joint pain. I then went on Bextra.

AWESOME drug! really, really helped. Then we lost our insurance as

the company shut it's doors after 19 years no warning, and the new

job/new ins will NOT pay for Bextra unless I am 65 or older. which

of couse stinks. i try , yes try!! to control the stress levels. I

notice a direct link to the flares of my pain, and the P when I am

upset or majorly stressed. It has been a tough 12 mos or so with my

hubby having to change jobs, my 2 oldest moving out, and the offical

diagnosis of all this. BUT , I am blessed to have wonderful kids (

though the oldest are still coming to terms with all this!) and my

hubby is amazing. I value all 3 kids, all 6 4 legged kis and my

hubby so much. I just hope this will not ultimately take too big a

toll on all us. I don't remember who it was, but I read a post from

a husband who sounded so wonderful and supportive of his wife. He

commented that all he wanted her to do was meet him halfway. I have

stored that away in my brain to remember with the kids and hubby! it

is true I think. Sometimes I suffer from supermom syndrome and don't

like to take help. That is changing. thank you for you kind words

and advice, I hope you ALL feel well and have better days

annie and pugs

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Dear Janet,

I hope you can find a pain doctor to help you. It really does make a big

difference once you can get a handle on the pain. I'm not saying I'm pain

free, far from it. At least now I don't go out of my mind and want to run

out in traffic anymore. There were days when life wasn't worth living with

the pain levels that high. I really did think I was going crazy too. You

start to doubt yourself and your sanity when all you can think of is pain.

If your family doctor can't help you, then at least ask them to refer you to

a clinic who can. Like I said before you might not like the first doctor

you meet or it may take a while for you to trust him. I know it took ages

for me to get where I am today. They don't start out just throwing drugs at

you, they increase them slowly and each month I got a little better.

Like I said I still have pain. Someday it's almost as bad as it used to be,

but normally that is when I have over done it or I'm having a really bad

flare day. I've found I can survive with my pain medication now. I still

don't get a lot accomplished and to do more, like work or clean my house,

I'd have to increase the pain medication. I'm lucky that I can afford to

not work and I keep planning on getting some cleaning help. I had it once

and it got to the point I was cleaning before they came to clean...talk

about dumb..lol. Now I'm not like that, at least I hope I won't be. I do

worry that I put too much on my husband, but so far he is surviving my

illness as well. He has gone to the pain clinic with me several times and I

think it helps for the doctor to hear from your family members at times.

They need to see as much of your family life as possible.

Good luck and try not to let it control your life. You deserve to have your

pain controlled. We have really weird standards in our society about

" toughing it out " when it comes to pain. It's so stupid if you think of it

that way. All chronic pain does is run you down and make you less able to

deal with your main illness. Our medical society has succeed in so many

ways, and yet with this one thing you still run up against ignorant people.

(I had a nurse ask me the other day, what I take for pain and when I told

her, she was shocked. So I explained how my joints are gone and my jaw is

in constant spasms and I have chronic facial nerve pain and she shut up.)

The point is I shouldn't even have to do that, they should understand and

she was a rheumatolgy nurse!

Just take care of yourself and do what you have to, to survive. Like I said

you don't deserve to live in constant pain, no one does. Good luck and let

me know how you are doing, Ok. Sincerely,

Fran in Florida.

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In a message dated 2/4/2004 3:20:23 PM Eastern Standard Time, fran@...

writes:

Like I said I still have pain. Someday it's almost as bad as it used to be,

but normally that is when I have over done it or I'm having a really bad

flare day. I've found I can survive with my pain medication now. I still

don't get a lot accomplished and to do more, like work or clean my house,

I'd have to increase the pain medication.

Thanks for your kind words, Fran. I think my next step will be to a pain

clinic. The only think that I am afraid of is getting so used to the pain meds

that they have to be increased all the time due to building up a tolerance to

them. LIke now, on the nights that I take Vicodin I have a decent sleep.

There are some nights that I don't take it and don't sleep as well but my

reasoning is that I won't build up a resistance to it. What meds are you

taking

Fran and thanks again for your support.

Janet

Janet

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Hi New gang (, , & Ken) and welcome,

Hope I didn't miss anyone. I've been a bit busy recently so I'm just

catching up. Hope the group helps you in your quest for better days. You will

get

good advice when you are looking for it. It is also good to know you can tell

people here how you feel and there is a good chance at least someone will know

what you are going through, more so than family and friends no matter how

well intentioned and sympathetic they are.

Good luck all,

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Hi , you missed me, but I am sort of lurking here! I am in the midst of

quitting smoking so I am half out of my mind on top of everything else.....I do

read all the posts though, and love the website too! Thank you all for your

words of wisdom, I am learning something new everyday!

Re: [ ] newly diagnosed

Hi New gang (, , & Ken) and welcome,

Hope I didn't miss anyone. I've been a bit busy recently so I'm just

catching up. Hope the group helps you in your quest for better days. You

will get

good advice when you are looking for it. It is also good to know you can

tell

people here how you feel and there is a good chance at least someone will

know

what you are going through, more so than family and friends no matter how

well intentioned and sympathetic they are.

Good luck all,

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Hi ,

Sorry I missed you and also took so long to get back to you. Hope you manage

to quit smoking. I have never smoked but I know from friends and relations

that its not easy.

There is an old joke about that. " Quitting smoking is easy.............I've

done it HUNDREDS of times! "

I wonder how many of us said to ourselves when we found this group. " I'm

just going to read the posts but won't actually say anything. " Then someone

will

say something that strikes a chord and you've just got to answer. That was

me about three months ago!

Hope you are well (Always a silly thing to say. You probably wouldn't be

reading this if you were well, but you know what I mean.Lol)

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The first thing I would ask your RD is, if you are fighting an infection all

of the time why are you starting Enbrel? I would definitely have them run

some test to find out the nature and source of the infection. It can be

very dangerous to start Enbrel with an infection. Also, you want to make

sure you don't have reactive arthritis which is the rare case that can

actually be cured with antibiotics. My PA is mostly manifested in my hands

also and I am on Enbrel. I would not start Enbrel with an infection. I'm

careful to the point that skip a dose if I have my teeth cleaned. Make sure

they check you for TB before starting Enbrel. Go to the Immunex site and

read the literature. Enbrel has been a miracle drug for me but you have to

be aware and educate yourself. Especially when your RD and your MD are

contradicting each other.

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debmcq <debmcq@...> wrote:I was just diagnosed with PA and will be starting

Enbrel therapy soon.

I have had arthritis for many years but I'm told that PA is different than the

arthritis I have previously dealt with. I can see that since the pa is far worse

and it is disabiling.

I have had the symptoms of PA for about 3yrs prior to my diagnosis. It just

finally got so bad I went to a rheumatologist. I had never had psoriasis and

developed that in the last 3 yrs luckily it isn't too bad yet. And boy was that

a flag to my rheumy.

Someone mention that this affects the glands, my glands are constantly swollen.

My primary doc says I'm fighting an infection but ALL THE TIME. I guess this

makes sense with an auto immune disorder.

How fast does this disease progress? Because now that it is active it appears to

be moving quite quickly on me. I'm looking forward to Enbrel therapy I was glad

to read that enbrel can actually put this into remission.

Any advise would be greatly appreciated.

Thank you deb darlene

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Thank you for your response. My rheumatologist had all of the tests ran on me

including TB. I'm fine, but I haven't brought up the swollen glands to him. I

guess I better.

I am currently fighting a sinus infection and made him aware of that. He says to

get clearance from my pcp before starting the enbrel.

Since I last wrote I had a really bad flare up in my right shoulder. My fingers

and right wrist hurt all the time. My major concern is its progression. I know

its probably different for everyone. How had your pa progressed before enbrel.

Deb Darlene

Re: [ ] Newly diagnosed

The first thing I would ask your RD is, if you are fighting an infection all

of the time why are you starting Enbrel? I would definitely have them run

some test to find out the nature and source of the infection. It can be

very dangerous to start Enbrel with an infection. Also, you want to make

sure you don't have reactive arthritis which is the rare case that can

actually be cured with antibiotics. My PA is mostly manifested in my hands

also and I am on Enbrel. I would not start Enbrel with an infection. I'm

careful to the point that skip a dose if I have my teeth cleaned. Make sure

they check you for TB before starting Enbrel. Go to the Immunex site and

read the literature. Enbrel has been a miracle drug for me but you have to

be aware and educate yourself. Especially when your RD and your MD are

contradicting each other.

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Hi Deb and welcome.

I'm jealous, you having two types of Arthritis and I only have one.Lol

Although I'm stupid too so that makes up for it. Seriously though, hope the

group

helps. Sorry I can't answer any of your questions but I'm sure someone will.

Take care,

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Dear Deb, I've been following your emails because of your swollen glands. I

have the same problem now and it's driving me crazy. I was wondering are

your glands swollen on both sides? Mine seems limited to my left side and

even the left side of my throat is sore. Even the skin is sensitive to the

touch. Do you think your swollen glands are related to your PA? Has your

doctor ever mentioned that as a possibility? My doctor thinks my glands are

swollen either from PA or from being on predinsone for so long. All I know

is it's one symptom I'd love to get rid of. If you find anything out or

your doctor gives you an answer, please let me know. I'll be sure and let

you know if I get some answers at my end as well.

In the meantime, I hope you start feeling better soon. As far as

progression, my PA advanced really quickly at first. It started in my jaw

joint on the left side and within 2 years the joint was totally destroyed.

It is still degrading constantly, but I'm holding off on surgery to the last

possible moment. Replacing a jaw joint isn't an easy surgery to go through

and the outcome most of the time isn't considered successful, so I'm in no

hurry to see the surgeon again. I had minor arthoscopic surgery done when

it first started bothering me and it increased the pain by 10 times. I've

had PA for 5 years and have only been diagnosed with it for about 18 months.

In that time, I've had bone spurs pop up on my facial bones, spine, knee

joint and all over my feet and toes. My jaw is in danger of fusing together

now and when that happens I will have to have the surgery. So the sooner

you can slow down the disease the better. Most of my pain now is dealing

with the damage done to my joints, since it took so long to get a diagnosis.

Even now, I have trouble taking any of the medication that seems to help PA

the most. Enbrel made me really sick and caused my glands to swell

terribly. It took me at least a month to get it out of my system and I

think I only had 5 injections. Humira nearly killed me with respiratory

distress. I have asthma and I couldn't breath right for almost 2 months. I

had to increase my predinsone to 60mg and now am dealing with Cushing's

syndrome from the high levels of predinsone and trying to get off the drug.

Luckily, my experiences with the biologic drugs aren't typical of most

people. They just aren't for me, but they seem to work miracles for many

people. I hope you are one of the lucky ones that they help.

Take care and good luck with everything. Sincerely, Fran

Re: [ ] Newly diagnosed

Thank you for your response. My rheumatologist had all of the tests ran on

me including TB. I'm fine, but I haven't brought up the swollen glands to

him. I guess I better.

I am currently fighting a sinus infection and made him aware of that. He

says to get clearance from my pcp before starting the enbrel.

Since I last wrote I had a really bad flare up in my right shoulder. My

fingers and right wrist hurt all the time. My major concern is its

progression. I know its probably different for everyone. How had your pa

progressed before enbrel.

Deb Darlene

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