newbie

[Guest guest]

Sounds

like you got a plan. That’s good. A shocking number of PCP’s are fairly

ignorant about hcv. Good you are type 2, they are easier to treat and usually

are recommended a shorter course of treatment. (24 as opposed to 48 weeks) -dz-

-----Original

Message-----

From: Lance Rommerdahl

[mailto:lrommerdah@...]

Sent: Saturday, January 31, 2004

11:43 AM

To:

Subject: [ ]

NEWBIE

I had my left hip replaced 10/02 when they dicovered that I had

Hep

C. They told me 2 have it checked out. I did & my PCP told

me it

was " dormant. " Oct '03 I had my annual & my liver

functions were

out of line. Referred to gastro. Well, I have genotype 2a and

very

active. No I did not the numbers like some of u. Got my

meds this

week. And after being off alcohol for 3 months; I will start tx on

2/10.

Meds: Interferon & Ribaveron (sp?)

Been working out alot. Always have. Been putting in a big effort

last 3 months. Been told to continue working out so I have been

lining up people to encourage me to continue to work out.

Put in a Claim w/ the VA. Getting the typical red tape. Read

70%

of all hep c casses r vietnam vets, like me.

Lots of pressure, anxiety.

[Guest guest]

Dear Newbie,

Welcome to the group and I’m sorry we all meet under such painful

circumstances. This is a great group though and I think you will learn a

lot as well as make some new friends.

I’ve been on a low dose of predinsone for over a year now. Most doctors don

’t like to prescribe it since it has so many side effects. If they do give

it out, it’s normally a short-term dose, just to see if we respond to the

drug or to hope to break the inflammation cycle.

For me it’s the only thing I’ve been able to tolerate, since most of the

other medications have made me sick or I’m allergic to them. The side

effects are miserable with predinsone. Yet when it comes to stopping it or

cutting back below 15mg I end up in horrible pain. That’s not to say that

the pain isn’t there even with the predinsone, but the difference is I can

walk with the predinsone and I can’t walk without it. As far as the side

effects, it makes you gain weight, increases your hunger, it can cause

cataracts (and I have one already on one eye, and I’m only 48), and it can

damage your skin and your bones. You can be tested for bone loss and find

out if you are in danger of forming osteoporosis. So you can watch out for

the main side effects. It also makes me nervous and jumpy at times. If I

can keep it at 15mg it’s not too bad, but when I have to increase the

dosage, I really notice the difference.

It is frustrating to not have a test that gives us a definite answer. I

guess I have been dealing with that for years since I was diagnosed with

fibromyalgia. Some things simply don’t show up in our blood work, but that

doesn’t mean they don’t exist. Just reading the symptoms of everyone in

this group will help you realize you are in the right place. I was amazed

how many people have the same problems I do or pain in the exact same

location. Also if you respond to some of the medication, it’s a good sign

you are on the right track as well. After going for 5 years without a

rheumatologist knowing what was wrong, I was thrilled when one finally got

it right. Now I’m trying to find a medication I can take that will help me

without all the side effects of predinsone. I just started treatment with

Humira and so far have only had the first injection. I had 3 days where I

felt pretty good, but things are going back to “normal” now. At least I am

still hopeful that this might be my answer and I simply need to build up a

level in my body to feel the effects for longer. I’ve gone through a ton of

drugs and have been allergic to the drugs or they simply didn’t help me.

I hope your doctor has some of the other medications in mind to help you.

Normally, they don’t just put you on predinsone, but keep trying to find

something else that works too. Either way, don’t be afraid to ask your

doctor about it and find out what his goals are for you.

Good luck and I hope things improve for you now. I know how miserable this

disease can be and how it can totally stop your life. I have given up more

freedom and more of my life than I ever thought would be possible. My

biggest problem now is keeping my spirits up while dealing with all of this.

Lately, I’ve been better and like I said I have some hope again now. Write

me anytime you want someone to talk too and I hope things improve for you

soon. Love, Fran PS WELCOME!

[Guest guest]

-Welcome Newbie!!! Glad to have you here but sorry about your

diagnosis. Unfortunately, diagnosisng pa consists of looking at

symptoms and ruling out other diseases...sounds like exactly what

your docs did. If psoriasis is present along with the swelling and

joint pain...diagnose psoriatic arthritis. If ra factor is present

with same symptoms, no psoriasis....then rheumatoid arthirtis may be

diagnosed. Some Docs look at sed rates and c-reative protein to get

an idea if there is inflammation going on. we have noted in our

board that sed rate doesn't always seem to correspond to how severe

the pa is.

I was on 10 mg prednisone temporarily. Unfortunately, it didn't help

me much at that dose. short term higher doses help me. I know it

helps some people and there are some studies that suggest that dose

may be safe....I am leary of prednisone's side effects myself.

Have you checked out psoriasis.org and spondylitis.org? They are

good info sites. If your pain is in the back you could have the pa

spondylitis subset.

looking forward to your contributions here.

Best wishes,

Marti

[Guest guest]

Dear Mookie

my mom has RA and has been on prednisone for at least 6 years - the only bad

side effect she has told me about is the cataracts - she does have in both eyes

- I was very skeptical when my rheumy put me on it for my PA - but i am taking

it along with mtx and now humira symptoms seem to be getting better - but i hope

it stays going in this direction

best wishes

[Guest guest]

> he has amino acid in his urine -methylhistidine but not serious. it

> was found during testing at the autism clinic and just noted on his

> chart. nothing ever said to me so must not be too serious.

He might need an enzyme to break down proteins better.

> he has very poor muscle tone. i have put him swimming through

> special olympics to help but he still cant walk far or play without

> tiring out way before his peers.

>

> he has poor endurance- he cant do any physical activity for any

> amount of time.

For some kids, carnitine helps with this.

> he moves constantly like back and forth and twist his hands around.

>

> he still has lots of sensory issues.

Consider phenols and/or No-Fenol enzyme

http://www.danasview.net/phenol.htm

http://www.houstonni.com/

Dana

[Guest guest]

ENJOYYYYYYYYYYYYY!!!!

Mandi in UK

I have just started my AS son on Peptizyde (last Sat) and today I feel as

though I have

> slipped into a parallel universe as everything seems the wrong way round.

> My son is cutting the grass, doing the ironing, hoovering, grooming the dog

> and now has just gone out for a cycle ride?????

> This is a boy who would not walk anywhere or leave the house willingly and

> would certainly not do any of these jobs. Fingers crossed it is the enzymes

> and not just a one off! Anyone else had this?

>

[Guest guest]

Hi

I have just started my AS son on Peptizyde (last Sat) and today I feel as though

I have slipped into a parallel universe as everything seems the wrong way round.

My son is cutting the grass, doing the ironing, hoovering, grooming the dog and

now has just gone out for a cycle ride?????

This is a boy who would not walk anywhere or leave the house willingly and would

certainly not do any of these jobs. Fingers crossed it is the enzymes and not

just a one off! Anyone else had this?

Sally

Re: Newbie again, dosing questions

> > One last question, how do I know when the yeast problem is gone?

>

>

> For my kids, the behaviors and/or bm problems are gone

>

> http://www.danasview.net/yeast.htm

>

> Dana

Thanks Dana.

VickiB

[Guest guest]

We started on the same day as you did. (last Sat.) We have experienced nothing

short of a miracle. The latest incident occurred today. (age 6) used

to be so scared of climbing up or down anything. Today she was at the doctor's

office for a checkup. She was getting off the table on to the stepstool. The

doctor accidentally had pushed the stool under the table a few inches. This

left my daughter with only an inch or two to tiptoe down. She made it to the

top step but fell when she went to the second step. She fell backwards! She

turned her body in midair and somehow landed on all fours! It was like watching

a cat. When I asked her if she was hurt she said " I'm ok, I landed on my

hands. "

In the past, she would have been frozen on the table in fear. The first step

would have increased the fear, and the fall would have been catastrophic. The

pain would have been tremendous, and there would have been an hour's worth of

crying. We are overjoyed with the results we've been getting.

Dennis Keegan

dpkeegan@...

gokeegans@...

Re: Newbie again, dosing questions

> > One last question, how do I know when the yeast problem is gone?

>

>

> For my kids, the behaviors and/or bm problems are gone

>

> http://www.danasview.net/yeast.htm

>

> Dana

Thanks Dana.

VickiB

[Guest guest]

Yes it is amazing the changes in my son still since starting the enzymes. He

has stopped playing the computer non-stop and missed Simpson last night with no

problems which normally would has caused a melt down! He wanted to be in the

lounge where everyone was coming and going instead of alone in the computer

room. He wanted to watch real life type programmes like estate agents,

gardening, change your life type programmes instead of cartoons. All very

strange but lovely. Oh and by the way he managed to go to the toilet with no

problem which is a very rare occurance.

What can I say except WOW.

Sally

Re: Newbie again, dosing questions

> > One last question, how do I know when the yeast problem is gone?

>

>

> For my kids, the behaviors and/or bm problems are gone

>

> http://www.danasview.net/yeast.htm

>

> Dana

Thanks Dana.

VickiB

[Guest guest]

I think thats a double wow Sally

Mandi in UK

> Yes it is amazing the changes in my son still since starting the enzymes.

> He has stopped playing the computer non-stop and missed Simpson last night

> with no problems which normally would has caused a melt down! He wanted to be

> in the lounge where everyone was coming and going instead of alone in the

> computer room. He wanted to watch real life type programmes like estate

agents,

> gardening, change your life type programmes instead of cartoons. All very

> strange but lovely. Oh and by the way he managed to go to the toilet with no

> problem which is a very rare occurance.

> What can I say except WOW.

>

[Guest guest]

That's absolutely fantastic. Of course I'm congratulating you, but for your

daughter, I imagine quite liberating.

Re: Newbie again, dosing questions

>

>

>

> > > One last question, how do I know when the yeast problem is gone?

> >

> >

> > For my kids, the behaviors and/or bm problems are gone

> >

> > http://www.danasview.net/yeast.htm

> >

> > Dana

>

> Thanks Dana.

>

> VickiB

>

>

>

[Guest guest]

-Hi Jerre,

welcome! You have not written too much. The more people write the

easier it is for all of us to respond. I found your note

interesting. I am sorry about your husband's friend. It does put

things in perspective. Could you explain how the PT does myofascial

release? I have fibro and myofascial syndrome on top of pa and think

it might be good for me.

Best wishes,

Marti

-- In , " jerredawson "

<jerredawson@m...> wrote:

> Hi,

>

> I am new to the group, been lurking for about a month but felt

since my symptoms are so

> much less that everyone else I didn't have too much to add. My

rheumy is wonderful, at

> the Institute for Autoimmune diseases in NYC and diagnosed me at

once from the

> inflamed tendons in my palms. The blood test showed the genetic

marker to confirm his

> diagnosis. There is no history of psoriasis in my family nor do I

have it. As a gymnast for

> 20 odd years I have always had tendon problems, assuming it was all

from that. I just tell

> people that I have sero-negative ra that attacks the tendons and

bursa.

>

> However in the last several weeks I had tendonitis and bursitis in

both hips and had both

> cortison injections and was on prednesone for 6 days: 30mg, 30mg,

20mg, 20mg, 10mg,

> 10mg. I also experienced an increase in energy and, while I am on

South Beach to

> stablilize low blood sugar, I seem to have lost even more weight

than expected. (21

> pounds over a three week period.)

>

> I also find physical therapy with myofacial release is invauluable,

especially for the three

> day headaches I used to get that were from tendonitis in my neck

and upper back.

>

> I also reached the two month " anniversary " of giving myself

injections of methotrexate

> (25mg) and, all most overnight, can now get up in the morning and

walk downstairs

> without clutching the bannister and can get up from a chair or out

of without limping the

> first few steps. I do take 20mg of bextra at night and 150mg of

effexor xr. My psychiatrist

> just prescribed ambien since I hadn't had more that two hours of

sleep in a row over the

> last three months. My husband teases me that I am a walking

pharmacy but he is

> overjoyed at the results but keeps warning me not to overdo. That

is the hardest part. I

> want to do everything while I still can. I usually overdo because

of that. I have 18 year old

> twin boys who will be leaving for college in the fall and I just

want to spend as much

> quality time with them as I can.

>

> Self pity is not an option as my husband's best friend is dying of

ALS which he contracted

> at 45. That has given me the strength to enjoy life and do things I

would never have

> thought of doing before. Watching his strength and determination

and humor over the

> last five years has given me a role model, but also a tough act to

try to follow. I often feel

> that I can't complain in the face ofhis courage.

>

> Well, I guess I had more to say than I thought. Hope it isn' too

much.

>

> Thanks,

>

> Jerre

[Guest guest]

Hi Jerre and welcome,

I wouldn't worry too much about my symptoms being less than anyone here. You

might read something or get some advice that in the long run stops you from

getting as bad as some of the people in the group (Get the stable door shut

before the horse bolts eh? Lol)

Do you still do the gymnastics or have you had to give it up? I know how

hard that is. I was an Athlete........No....No, that's not right....I am an

athlete (Just can't run anymore. Lol) People ask me if I think that could have

contributed to the Arthritis. The answer is no as far as I'm concerned (Lying

drunk in the snow as a teenager might have though. Lol)

On a more serious note, I am sorry to hear of your husbands best friend. You

are right. As bad as we feel because of this disease, most of us won't need

to look too far to find someone far worse than ourselves.

Hope you find what you are looking for here.

Take care,

[Guest guest]

Hello Lauie! Welcome! I am new here too! Just joined today.

I just wanted to let you know that you are not whiney at all.

I can understand what you are going through and it makes me sad to others

suffering, even worse than me.

I will keep you in my prayers.

I look forward to getting to know you better!

HUGS,

Heath &

Proud parents of

Heath (5)

Lauryn (3)

[Guest guest]

Dear Laurie, I agree that 30 years of pain is enough. Lets face it, any

amount of pain is enough if you are the one suffering with it. My problems

started years ago and I think I've been in chronic pain for over 25 years,

so you have me beat. Mine hasn't gotten to the critical stage until the

last 5 years. One thing I can suggest and I'm starting to feel like the

poster child for Pain management, but it really did help me and saved my

life at the time. I don't know if you have a good doctor in your area, but

it can make a world of difference once you get the pain under control.

I'm sorry about the number of miscarriages you went through. That has to be

impossible to deal with and so hard on your body. I was lucky my girls were

born before my health really got bad. I feel bad sometimes that I can't be

a " normal " mom to them, but I've decided there isn't such a thing anyway.

The most important thing for a child is that you simply be there and to

listen to their problems regardless of their age. As long as mine still

need me for that, I've got a real purpose in my life.

the fatigue is a real problem and I agree can be worse than the pain at

times. Some people have luck with provigil, which is a fairly new drug for

fatigue. it's normally given for sleep disorders or for people who

constantly fall asleep. I've tried it at times and thought it helped,

though it can raise your blood pressure. Arava has helped me the most with

fatigue, though I'm going through a bad flare right now that has everything

involved.

I hope you find some answers here and make a few new friends. The group is

great and full of compassionate, smart people and it's fun to read the

listings if nothing else.

Anyway, I'd write more but my hands are bad right now. Welcome to the group

and I hope you find some help. love, Fran

[ ] Newbie

Hello:

I am a 35 yr old female. I developed psorisis when I was 6 and the

arthrits when I was 7. I so hate this disease. I have 3 children

and have adopted 2, so I am a mother of 5. Due to my immune system

I have had 13 lost pregnancy's. Usually lose the babies in my 4 to

5th month. The doctors say that my body not only doesn;t like my

skin and joints but attacks my babies too. I have good days and bad

days, right now I have been stuck on bad for a few months. I just

got taken off of predisone, I was on it for 2 yrs but it was

starting to destroy my heal tendons. I also was on Vioxx but have

been switched to Bextra. I am taking lortab for the pain. I am

waiting to see a rheumatoligist in December. The one in our area

quit last year and Kansas doesn't have very many. I am hoping he

will get me set up and I will feel better.

I am trying to go a healthy route of getting better. I do notice

that food makes a big difference for me.

My psorisis is under my nails and every where but my face (which I

am thankful for)

Cortisone shots help alot when I have a super bad flare up on a

joint, but right now I think all my joints hurt but not one

praticular one.

I am tired alot. I hate being tired, I think the tired part it my

least favorite thing. I just want to have the energy to play with

my kids.

Well I hope I don't sound whiny, I do keep a smile on my face, and

try to understand why this won't go away. I think almost 30 yrs of

pain is enough.

Laurie

[Guest guest]

Hi Laurie. My personal experience was that the Bextra messed with my ability

to reach deep sleep, so I was tired allllllll the time, feeling exhaused,

irriated and frustrated. Don't know if anyone else has experienced that, but

I did.

So sorry to hear about your body rejecting your 13 tries, that must have

been so disheartening, that your own body was attacking the fetuses. Amazing

what our body can do when it's not working tip top, eh?

Keeping up the smile is the important part. Try to rule your pain, don't let

it rule you. I know sometimes it's difficult. Exercising the affected joints

can help to keep some of the stiffness away, I've found. I find that it's

when I don't exercise that it hurts so much more.

Good luck, and bright blessings, Laurie

Crystal

>From: " momlaurie87 " <tilly@...>

>Reply-

>

>Subject: [ ] Newbie

>Date: Mon, 08 Nov 2004 16:48:31 -0000

>

>

>

>Hello:

>I am a 35 yr old female. I developed psorisis when I was 6 and the

>arthrits when I was 7. I so hate this disease. I have 3 children

>and have adopted 2, so I am a mother of 5. Due to my immune system

>I have had 13 lost pregnancy's. Usually lose the babies in my 4 to

>5th month. The doctors say that my body not only doesn;t like my

>skin and joints but attacks my babies too. I have good days and bad

>days, right now I have been stuck on bad for a few months. I just

>got taken off of predisone, I was on it for 2 yrs but it was

>starting to destroy my heal tendons. I also was on Vioxx but have

>been switched to Bextra. I am taking lortab for the pain. I am

>waiting to see a rheumatoligist in December. The one in our area

>quit last year and Kansas doesn't have very many. I am hoping he

>will get me set up and I will feel better.

>

>I am trying to go a healthy route of getting better. I do notice

>that food makes a big difference for me.

>

>My psorisis is under my nails and every where but my face (which I

>am thankful for)

>

>Cortisone shots help alot when I have a super bad flare up on a

>joint, but right now I think all my joints hurt but not one

>praticular one.

>

>I am tired alot. I hate being tired, I think the tired part it my

>least favorite thing. I just want to have the energy to play with

>my kids.

>

>Well I hope I don't sound whiny, I do keep a smile on my face, and

>try to understand why this won't go away. I think almost 30 yrs of

>pain is enough.

>

>Laurie

>

>

>

>

>

>

[Guest guest]

Hi,

I thought that was me talking there for a minute...lol..Yes I know exactly what

you mean I have those breakdowns too...I was just diagnosed less than 2 weeks

ago but have hurt a long time...I have gone to several docs good and bad...I now

have a good rheumie who also listens thank the Lord...Just know you can cry,

stomp, snort or whatever you need to do here and it will be ok with us...I know

it will be ok with me...

I have a long drawn out story that you can read in the archives just

recently...I am in North Ms...Howdy Neighbor....

I hope you continue to have good days...I will be starting enbrel soon...I hope

if my ins. cooperates...

Sincerely,

Vickey

d

[Guest guest]

Hi Debi,

A belated welcome to the group. Yeah you have come to the right place.

Plenty of info and it is true that nobody understands quite like a fellow

sufferer. I have just started on Enbrel myself. No real difference so far apart

from

feeling a bit more energetic. I might even get up out of my bed tomorrow.

(Only joking. I am not THAT bad nowadays)

Take care.

[Guest guest]

----------------------

Welcome aboard! I am sure you will as good about the many

wonderful and helpful people here as I have since I joined.

best wishes

norton

[Guest guest]

Welcome wulfgarrr,

That's nature's way of reminding us not to skip doses.

It's great to have a doc who's open. A key document to give him

is the AACE Hypogonadism Guidelines, the first document in the

files section here. If he reads that he'll know more about

hypogonadism than many board-certified endocrinologists.

Bruce

>

>

> Hi folks,

>

> I'm new here. It took me a while to read back through all the

old

> archived messages, or I would have introduced myself last

week!

>

> I've been hypogonadistic (primary) for about 4 years now. I'm

34

> years old.

>

> My doctors have had me on the T patch, T gel, and now T shots

IM.

> The patch was a pain in the ass, the gel was too messy and

time

> consuming. Now I'm taking the shots, and they're much better.

>

> When I take them, that is... Last week I was nearly suicidal,

and

> very emotional. I hadn't had my shot in about a month. My poor

wife

> nearly ripped my pants off trying to get me in the bathroom for

my

> injection. I feel a lot better now. Gotta keep up with those, or

> life stinks.

>

> I've learned a lot already just this week after reading the

archived

> messages. I know that my 100mg every 7 days is the way to

go. I

> know that I should be keeping my lab tests, and also telling my

doc

> to test me for Estradiol. He's already agreed to make copies of

all

> my old blood work, so after next week, I'll have some numbers

to post.

>

> My doc is nice. He freely admits he knows very little about my

> condition, and that's what makes me stay with him. He doesn't

have

> that doc ego; " I know what's best for you. " Because he admits

he

> doesn't know, he's willing to try many things I suggest.

Reading

> this group looks like it's going to help me suggest the proper

things.

>

> So, I've rambled enough. I'm damn glad to be here, amongst

people

> who know what I'm going through. I thought I was all alone.

I'm

> also glad to have a gameplan after reading through the old

posts. It

> helps me feel like I'm working towards a goal, instead of just

> managing by crisis.

[Guest guest]

Hi,

While you are trying the various different therapies, you should

consider the one that has been out there quietly for more than 10

years and is trouble free.

Hormone pellets have been used to treat men with andropause for

decades but only by a few doctors have that training. Dr. Greenblatt,

now deceased, of Augusta GA taught a large group of endocrinologists

who are now mostly in their 70's if they are still practicing.

I travel down every 4 months from NY and stay overnite with my son and

travel on over for my appointment with Dr. R. Don Gambrell in Augusta.

The wife also has received both E and T pellets for more than 10

years. Hollywood found these pellets and traveled in regularly by air

from CA in te 70's and 80's.

I get 20 - 75mg pellets under the skin every 4 months with on other

patient involvement. The cost is about $450 and medicare picks up most

of it in that area. Not so in other parts of the US for some reason.

Feel great and at 73 plan to continue.

ernestnolan

>

>

> Hi folks,

>

> I'm new here. It took me a while to read back through all the old

> archived messages, or I would have introduced myself last week!

>

> I've been hypogonadistic (primary) for about 4 years now. I'm 34

> years old.

>

> My doctors have had me on the T patch, T gel, and now T shots IM.

> The patch was a pain in the ass, the gel was too messy and time

> consuming. Now I'm taking the shots, and they're much better.

>

> When I take them, that is... Last week I was nearly suicidal, and

> very emotional. I hadn't had my shot in about a month. My poor wife

> nearly ripped my pants off trying to get me in the bathroom for my

> injection. I feel a lot better now. Gotta keep up with those, or

> life stinks.

>

> I've learned a lot already just this week after reading the archived

> messages. I know that my 100mg every 7 days is the way to go. I

> know that I should be keeping my lab tests, and also telling my doc

> to test me for Estradiol. He's already agreed to make copies of all

> my old blood work, so after next week, I'll have some numbers to post.

>

> My doc is nice. He freely admits he knows very little about my

> condition, and that's what makes me stay with him. He doesn't have

> that doc ego; " I know what's best for you. " Because he admits he

> doesn't know, he's willing to try many things I suggest. Reading

> this group looks like it's going to help me suggest the proper things.

>

> So, I've rambled enough. I'm damn glad to be here, amongst people

> who know what I'm going through. I thought I was all alone. I'm

> also glad to have a gameplan after reading through the old posts. It

> helps me feel like I'm working towards a goal, instead of just

> managing by crisis.

[Guest guest]

Hi ernestnolan,

I'm glad you mentioned this, because I saw previous posts about

pellets, and I have some questions.

The thing I've heard about pellets is that the minor surgery every 4

months eventually causes scarring. You begin to lose sensation in

skin that has been opened up so much. Eventually you run out of " real

estate " in which to put the pellets.

Have you experienced any of this? My wife suggested the pellets also,

but I think we discounted them for these reasons.

> >

> >

> > Hi folks,

> >

> > I'm new here. It took me a while to read back through all the old

> > archived messages, or I would have introduced myself last week!

> >

> > I've been hypogonadistic (primary) for about 4 years now. I'm 34

> > years old.

> >

> > My doctors have had me on the T patch, T gel, and now T shots IM.

> > The patch was a pain in the ass, the gel was too messy and time

> > consuming. Now I'm taking the shots, and they're much better.

> >

> > When I take them, that is... Last week I was nearly suicidal, and

> > very emotional. I hadn't had my shot in about a month. My poor wife

> > nearly ripped my pants off trying to get me in the bathroom for my

> > injection. I feel a lot better now. Gotta keep up with those, or

> > life stinks.

> >

> > I've learned a lot already just this week after reading the archived

> > messages. I know that my 100mg every 7 days is the way to go. I

> > know that I should be keeping my lab tests, and also telling my doc

> > to test me for Estradiol. He's already agreed to make copies of all

> > my old blood work, so after next week, I'll have some numbers to post.

> >

> > My doc is nice. He freely admits he knows very little about my

> > condition, and that's what makes me stay with him. He doesn't have

> > that doc ego; " I know what's best for you. " Because he admits he

> > doesn't know, he's willing to try many things I suggest. Reading

> > this group looks like it's going to help me suggest the proper things.

> >

> > So, I've rambled enough. I'm damn glad to be here, amongst people

> > who know what I'm going through. I thought I was all alone. I'm

> > also glad to have a gameplan after reading through the old posts. It

> > helps me feel like I'm working towards a goal, instead of just

> > managing by crisis.

[Guest guest]

Hi the pellets that Ernest talks about are a dam good way to good but try and

find a Dr. that will giver you enough pellets to last. I need 20 75 mg. pellets

like Ernest gets and when I find a Dr. that does this they will only giver me up

to 12 75 mg. pellets. This would not last me for 4 months. I checked with

Collage Pharmacy and they said for my size and weght 20 75 mg pellets sounds

about right. So here in Mi. they are trying to charge 2x's as much as Ernest

Dr. and wll only give half as much. If you can find a Dr. that will do it like

Ernest Dr. does it is the best. I tryed it a long time a go and it was nothiing

to it I felt no more pain then a shot. I don't think you can run out of room

for pellets.

Phil

wulfgarrr <the.real.wulfgar@...> wrote:

Hi ernestnolan,

I'm glad you mentioned this, because I saw previous posts about

pellets, and I have some questions.

The thing I've heard about pellets is that the minor surgery every 4

months eventually causes scarring. You begin to lose sensation in

skin that has been opened up so much. Eventually you run out of " real

estate " in which to put the pellets.

Have you experienced any of this? My wife suggested the pellets also,

but I think we discounted them for these reasons.

> >

> >

> > Hi folks,

> >

> > I'm new here. It took me a while to read back through all the old

> > archived messages, or I would have introduced myself last week!

> >

> > I've been hypogonadistic (primary) for about 4 years now. I'm 34

> > years old.

> >

> > My doctors have had me on the T patch, T gel, and now T shots IM.

> > The patch was a pain in the ass, the gel was too messy and time

> > consuming. Now I'm taking the shots, and they're much better.

> >

> > When I take them, that is... Last week I was nearly suicidal, and

> > very emotional. I hadn't had my shot in about a month. My poor wife

> > nearly ripped my pants off trying to get me in the bathroom for my

> > injection. I feel a lot better now. Gotta keep up with those, or

> > life stinks.

> >

> > I've learned a lot already just this week after reading the archived

> > messages. I know that my 100mg every 7 days is the way to go. I

> > know that I should be keeping my lab tests, and also telling my doc

> > to test me for Estradiol. He's already agreed to make copies of all

> > my old blood work, so after next week, I'll have some numbers to post.

> >

> > My doc is nice. He freely admits he knows very little about my

> > condition, and that's what makes me stay with him. He doesn't have

> > that doc ego; " I know what's best for you. " Because he admits he

> > doesn't know, he's willing to try many things I suggest. Reading

> > this group looks like it's going to help me suggest the proper things.

> >

> > So, I've rambled enough. I'm damn glad to be here, amongst people

> > who know what I'm going through. I thought I was all alone. I'm

> > also glad to have a gameplan after reading through the old posts. It

> > helps me feel like I'm working towards a goal, instead of just

> > managing by crisis.

---------------------------------

[Guest guest]

Hi ,

First, welcome to the group. I am also relatively newly diagnosed(may of 2004)

and I too had SO many questions. I have read everything I could get my hands on

and I also joined the Natl Psoriasis Foundation. They have been so helpful.

This may not be the best information but, I can only speak from my own

experience. I exercise 5 days a week. Sometimes I have to use tape on my feet

under my shoes but, I still make myself go. I find that in the end it helps....

I am on Enbrel and I am 85% better. Best medication I have used, and I am

totally accustomed to the shots now. If you can get it, it is very pricey, try

and get it.

If you need to talk feel free to call me, 727-799-1061. I know how hard this

has been for me to deal with. I am 34 and I now feel 134.

take cre

julienne

hmullenpei <hmullen@...> wrote:

Hello,

I am new to the group and new to PA. I have suspected that I have had

this for 6months - and have been dealing with pain for 3 years. I am

26. My right wrist and knuckles are affected - both feet metatarsal

region - and my right ankle. My knees have also started to flare up.

I was officially diagnosed with PA by a rhuematologist on Thursday

(feb. 10) and have just begun treatment with sulfasalazine along with

my daily dose of Bextra.

Needless to say I have alot of questions - I am in contact with my

local arthritis society, and I am a regular at Physio.

I have 2 big concerns:

one is exercise - right now I am too swollen and sore to get through a

working day - let alone anything extra. I want to build up stamina as

I am planning on traveling this April. (I do have a dr' appt. before I

leave where she may do some joint injections)

two is starting a family - that is why I am on the sulfasalazine, most

of my friends have young children and I am more tired then they are!

How do you go about daily tasks like changing diapers and dressing

children when you cannot use your hand?

thanks for listening,

[Guest guest]

Hi ,

How are you? I hope your a bit better today and that the sulfasalize kicks

in soon....

Ive had PA since I was 24 and am now 31 and I had heaps of questions when i

was first diagnosed... especialy in the childbearing dept.

I still dont have children but we plan to try again after we get married in

August this year... Im lucky in that my partner has been soooo supportive

throughout the years! Im a very lucky girl... he is understanding and

realises that it may be hard for us to have a family and if it happens it

happens...

I am on MTX (methotrexate) at the moment and need to be off that for minimum

of 3 months before connsidering conceiving... I also take NSAID (piroxicam)

it might be called something else in the US, I am in Australia... I stopped

taking celebrex a few weeks ago and this does the trick.. If I might say so

myself, I feel pretty damn good!!!!

Anyway, dont worry about being able to handle small children...the disease

has a tendency to fluctuate a lot...you may even find that your symptons

improve when your pregnant... PA shifts from joint to joint as well... Ive

had it all ove rthe place over the years - my whole body has been affected

at one stage or anotehr but right now its just my wrists and one finger and

one elbow...

Please, try to be as positive as you can....I know its hard at first... I

got very depressed years ago when I first got it as it limited my life so

much and I couldnt teach anymore and I was sooo tired all the time and

sore...and I had to stop playing netball and sport in general.... then with

time, I learnt to cope and learnt to do things in new ways...

My advice is to stay as positive as you can be as if you let it get on top

of you its not gonna help! Oh ,, and listen to your doctor of course....

They will get to know your symptons as time goes on and adjust your

medications accordingly...Ive had the same rhuemy for 5 years as it took me

2 years to get diagnosed....and hes been great to deal with particularly

when I started the MTX...( i had been on sulfasalazine for 12 months, and it

didnt work for me). I didnt want to go on the MTX as I wanted to have kids

and I was worried about the side effects ... lucky for me I havent had any

and my liver tests etc have been great... I exercise everyday and find that

it really helps but I wont do a long walk if my achilles are flared up... I

find its better to wait til they settle down a bit....

Hydrotherapy or swimming in general works well...As its summer here Ive been

swimming in our pool everyday and using the foam noodles to do resistance

exercises to strengthen my arm muscles... Its gonna be 38C today so another

swim today for sure!!

I hope your doing much better today ... Give it time and keep your

chin up!

Cheers

Perth, Western Australia