Another New Member

Posted February 4, 2002 · February 4, 2002

In a message dated 02/03/2002 7:56:56 PM Eastern Standard Time,

markbeq@... writes:

> Many of you are on MTX

> but I just have too many concerns about the long-term side effects

Mark - there are other options and in my opinion we all need to be on

something to protect our joints which NSAIDS and prednisone just don't do.

There is enbrel, remicade, arava, antibiodic therapy, etc. Check out the

archives.

Hope you are well,

Posted February 4, 2002 · February 4, 2002

markbeq wrote:

>

> Hi to all. My name is Mark and I'm a 52 year old father of 4 and

> like all new members I am so happy to find a site

> where people will know about and understand the problems I have dealt

> with for over 20 years. Unlike most, my PA started before P back in

> 1981. I noticed my right thumb was very tender and swollen. I just

> passed it off as some type of injury that would get better with time.

Sounds _so_ familiar. Well you've found the right bunch :-). Welcome,

and hope you continue to do well (ideally, even better!).

--Louise

Posted March 2, 2002 · March 2, 2002

Hi Mark,

My name is Bill. I am a 58 year old man who was diagnosed with PA in 1994,

after

getting P in 1993. I suggest that you try to get a bone density test because

you may be liable to get osteoporosis due to taking many years of prednisone,

which has

a tendency to pull calcium out of your bones or it may affect your

parathyroid glands

in your neck. I am telling you about this because the same problems happened

to me. On New Year' s Day 2001, I found that I had osteoporosis because of an

ER ray

of my wrist. Then, in February 2001 I had surgery on my parathyroid glands

for the

second time since 1998. Furthermore, during the summer of 1998, due to PA, I

had

both double hip and double knee replacement surgeries. Now, I can walk within

my

home without aid and drive my car. However, I use a walker when traveling

outside.

Nevertheless, best wishes to you and your family.

Sincerely,

Bill in Washington, DC

Posted August 22, 2004 · August 22, 2004

Welcome Anat, what country are you from?

Did the probacteria work for the constipation? If you

have trouble, write to the group and we will help you.

P

--- iddoanat <iddobenzvi@...> wrote:

> Hello everyone,

>

> I am a mother of 4 years old child with PDD NOS. We

> are doing DIR

> for a year. We started a month ago probacteria

> because of

> conctepations. We saw alot of improvements witnt the

> bacteria and so

> thought about enzyme (we are off casein but not

> glutean). I order

> enzymes - peptizyme which just arrived and I got an

> invitation to

> join...

>

> So now what? how do we start?

> What to expect?

>

> thnak you,

>

> Anat

>

Posted April 24, 2005 · April 24, 2005

[ ] Another new member

Hi Joyce

Welcome to the group.

Hi everyone,My name is Joyce and I just found out on Thursday that I have HCV. I have been doing a lot of reading on these groups and I haven't seen anyone mention a problem with itching. I went to the Dermatologist for severe itching back at the end of Dec and she found something weird with my liver. They did a Hep B and C scan and still the levels were off, so they sent me to the University and had extensive blood testing done. Got the news by phone Thursday that my viral load is 450,000 which confirms that I have the infection at what is considered to be a small amount of virus. My AST is 45. ALT is normal at 33. All other levels are normal. I have Genotype 1, which she says the the most common, but the hardest to treat. She wants to do the biopsy to see how much , if any, scar tissue I have in my liver. I have had no symtoms accept for the itching and I have noticed I need more sleep, but I have not felt physically exhausted. I have learned a lot by reading on this group, and you all seem to be wonderful people! I wish we could have met on better terms but, here we are! i had a small emotional breakdown when I had to share this frightening news with my poor DH when he got home from work Thursday, but I got a grip on myself and called my sister that lives closest to me and my Pastor. They came and my Pastor spent 3 hours with us. Now, I have never been one to handle stress very well. I was a constant worrier and about drove myself nuts trying to fix everyone problems. I am a "caretaker" as my father was and is an alcoholic. Over the last 6 months I have become very active in a new church, and decided to lay all the "crap" in my life at the Lord's feet and let him guide me through. I didn't have any idea we would be dealing with such a heavy load.I think the heaviest thing on my heart and mind right now is telling my two daughters. My oldest daughter just made me a Grandma for the first time the day I went to the University for the big blood testing. Her dad has a seizure disorder, (which is finally being controlled by the correct meds), and she worries about him all the time. now she is a new Mommy and I have to lay this load on her as well. My youngest daughter lives in SC with her fiance' and we are so much alike and not gotten along the best over the years, and we have finally gotten to the point where we can be friends and now I have to laod this on her as well! I want to be armed when as much knowledge as possible when I tell them, and hopefully it will help lighten the blow. I keep thinking I would much rather be going through this than one of them. I babysit for a living and I have to tell the parents, again, once I can go armed with info. The biggest thing with that, is I take care of a little girl that I have had since she was 6 weeks old. My DH and I have actually raised her. She has been in our home approx 85% of her life. She is part of my family and I would not survive losing her from our lives.Saying all that to ask these questions:1) What are the ways of contracting HCV?2) How can I protect anyone that I am around on a regular basis, ie small children. This is my biggest question of interest.3) Is 450,000 considered a low viral load? At what point will the Dr want to start treatment?4) Has anyone tried or known anyone to have tried Mesosilver? I read about it on one of the HEP C websites I found. If you have never heard of it, do a search and tell me what you think. What about Market America. Any thoughts on what, if anything, OPC might do for HCV?OK, enough questions for now. I know you all get tired of all the questions, but thank GOD you all hang in and share your experiences with us newbies!In advance, pardon the typos, it's too long to go back and proof read this late at night. I look forward to reading your responses and know I will learn a lot!GOD SPEED,Joyce

Posted April 24, 2005 · April 24, 2005

>

> [ ] Another new member

> Hi Joyce

> Welcome to the group.

>

> Hi everyone,

> My name is Joyce and I just found out on Thursday that I have

HCV.

> I have been doing a lot of reading on these groups and I

haven't

> seen anyone mention a problem with itching. I went to the

> Dermatologist for severe itching back at the end of Dec and

she

> found something weird with my liver. They did a Hep B and C

scan

> and still the levels were off, so they sent me to the

University and

> had extensive blood testing done. Got the news by phone

Thursday

> that my viral load is 450,000 which confirms that I have the

> infection at what is considered to be a small amount of

virus. My

> AST is 45. ALT is normal at 33. All other levels are normal. I

have

> Genotype 1, which she says the the most common, but the

hardest to

> treat. She wants to do the biopsy to see how much , if any,

scar

> tissue I have in my liver. I have had no symtoms accept for

the

> itching and I have noticed I need more sleep, but I have not

felt

> physically exhausted.

>

> I have learned a lot by reading on this group, and you all

seem to

> be wonderful people! I wish we could have met on better terms

but,

> here we are! i had a small emotional breakdown when I had to

share

> this frightening news with my poor DH when he got home from

work

> Thursday, but I got a grip on myself and called my sister that

lives

> closest to me and my Pastor. They came and my Pastor spent 3

hours

> with us. Now, I have never been one to handle stress very

well. I

> was a constant worrier and about drove myself nuts trying to

fix

> everyone problems. I am a " caretaker " as my father was and is

an

> alcoholic. Over the last 6 months I have become very active in

a new

> church, and decided to lay all the " crap " in my life at the

Lord's

> feet and let him guide me through. I didn't have any idea we

would

> be dealing with such a heavy load.

>

> I think the heaviest thing on my heart and mind right now is

telling

> my two daughters. My oldest daughter just made me a Grandma

for the

> first time the day I went to the University for the big blood

> testing. Her dad has a seizure disorder, (which is finally

being

> controlled by the correct meds), and she worries about him all

the

> time. now she is a new Mommy and I have to lay this load on

her as

> well. My youngest daughter lives in SC with her fiance' and

we are

> so much alike and not gotten along the best over the years,

and we

> have finally gotten to the point where we can be friends and

now I

> have to laod this on her as well! I want to be armed when as

much

> knowledge as possible when I tell them, and hopefully it will

help

> lighten the blow. I keep thinking I would much rather be going

> through this than one of them.

> I babysit for a living and I have to tell the parents, again,

once I

> can go armed with info. The biggest thing with that, is I

take care

> of a little girl that I have had since she was 6 weeks old.

My DH

> and I have actually raised her. She has been in our home

approx 85%

> of her life. She is part of my family and I would not survive

losing

> her from our lives.

>

> Saying all that to ask these questions:

>

> 1) What are the ways of contracting HCV?

>

> 2) How can I protect anyone that I am around on a regular

basis, ie

> small children. This is my biggest question of interest.

>

> 3) Is 450,000 considered a low viral load? At what point will

the Dr

> want to start treatment?

>

> 4) Has anyone tried or known anyone to have tried Mesosilver?

I

> read about it on one of the HEP C websites I found. If you

have

> never heard of it, do a search and tell me what you think.

What

> about Market America. Any thoughts on what, if anything, OPC

might

> do for HCV?

>

> OK, enough questions for now. I know you all get tired of all

the

> questions, but thank GOD you all hang in and share your

experiences

> with us newbies!

>

> In advance, pardon the typos, it's too long to go back and

proof

> read this late at night. I look forward to reading your

responses

> and know I will learn a lot!

>

> GOD SPEED,

> Joyce

>

> Welcome to the group I found out last nov I had hcv am doing

treatment. On my 10th week now Going ok so far few sides but doing

fine. My viral load was 7 million Annita

>

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

---------

>

Posted April 25, 2005 · April 25, 2005

Hi Joyce...sorry to hear of your diagnosis...I too had a mini-melt down when I found

out! I have had it for over twenty years, and it also took a dermatologist to figure

it out..I went to her for a hair loss problem.

To compound my sadness over all of this, my youngest son who is seven now,,

also has it. I have a 13 year old son who tested negative and a 20 year old son,

who has not been tested as of yet because he does not have insurance.

When I had to tell my ex he was really angry...he didnt understand at the time how

it came to be..and once he found out about our son, he treated me as if I had killed

him basically, so it has been pretty rough for us

That was a year ago, and since then, we have both learned a lot.

We too have the same genotype 1 and my viral load was over a million.

My doctor told me at the time, that any load over 100.000 pml is considered

a starting point for treatment, so you certainly are there, and that the

itching is a result of too much bile, which will come and go.

I had a biopsy and an ultrasound, both turned out good..so I have decided to

weigh out the pros and cons of treatment before I jump into anything.

I don't smoke or drink, or otherwise abuse myself...so I'm in pretty good

shape, and think I can afford to wait on treatment.

I contracted it thru a transfusion when I had my appendix removed at 13.

So far, all that I have read...leads me away from treatment at this point.

I try to keep up on the latest developments however, for my son.

I certainly don't want him to face a future bridled by illness.

I understand that this infection does not kill us quickly, and that

probably is why research is so slow..not to mention the fact,

that the monetary potential for a "treatment" versus a cure is much

greater...so I imagine it will be very slow in coming, probably too

slow for me to benefit.

Even though it doesnt kill us quick, it MUST have a profound effect

on just about every system in our bodies...when you consider

where this virus resides within us...so we will be faced with a multitude

a "little things" that will affect us negatively and take away from our

quality of life...this is what makes ME angry..and is at one point the

feeling that drove me to consider treatment very seriously.

However, upon investigation there are many potential side effects of

the treatment that can be lasting and in my opinion just as potentially

troublesome as what I deal with now..so what do you do?

Ultimately the decision will be yours..all I can recommend is that

from this point you pay close attention to what you put into your

body in order to stay as healthy as you can, and just do some

reading on your own, and understand that you can't believe everything

you read on the internet!

I have gone to library and checked out books on viruses in general, and

how they cause illness etc..and have learned more there.

Unfortunately this disease has not been recognized or studied for

much more than 15 years and that leaves little material to look at.

That in itself can make you feel very discouraged...I know, I was stuck

there for a time...then I just got really super mad! Why did it take

so long for someone to pick up on it? And that anger helped to drive me

to do something to make a difference..currently I am trying to work on

how we can get this to be part of a regular "prenatal" screening,

They test you for everything else under the sun, when you are

pregnant...why not this? certainly it can't be anymore expensive than an

HIV test, and I know they have tested for that for quite some time.

Even fifteen years ago...if I had been tested..I would have known enough

to at least not have anymore children!

I know they test for it when you give blood...but, honestly...I dont know a

single a person that gives blood!

It really doesnt matter how any of us contracted it...we have it. But I feel

like it puts me in a position to make sure that there is adequate education

for those who will come after me. I for one had NO clue it even existed until

a year ago...how is that possible? I don't live in a bubble!

I can only assume that the dialogue just isnt there.

Take some time and learn all that you can..I think it's important to tell those

around you who "need" to know..what you are dealing with, but it's also

very important not to paint a bleak picture...that will be important to you

as well...I know when I first found out, I was so down about it..I was shocked,

I was angry, I was disgusted with my doctors for not figuring it out sooner,

and that in itself made me sick! I spent six weeks crying and almost

completely useless..and that made everyone around me feel worse.

Be aware of it...keep a healthy respect for what it means to be infected,

but don't give it any more power over you than it already has!

be good to yourself....and best of luck!

April.

Posted April 25, 2005 · April 25, 2005

Hi Joyce, wecome to the group. I'm sorry you had to come in contact with this. But try not to worry to much over your Hep C. Treetment has worked on Geno type 1, just not as well as 2 & 3. Treetment can be rough. But a lot of us found it liveable. Their's some that the sides were to rough. It affects us all differantly.

Hep C is transmitted through the blood. Blood transfusion's IV drug use & tattooes are the most comman. Sharing a razor or toooth brush can also pass it.

They say intercourse can. But as far as I know everyone in her, spouse was tested & tested clear.

I hope this helps. Terryjkeith03 <jkeith03@...> wrote:

Hi everyone,My name is Joyce and I just found out on Thursday that I have HCV. I have been doing a lot of reading on these groups and I haven't seen anyone mention a problem with itching. I went to the Dermatologist for severe itching back at the end of Dec and she found something weird with my liver. They did a Hep B and C scan and still the levels were off, so they sent me to the University and had extensive blood testing done. Got the news by phone Thursday that my viral load is 450,000 which confirms that I have the infection at what is considered to be a small amount of virus. My AST is 45. ALT is normal at 33. All other levels are normal. I have Genotype 1, which she says the the most common, but the hardest to treat. She wants to do the biopsy to see how much , if any, scar tissue I have

in my liver. I have had no symtoms accept for the itching and I have noticed I need more sleep, but I have not felt physically exhausted. I have learned a lot by reading on this group, and you all seem to be wonderful people! I wish we could have met on better terms but, here we are! i had a small emotional breakdown when I had to share this frightening news with my poor DH when he got home from work Thursday, but I got a grip on myself and called my sister that lives closest to me and my Pastor. They came and my Pastor spent 3 hours with us. Now, I have never been one to handle stress very well. I was a constant worrier and about drove myself nuts trying to fix everyone problems. I am a "caretaker" as my father was and is an alcoholic. Over the last 6 months I have become very active in a new church, and decided to lay all the "crap" in my life at the Lord's feet and let him guide me through.

I didn't have any idea we would be dealing with such a heavy load.I think the heaviest thing on my heart and mind right now is telling my two daughters. My oldest daughter just made me a Grandma for the first time the day I went to the University for the big blood testing. Her dad has a seizure disorder, (which is finally being controlled by the correct meds), and she worries about him all the time. now she is a new Mommy and I have to lay this load on her as well. My youngest daughter lives in SC with her fiance' and we are so much alike and not gotten along the best over the years, and we have finally gotten to the point where we can be friends and now I have to laod this on her as well! I want to be armed when as much knowledge as possible when I tell them, and hopefully it will help lighten the blow. I keep thinking I would much rather be going through this than one of them. I babysit for a living

and I have to tell the parents, again, once I can go armed with info. The biggest thing with that, is I take care of a little girl that I have had since she was 6 weeks old. My DH and I have actually raised her. She has been in our home approx 85% of her life. She is part of my family and I would not survive losing her from our lives.Saying all that to ask these questions:1) What are the ways of contracting HCV?2) How can I protect anyone that I am around on a regular basis, ie small children. This is my biggest question of interest.3) Is 450,000 considered a low viral load? At what point will the Dr want to start treatment?4) Has anyone tried or known anyone to have tried Mesosilver? I read about it on one of the HEP C websites I found. If you have never heard of it, do a search and tell me what you think. What about Market America. Any thoughts on what, if anything,

OPC might do for HCV?OK, enough questions for now. I know you all get tired of all the questions, but thank GOD you all hang in and share your experiences with us newbies!In advance, pardon the typos, it's too long to go back and proof read this late at night. I look forward to reading your responses and know I will learn a lot!GOD SPEED,Joyce__________________________________________________

Posted February 15, 2007 · February 15, 2007

Alison, except for being older than you (54) my story is almost

identical. I didn't have the P originally, nor did I get the

diagnosis until the " big one " hit, but I also had it first in my

knee, then remission, then in my fingers, remission, then a major

flare affecting almost everything plus starting with the skin. I

take MTX which was like a miracle until I had to back down on the

dose due to high liver panel. Now I've added Humira to the MTX and

NSAIDs. I took my 3rd injection today. So far I don't notice any

difference in either direction in my joint pain. My skin is, if

anything, worse! I won't blame it on the Humira since it was headed

in the wrong direction before I started the Humira, but I was hoping

the Humira would turn it around quickly. I know it sometimes take 2-

3 months for a drug to begin to help, so I'm trying to be patient.

The good news is that the Humira injections are not bad at all. I

ice the area for 3 minutes before beginning. I didn't feel anything

at all when I did it in the belly, although I got a huge bruise the

first time. Today was the first time in the thigh - I did feel a

slight burning there which I didn't have with the belly. A quarter-

sized bruise. But all-in-all, it's no big deal to do the pen

injections. Big relief for me - I was a little worried. I've had no

untoward side effects from the Humira.

As for work, I was self-employed as a computer consultant, tech

writer, and radio host before this hit last spring. I have closed my

business. My fingers are too big a mess for using the keyboard all

day, I can't stand up for more than about 15 minutes which makes it

impossible to do training seminars I once did, and I used to drive

30,000 miles a year for my business which I certainly can't do now.

I'm considering applying for SSDI.

For sharing how this disease affects you, try using the " spoon

theory " which is found on the " You Don't Look Sick " website. It's

helped my family 'get it.'

regards,

sherry z

>

> i live in nc and am 37. i was diagnosed with Ps more than 15 years

> ago and PsA more than 10. my initial outbreak with PsA only

affected

> a few of my fingers and we were able to get that under control with

> NSAIDS... pretty soon, i quit taking the Rx and started taking over

> the counter and then was able to ween myself off of that as well..

i

> hated taking pills! then a few years later, i had an outbreak in

one

> of my toes and that was horrible... again, i got that under control

> with NSAIDS and went on about my business... the PsA was dormant

for

> probably about 10 years and then a year ago, i hit a brick wall...

> hands, wrists, toes, feet, ankles, knees, back... and full body

> fatigue... i have run through most of the NSAIDS, been on celebrex,

> have taken MTX for about 6 months and it was helping alot! i could

> walk without pain... it felt great! but a month or so ago, it

> started reversing... so i'm starting Humira tomorrow in hopes that

it

> is the miracle drug i've heard it to be. i would like to know what

> anyone else's experience is with Humira. i would also like to know

> how other folks deal with work on the days when the pain is

literally

> debilitating... i have missed so much work and don't feel like

anyone

> at work understands exactly how serious my condition is... and i

dont

> know how to express it to them.. any suggestions?

> thanks!

> alison

>

Posted February 16, 2007 · February 16, 2007

and Humira

I was put on Humira at my second visit to rheumy. (I

was in the midst of a HUGE flare!) Insurance approval

for me was a piece of cake. Since I am an insulin

dependent diabetic, I opted for traditional Humira

syringes (that's what I use every day, for pete's

sake!) instead of the auto-inject device.

For me, humira is a miracle drug. I had no injection

reactions or problems and I felt the positive effects

IMMEDIATELY. Like within three hours! (no, it wasn't

a placebo effect) I was back to a more normal energy

level within two days of the injection. The

elimination of brain fog is worth the injections for

me. The pain in my joints has not disappeared, but it

IS at a manageable level. I notice that at day 10

after an injection the aches are worse and the fog is

begining to roll back in.

What do we do when we can't work? In my case, I thank

the Lord that I have the best workplace imaginable! I

work in the software industry and we are allowed to

work from home if it is appropriate. On the few days

I have whimped out of going in to work, I fire up my

computer and work for a few hours. Then I take a nap.

Then I work some more. Management is understanding

and I have taken the time to educate my co-workers and

boss'es. (I sent them to the spoon theory page)

I know that this might not be possible for everyone

and many workplaces are not comfortable with this kind

of arrangement. And I AM properly grateful that I am

blessed with both a good Dr and a good workplace.

CMPete

Quilts With Poodle

'.....now times are rough and I've got too much STUFF!!'

J.D. Buffett

I have a blog now!! And there is ACTUALLY stuff on it!

http://cmpetequiltspoodle.blogspot.com/

________________________________________________________________________________\

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Posted July 16, 2008 · July 16, 2008

Hi all-

I am new to the group and have caught up on all the documentation

provided as well as read the old postings.

ael was diagnosed with Plagio and Tort by a PT at Children's

Hospital of Orange County (CHOC). We had an appointment with the

neurosurgeon and he seemed to think both cases were mild. He said

Nates ears were only off 1/2 inch and he would round out at 2-3 years

old. The tort was so mild that not only did he not need PT, we could

STOP the PT at home. I kept pressing and all he said was if it

would 'make me feel better " I could get one. We have an appointment

with Cranial Tech next Tuesday. In the meantime, did anyone have a

conversation in inches? Everyone talks in mm. Is just eyeballing a

head and saying at 1 inch he is usually concerned a common conversation?

Any help would be great-

Stacey

Mom to Nate and Madi (6 mo)

Posted July 16, 2008 · July 16, 2008

1 inch is the equivalent to 25 mm which is a pretty severe difference. 1/2

inch would be 12.7 mm. Depending upon what that is measuring it could be a

moderate difference. Most of the time when people refer to how severe their

child's plagio is they are talking about the difference in the diagonals of

the head (look at the top of your child's head and picture an X on the top

and measure the two lines). 0-3 mm is normal; <6 mm is very mild; 6-10 mm

is mild; 10-15 mm is moderate; 15+ mm is severe. When you go to CT they

usually give you three measurements in mm form: Cranial Vault Asymmetry,

Skull Base Asymmetry and Mid-face Asymmetry. Let us know how your

appointment with CT goes.

Molly

Novato, California

Nicolas, 2.5, tort & plagio, STARband (CIRS Oakland) 4/24/06-9/12/06,

Graduate!

, 5

, 8.5