Re: questions from a new member

[Guest guest]

I was recently diagnosed in April with PA and since June have been

taking MTX, sulfasalazine, and plaquinel. I was told last month that

these medications may not be doing enough to help me and he is

considering Remicade. Can anyone tell me if they have been on Remicade

and what it has done for them? I am hoping that the extreme pain,

swelling, feeling sick, and fatigue will be better. Will it or is this

what I have to look forward to the rest of my life?

I would appreciate any information and help from any who can help me

understand this disease. I have been unable to find anyone else in my

area with this disease. Also, anyone else ever feel very depressed

about this and what have you done to feel better. Sometimes I think my

husband thinks I'm crazy. He really is doing well handling it, much

better than me.

Thanks so much! Anne

[Guest guest]

Hi Anne,

I have been on Remicade " only " for over 3 months now; total about 6

months. Was using Remicade and MTX, but the MTX caused esophogus

problems for me. I have major back and peripheral joint problems

and the Remicade has worked better than anything else we've tried.

It has really helped the fatigue as well. The only sickness I've

ever encountered was due to the MTX causing my acid reflux to go

crazy.

You don't say how long you've had symptoms. Have you tried Humira

or Enbrel? Humira worked well for me in all areas except my back

and many of the other members here use Enbrel.

I've been battling this illness for many years. I have good days

where I can work in my garden, etc.. and then I have days where I

come home from work and pretty much do nothing except apply ice and

heat. Once you get it under control the good days become more

frequent and you learn how to deal with the bad days.

The most difficult area for me has been learning accept my

limitations and asking for help if I need it. (I pray alot too!)

My family has been great - it was just hard for me to admit that I

couldn't do the things I used to do.

You don't mention where you live; I'm in north Texas.

Treat yourself kindly.

n

>

> I was recently diagnosed in April with PA and since June have been

> taking MTX, sulfasalazine, and plaquinel. I was told last month

that

> these medications may not be doing enough to help me and he is

> considering Remicade. Can anyone tell me if they have been on

Remicade

> and what it has done for them? I am hoping that the extreme pain,

> swelling, feeling sick, and fatigue will be better. Will it or is

this

> what I have to look forward to the rest of my life?

> I would appreciate any information and help from any who can help

me

> understand this disease. I have been unable to find anyone else

in my

> area with this disease. Also, anyone else ever feel very

depressed

> about this and what have you done to feel better. Sometimes I

think my

> husband thinks I'm crazy. He really is doing well handling it,

much

> better than me.

> Thanks so much! Anne

>

[Guest guest]

Hi Anne

Many of us have had the same questions. The older arthritis

medications like you have been taking often do not work as well as the

newer " biologic " agents like Remicade. I don't take Remicade, but I

have been taking Enbrel for 6 months now. For some people it induces

complete or near remission, for others - like me - it removes the

worst of the discomfort and helps minimize future joint damage.

Unfortunately this disease is a chronic ailment, not unlike managing

diabetes or high blood pressure. So a short term treatment that

" cures " the disease is unlikely. With treatment however you should be

in a lot better shape.

A year ago I was at my wits end just like you. I'm not perfect, but

now life definitely is enjoyable again most days!

Best regards -

>

> I was recently diagnosed in April with PA and since June have been

> taking MTX, sulfasalazine, and plaquinel. I was told last month that

> these medications may not be doing enough to help me and he is

> considering Remicade. Can anyone tell me if they have been on Remicade

> and what it has done for them? I am hoping that the extreme pain,

> swelling, feeling sick, and fatigue will be better. Will it or is this

> what I have to look forward to the rest of my life?

> I would appreciate any information and help from any who can help me

> understand this disease. I have been unable to find anyone else in my

> area with this disease. Also, anyone else ever feel very depressed

> about this and what have you done to feel better. Sometimes I think my

> husband thinks I'm crazy. He really is doing well handling it, much

> better than me.

> Thanks so much! Anne

>

[Guest guest]

It really depends on how long you have actually been living with the

pain, since all you mentioned was the diagnosis date many people go

for years with pain before doctors find out what is causing it. If

you are in the early stages, let me offer you some hope and tell you

that you do get mentally stronger and the pain does get easier to

handle.

It is difficult being married to someone in perfect health, you

think the only way they could understand is if they fell down a

flight of stairs or got hit by a semi-truck, but no one can

understand your pain like people who are going through it. That is

why it is nice to have a support group. If you are having a really

hard time with depression please talk to your doctor about it, it is

SOOOO common with people in chronic pain. You don't have to handle

it by yourself. There are medications that can help you through the

rough spots.

This disease is different for everyone. Some people get it really

aggressive in the beginning while others take it more slowly, while

still others see long remission periods. Can you give me some more

information on your particular experience?

Thanks Hannah

>

> I was recently diagnosed in April with PA and since June have been

> taking MTX, sulfasalazine, and plaquinel. I was told last month

that

> these medications may not be doing enough to help me and he is

> considering Remicade. Can anyone tell me if they have been on

Remicade

> and what it has done for them? I am hoping that the extreme pain,

> swelling, feeling sick, and fatigue will be better. Will it or is

this

> what I have to look forward to the rest of my life?

> I would appreciate any information and help from any who can help

me

> understand this disease. I have been unable to find anyone else

in my

> area with this disease. Also, anyone else ever feel very

depressed

> about this and what have you done to feel better. Sometimes I

think my

> husband thinks I'm crazy. He really is doing well handling it,

much

> better than me.

> Thanks so much! Anne

>

[Guest guest]

> It is difficult being married to someone in perfect health, you

> think the only way they could understand is if they fell down a

> flight of stairs or got hit by a semi-truck, but no one can

> understand your pain like people who are going through it. That is

> why it is nice to have a support group.

I've had arthritis since age 10, so my husband obviously knew about the

disease already, but it's also tough because he is a an adventure

racer / triathlete. Very active! He's currently in the best shape of

his life at 35, and I am at my lowest point (fattest, in poorest

health). I'm having a harder time with it than he is.

-Marietta

[Guest guest]

He's currently in the best shape of

> his life at 35, and I am at my lowest point (fattest, in poorest

> health). I'm having a harder time with it than he is.

> -Marietta

>

Marietta,

I hear you and have been there as well. Stop beating yourself up. I

could not move either and the weight just creeps up. No excercise

would be good for me because everything causes pain. Then I found

water aerobics and it is amazing. Many ymca's offer it. THe water is

up to the shoulders and takes all impact off your body. I lost weight

doing it. Where do you live. maybe you can look into it in your area.

Janet

[Editor's Note: Amen to that, Janet. There is nothing like swimming, aquatics,

deep water running, etc. It helps keep our joints limber, it helps keep weight

off and it tones other parts of the body so that we can shift some of the load

from the places that hurt...and it does all this in a pain-free environment.

Kathy F.]

[Guest guest]

Thanks Ladies!

I am currently doing aquatic PT to build my strength back up, with the

ultimate goal being aqua aeorobics... I used to do them, but with my

slide into health hell 3 yrs ago, it all fell apart. I expect after a

few months of PT in the water, my muscles will be strong enough to keep

everything in alignment, which should help a lot!! I also have to

start walking my dog again... that's a huge motivator, and he has

arthritis too!

-Marietta

> I hear you and have been there as well. Stop beating yourself up. I

> could not move either and the weight just creeps up. No excercise

> would be good for me because everything causes pain. Then I found

> water aerobics and it is amazing. Many ymca's offer it. THe water is

> up to the shoulders and takes all impact off your body. I lost weight

> doing it. Where do you live. maybe you can look into it in your area.

> Janet

>

> [Editor's Note: Amen to that, Janet. There is nothing like

swimming, aquatics, deep water running, etc. It helps keep our joints

limber, it helps keep weight off and it tones other parts of the body

so that we can shift some of the load from the places that hurt...and

it does all this in a pain-free environment. Kathy F.]

>

[Guest guest]

Anne....I'm sorry I took so long to respond to you. I'm a bit

behind. To answer your question " is this what I have to look forward

to " ....hopefully not. There are other medications you can try as you

know and there are more on the horizon...more being developed. The

right medication for you can work wonders. Hang in there and don't give

up. It can get better. -Betz

[Guest guest]

My son had some flatness on one side of his forehead also. The

orthotist also told us that the forehead is one of the hardest spots

to correct. He was in a Hanger helmet for about two months and had

wonderful correction of his plagio. When we went in for his final

appointment, the back of his head was pretty much perfect, but the

forehead still had some (minimal) flatness on the side. The

orthotist told us that if we wanted to continue treatment we could,

but it was up to us. We decided not to continue with the helmet

because we were happy and satisfied with how much his head shape had

improved overall (including some forehead rounding). We were

initially told that he would wear his helmet for about three months,

but it ended up being just less than two months. We had some really

good growth spurts while he was wearing it!

I see your login is " mountaingirlwestvirginia " , are you in WV? If so

are you going to Hanger in Fairmont or town? (the

orthotist there) is great to work with and is always available for

you. If that is where you are going, you can ask to see

Dillon's before and after scans to see the improvement we had.

Best of luck with your daughter and her helmet.

-Noel

mom to Dillon (Hanger helmet July - August 2008)

>

> My daughter was born with plagiocephaly.She is now six months

old and

> will recieve her helmet Octobor 28 or 31. Her head is very flat

above

> her left eye. Her orthotist said its is hard to correct the

forehead. I

> was wondering if the helmet will fix this completely and how long

does

> it normally take.

>

[Guest guest]

Thank you for your reply. My daughter, Ava is seeing in Fairmont. We live about 20 miles south of Buckhannon.So it is alot closer than town. Anyways said that she would have to wear the helmet around 4 to 6 months. This seems like a long time to me. I just hope it works.

Thanks again,

Tina

From: noelcwiseman <noelcwiseman@...>Plagiocephaly Sent: Tuesday, October 21, 2008 3:01:30 PMSubject: Re: questions from a new member

My son had some flatness on one side of his forehead also. The orthotist also told us that the forehead is one of the hardest spots to correct. He was in a Hanger helmet for about two months and had wonderful correction of his plagio. When we went in for his final appointment, the back of his head was pretty much perfect, but the forehead still had some (minimal) flatness on the side. The orthotist told us that if we wanted to continue treatment we could, but it was up to us. We decided not to continue with the helmet because we were happy and satisfied with how much his head shape had improved overall (including some forehead rounding). We were initially told that he would wear his helmet for about three months, but it ended up being just less than two months. We had some really good growth spurts while he was wearing it!I see your login is "mountaingirlwestvi rginia", are you in WV? If so

are you going to Hanger in Fairmont or town? (the orthotist there) is great to work with and is always available for you. If that is where you are going, you can ask to see Dillon's before and after scans to see the improvement we had. Best of luck with your daughter and her helmet. -Noel mom to Dillon (Hanger helmet July - August 2008) >> My daughter was born with plagiocephaly. She is now six months old and > will recieve her helmet Octobor 28 or 31. Her head is very flat above > her left eye. Her orthotist said its is hard to correct the forehead. I > was wondering if the helmet will fix this completely

and how long does > it normally take.>__________________________________________________

[Guest guest]

Noel,

Wow your son only had his band for less than two months? That is awesome- if

you don't mind me asking at what age did he start? We are only in 2 weeks of the

banding process but I am already looking forward to getting it off!!

Thanks,

Mom to McKenna 6 months

> From: noelcwiseman <noelcwiseman@...>

> Subject: Re: questions from a new member

> Plagiocephaly

> Date: Tuesday, October 21, 2008, 7:01 PM

> My son had some flatness on one side of his forehead also.

> The

> orthotist also told us that the forehead is one of the

> hardest spots

> to correct. He was in a Hanger helmet for about two months

> and had

> wonderful correction of his plagio. When we went in for his

> final

> appointment, the back of his head was pretty much perfect,

> but the

> forehead still had some (minimal) flatness on the side. The

>

> orthotist told us that if we wanted to continue treatment

> we could,

> but it was up to us. We decided not to continue with the

> helmet

> because we were happy and satisfied with how much his head

> shape had

> improved overall (including some forehead rounding). We

> were

> initially told that he would wear his helmet for about

> three months,

> but it ended up being just less than two months. We had

> some really

> good growth spurts while he was wearing it!

>

> I see your login is " mountaingirlwestvirginia " ,

> are you in WV? If so

> are you going to Hanger in Fairmont or town?

> (the

> orthotist there) is great to work with and is always

> available for

> you. If that is where you are going, you can ask to

> see

> Dillon's before and after scans to see the improvement

> we had.

>

> Best of luck with your daughter and her helmet.

>

> -Noel

> mom to Dillon (Hanger helmet July - August 2008)

>

>

> >

> > My daughter was born with plagiocephaly.She is now

> six months

> old and

> > will recieve her helmet Octobor 28 or 31. Her head is

> very flat

> above

> > her left eye. Her orthotist said its is hard to

> correct the

> forehead. I

> > was wondering if the helmet will fix this completely

> and how long

> does

> > it normally take.

> >

__________________________________________________

[Guest guest]

Time in the helmet varies quite a bit depending on how severe the

palgio is and how fast your baby grows. It might take a little longer,

bu the forehead usually corrects too. Let us know how your baby does

in her band.

-christine

sydney 2.5 yrs starband grad

>

> My daughter was born with plagiocephaly.She is now six months old and

> will recieve her helmet Octobor 28 or 31. Her head is very flat above

> her left eye. Her orthotist said its is hard to correct the forehead. I

> was wondering if the helmet will fix this completely and how long does

> it normally take.

>