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Hi Jill-

welcome to the group-so glad you found us and I know you will Be too. There is a lot of support friendship and guidance here so I hope we see you more. If you haven't already join torticollis kids Click here: : Torticolliskids you will find that to be a great support as well. There are lots of mommies of twins here and they might be able to give you better info than I - but I don't think that all twins have plagio and what I have read and seen so far that atleast one of them has it generally related to being on the bottom and being squished all the time but it would stand to reason that both babies are more susceptible to it since in-utero constriction is such a big factor leading to plagio. I find it totally fascintaing that you are going to see an anthropologist and the thought process behind this. I am assuming that it is a physical anthropologist since they study both anthro and biology combined ... please give us a detailed description of your visit and what he/she has to say. Most here see Neurologist-we saw a Geneticist as well and/or orthopedist so I am interested in your visit if you are willing to share. At any rate- I think it would not hurt to check it out-if you are noting some flattening then I would explore it further-it cant hurt and since you are already open to helmet therapy and have one it would be a convenient time to have them both done. My son does not have tort-his plagio was caused by in utero constriction and he had neck tightening inwhich we do stretches for-but it caused him to stay in the same position and look the same direction all of the time just making matters worse. He is 51/2 months and in a DOC as well.

Well, you sound like a wonderful mommy and are doing a great job. Please let us know what you decide and how little Tommy does adjusting to his new helmet. Are you going to decorate it???? And of course keep us informed of Gavin as well. Good luck and please ask all the questions you want that's what we are here for. Welcome again!

Beck mommy to banded 3,26.01

memphis, TN

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Hi Jill.

My name is Jill too. I have twin boys too! We already have

something in common.... Anyway Josh has both tort and plagio. Jarre

has neither. Josh was baby A stuck at the bottom. ;)

Jarred's head and facial features are perfect. His poor brother got

it all! It certaily would not hurt to looked into it. I have never

heard that when one twin has plagio the other ususally does too.

Interesting......

Good luck with both boys! Keep us posted.

Jill(Mom to Josh-DOC grad & Jarred, Accord,NY)

> Hi everybody! My name is Jill Ramos and my 5 1/2 month old son gets

> his first DOC band next week! He also has torticollis. I have a

> question...Tommy is a twin, and when we went to get his head cast at

> Cranial Tech in Burbank last week, the specialist took one look at

> Gavin (other twin) and said that he has plagio also!! He wants

> Gavin's head measured by an anthropologist next week when we go to

> pick up Tommy's band. He also said that when one twin has plagio,

> the other almost always has it too. Since I was under the

impression

> that Tommy's plagio. was caused by his tort., I was a little

> startled. I will admit, however, that the back of Gavin's head is a

> little flat (although his face is symmetrical). Any input would be

> very appreciated!

> Jill Ramos, Tommy and Gavin, Ventura, Ca.

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Niki,

Thanks for replying! I do plan to have Gavin's head measured next week, and what you wrote (quoted?) made a lot of sense. It's just that every time I think we're done with all the preemie problems something else always comes up (5 weeks preemie, C-section)!

Tommy was pretty squashed in there...his head was engaged at about 30 weeks on but the cord wrapped around his neck (twice!) kept yanking him back. His feet were in my ribs and he had this habit (still does) of arching his back. Gavin, although the smaller baby by one ounce, was a total space hog!

My baby B is definitely the more outgoing one!

On another note, any recommendations for getting twins to sleep without benefit of bottle or Binky? I am sort of following the Ferber sleep method, but they wake each other up when they do their little "screamouts". Also, do yours sleep thrpugh the night?

Jill Ramos, Gavin and Tommy, Ventura, CA.

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Beck, YES, I plan to decorate Tommy's helmet! I am just debating whether to use a service available thru Cranial Therapies or to do it myself. I can draw pretty well, but this lady who does the decoration professionally apparently has a way to do it so the paint and decals don't wear off. Who knows, I may splurge ($89!).

I was a little surprised to hear an anthropologist would be measuring my sons' heads. I am looking forward to hearing this persons input and I will be sure to let everyone know what happens!!!

Jill Ramos, Gavin and Tommy, Ventura CA

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Kass,

Thank you for your support. Tommy also had a "packing problem" and I realize now that his tort was pretty obvious from birth. I went back through some photo albums and WOW, was it obvious! Even my ped. had remarked on Tommy's quirky neck when he was 2 mos. but didn't make an official diagnosis until I had him check it specifically a few weeks ago. Which wasn't really his fault, when he noticed it initially I had just finished telling him that Tommy would only sleep on his side. Otherwise he is a pretty cool ped. and I will miss him when my dh and I move to Vegas this summer.

Thanks, Jill, Tommy and Gavin Ramos, Ventura, Ca.

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Hi Jill! My name is Niki and I also have twins. Kaylie and Danny

are now 9 months old and are both in STARbands. Kaylie was Baby A,

vertex, and quite squished for the last couple of months in utero.

Although her plagio wasn't present at birth and our pediatrician said

she didn't have tort, she did develop flatness on her left side which

caused some facial assymetry. Danny was Baby B (obviously), and was

breeched (what a stinker!) Your Gavin sounds a lot like my Danny.

He has flatness on the back of the head (brachycephaly) and no facial

assymetry. The twins have been in the bands for two months now and

we have seen some improvement, especially in Danny. A couple of days

ago the subject of brachycephaly and whether or not they really

needed bands if their was no assymetry was addressed. Our

wonderfully eloquent Tim Littlefield responded by saying

(paraphrasing here) baby's with brachycephalic head shapes may have

difficulty with head control and neck musculature because the heads

majority of the weight is in front. Also there is a greater increase

for an under bite because the hinge of the jaw is pushed forward.

And there is also the concern of whether or not safety equipment

(bike helmets) would fit properly.

I highly recommend that you do get Gavin's measurements done and then

take it from there. Go with your gut instinct on this one. By the

way, there are quite a few twin moms on here, and I may be mistaken

on this one, but I think I am the only one that has both babies in

bands (feel free to correct me if I'm wrong other mommies). Take

care and good luck.

Niki

Kaylie & Danny

Phila., PA

> Hi everybody! My name is Jill Ramos and my 5 1/2 month old son

gets

> his first DOC band next week! He also has torticollis. I have a

> question...Tommy is a twin, and when we went to get his head cast

at

> Cranial Tech in Burbank last week, the specialist took one look at

> Gavin (other twin) and said that he has plagio also!! He wants

> Gavin's head measured by an anthropologist next week when we go to

> pick up Tommy's band. He also said that when one twin has plagio,

> the other almost always has it too. Since I was under the

impression

> that Tommy's plagio. was caused by his tort., I was a little

> startled. I will admit, however, that the back of Gavin's head is

a

> little flat (although his face is symmetrical). Any input would be

> very appreciated!

> Jill Ramos, Tommy and Gavin, Ventura, Ca.

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Hello Jill

Welcome to the group. I am sorry that I don't know anything about

twins and plagio, but my son didn't seem to have a noticable problem

with his facial features and he had severe plagio. I think every

case is definitely different.

I am sure that we have some mom's of twins on here and that they will

offer you some input...they are all great on this board.

Good luck to you.

Stasia

Mom to (7 months) STARband -3/01 - PA/DE

> Hi everybody! My name is Jill Ramos and my 5 1/2 month old son

gets

> his first DOC band next week! He also has torticollis. I have a

> question...Tommy is a twin, and when we went to get his head cast

at

> Cranial Tech in Burbank last week, the specialist took one look at

> Gavin (other twin) and said that he has plagio also!! He wants

> Gavin's head measured by an anthropologist next week when we go to

> pick up Tommy's band. He also said that when one twin has plagio,

> the other almost always has it too. Since I was under the

impression

> that Tommy's plagio. was caused by his tort., I was a little

> startled. I will admit, however, that the back of Gavin's head is

a

> little flat (although his face is symmetrical). Any input would be

> very appreciated!

> Jill Ramos, Tommy and Gavin, Ventura, Ca.

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Hi! Welcome to the group.

I have identical twin boys who are 9mos old now. At 2mos Baby boy A

() was diagnosed with torticollis and at 4mos he was diagnosed

with moderate-severe plagiocephaly. According to his plastic

surgeon, the plagio was a direct result from his torticollis. He was

STARBanded back in January and hopefully has only another 6-8 weeks

left.

Baby Boy B () has neither!! His head is perfectly round and his

neck has never shown any signs of torticollis. I, also, found it odd

what your doctor said about twins and plagio. From what I read and

understand, the torticollis that had was most probably caused

by a " packing defect " (which made me chuckle) meaning that his neck

got " stuck " in one position too long in my belly. I was able to

carry the boys to 38 weeks. I firmly believe that the plagio was a

direct result from his torticollis. Mine are even identical and one

has it and the other one doesn't. I believe that both twins could

definitely have it, but it doesn't mean that they both HAVE to have

it. Good Luck!

Kass

Mom to (STARBand since 1/19/01) and - 9 mos.

> Hi everybody! My name is Jill Ramos and my 5 1/2 month old son

gets

> his first DOC band next week! He also has torticollis. I have a

> question...Tommy is a twin, and when we went to get his head cast

at

> Cranial Tech in Burbank last week, the specialist took one look at

> Gavin (other twin) and said that he has plagio also!! He wants

> Gavin's head measured by an anthropologist next week when we go to

> pick up Tommy's band. He also said that when one twin has plagio,

> the other almost always has it too. Since I was under the

impression

> that Tommy's plagio. was caused by his tort., I was a little

> startled. I will admit, however, that the back of Gavin's head is

a

> little flat (although his face is symmetrical). Any input would be

> very appreciated!

> Jill Ramos, Tommy and Gavin, Ventura, Ca.

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Jill,

Hello and welcome! You will be in good company here - we have BUNCHES of

parents with twins in this group. :-)

I am sure that the parents of twins will chime in and give you their

perspective on what the orthotist said. Often times twins will both have

plagio because of being in close quarters before birth. Have you always

noticed the flatness or is it a more recent thing? I would have a specialist

look at Gavin and make the diagnosis. If the flatness that you notice is

mild, repositioning may correct the problem and the band won't be necessary.

Still, better to have the specialist make the diagnosis!

Is Tommy in physical therapy for the tort? There is another group out

there called torticolliskids that might be a good one to join. Fixing the

tort with PT will also help the plagio. I think it is GREAT that you are

getting started at 5 1/2 months. You should see excellent correction in a

shorter amount of time. Did your pediatrician diagnose the plagio? If so -

good for him/her. Many of us here had to fight our ped to get a referral to a

specialist.

I'm glad you found us and I hope you will stick with us and share more of

your story. I think you will find this group to be an excellent source of

answers, support and friendship.

Marci (Mom to )

Oklahoma

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Niki:

As the mom of preemies and twins, I can relate to your situation. Twins and preemies run a higher risk of plagio, although I have not seen anything that says both twins are usually affected. I had preemie twins also and only one had tort and plagio.

From what I have read (and am so late in putting together for Kendra!!), twins are at high risk because of the high chance of poor positioning and cramped quarters. This can seem like the same thing, but my had poor positioning because of a placenta problem. He was trapped along my uterine wall and couldn't move. This created tort which created plagio. Other twins that get bigger inutero get cramped and have little movement. This can lead to tort then plagio or just being born with plagio.

The preemie issue is also important. Preemies skulls are softer and if they have to lie in one position for a long time (if on a vent or other treatment) the soft skull and developing neck muscle will reshape to this constant position. In our NICU, the nurses made comments about how important it was to change positions (front/back and right/left), but when always the highest medical concern came first. Depending on how sick your twins were, moving the head might not have been a top priority.

As for sleeping, we used Binks (still do at 22 months). I never saw a reason not to use them and they sure do make bedtime a lot easier. It provides a soothing element and our ped dentist said that using them for infants causes no future dental issues. At 18 months we had our first dental appointment and start backing off binkys. Now they stay in the crib at all times and are not used for anything else. By 24 months we will phase them out altogether.

Best of luck treating plagio. Congrats on your preemies!

Sue Luck

mom to 4 including (DOC band graduate)

Cleveland, OH

----- Original Message -----

From: Ahappycamp4@...

Plagiocephaly

Sent: Monday, May 21, 2001 12:37 AM

Subject: Re: Re: hello, new here

Niki, Thanks for replying! I do plan to have Gavin's head measured next week, and what you wrote (quoted?) made a lot of sense. It's just that every time I think we're done with all the preemie problems something else always comes up (5 weeks preemie, C-section)! Tommy was pretty squashed in there...his head was engaged at about 30 weeks on but the cord wrapped around his neck (twice!) kept yanking him back. His feet were in my ribs and he had this habit (still does) of arching his back. Gavin, although the smaller baby by one ounce, was a total space hog! My baby B is definitely the more outgoing one! On another note, any recommendations for getting twins to sleep without benefit of bottle or Binky? I am sort of following the Ferber sleep method, but they wake each other up when they do their little "screamouts". Also, do yours sleep thrpugh the night? Jill Ramos, Gavin and Tommy, Ventura, CA. For more plagio info

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  • 1 year later...

Hi, my name is and I have joined on behalf of my non-internet friend, Tish. Tish got her saline implants about 6 months ago. Abot 2 months ago she started having very severe headaches-- so severe that her husband had to bring her to the ER a few times. No medicine they gave her worked. These headaches disrupted her entire day and lasted for hours. They happened every day for like 6 weeks. She went to a family doctor, a neurologist and various specialists. Some said it was all in her head, some said she was anxious and put her on Zoloft. She was diagnosed with cluster migranes, even though she had never had a migrane in her life.

Tish's symptoms sounded to me like auto-immune problems. She also was having fogginess, stiff joints, general malaise-- just overall didn't feel well. She kept telling me she knew something was wrong with her. She had CT scans and one doc thought she might have MS, though that was ruled out. I suggested she get an ANA test done (no doctor would order that for her-- though my husband could order it for her).

A few days ago my husband (a general surgeon) asked me how long ago Tish had her implants and it seemed to him logical that maybe her implants were causing the trouble-- though he didn't know of any research off hand that would suggest it. I mentioned it to Tish (a nurse) and she thought it could be possible but didn't know where to learn more. She called the plastic surgeon, who I am sure dismissed it because I haven't heard any more about it. As other women I'm sure have thought, Tish never thought saline implants could be unsafe.

Here's the question: do the migranes sound like a possible complication from her implants? The migranes are her biggest source of pain. Where can she find more information and how does she find out if it is the implants? I can't find recent research about saline implants-- is there any?

Thanks in advance,

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,

I think allot of us have been there and also gone through this frustration. I hope that your friend gets well but in all likelihood the implants are at the root of the problem.

My first advice to you would be to tell your friend to make sure to get all the labs and esp. the ana too, however even if these tests come up negative or positive it really won't help her to know for sure if it is her implants. In fact, for most of us we just had to finally after much soul searching, and talking with so many others with our same symptoms come to the conclusion that it had to be our implants, and most of us got them out and slowly got better.

I got sick about 3 months after getting in my saline implants, it was like one thing after another, I didn't have migraines, but I had severe dizziness and fatigue, foggy feelings, spacey feeling, memory issues, aches and pain and sick feeling. I just new it had to be the implants as I felt so weird and never felt that way before in my entire life ever! I guess my suggestion would be that she continue to seek answers through more tests and prayer and some soul searching, and that if she can get access to the computer she will find she is not alone with the problems you are describing with saline implants. I don't know why but some of us end up really sick from implants and no one wants to talk about it or explain it and no one really has answers.

There are some excellent link and files on this site, one of them worth reading is www.plastikos.com Kolb MD is a naturopathic Dr and PS and has lots of info on saline implants and silicone implants and also remember that saline is still made from silicone.

There is another site called explantation.com, this site is more for support while going through explant, which is something that as hard as it may sound to your friend she may have to consider at some point somewhere along this way.

There are stories on that site and on this one as well, the problem is that while there are allot of us out here with problems sometimes it is hard to find us.

I hope you will give her the info I have posted and also will encourage her to consider that it is in fact her implants and that she must now face the very difficult decision that she may have to explant them.

If there is any other question you have or anything else I can offer please don't hesitate to write here or at my personal email idagirl.com

Hugs

----- Original Message -----

From:

Sent: Friday, September 13, 2002 2:54 PM

Subject: Hello, new here

Hi, my name is and I have joined on behalf of my non-internet friend, Tish. Tish got her saline implants about 6 months ago. Abot 2 months ago she started having very severe headaches-- so severe that her husband had to bring her to the ER a few times. No medicine they gave her worked. These headaches disrupted her entire day and lasted for hours. They happened every day for like 6 weeks. She went to a family doctor, a neurologist and various specialists. Some said it was all in her head, some said she was anxious and put her on Zoloft. She was diagnosed with cluster migranes, even though she had never had a migrane in her life.

Tish's symptoms sounded to me like auto-immune problems. She also was having fogginess, stiff joints, general malaise-- just overall didn't feel well. She kept telling me she knew something was wrong with her. She had CT scans and one doc thought she might have MS, though that was ruled out. I suggested she get an ANA test done (no doctor would order that for her-- though my husband could order it for her).

A few days ago my husband (a general surgeon) asked me how long ago Tish had her implants and it seemed to him logical that maybe her implants were causing the trouble-- though he didn't know of any research off hand that would suggest it. I mentioned it to Tish (a nurse) and she thought it could be possible but didn't know where to learn more. She called the plastic surgeon, who I am sure dismissed it because I haven't heard any more about it. As other women I'm sure have thought, Tish never thought saline implants could be unsafe.

Here's the question: do the migranes sound like a possible complication from her implants? The migranes are her biggest source of pain. Where can she find more information and how does she find out if it is the implants? I can't find recent research about saline implants-- is there any?

Thanks in advance,

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, I was dx'd w/ migraines about 6 months after getting my implants. I had never had them before. But my migraines (as most are) were incapacitating. I was tried on Cafergot and Fioricet, with no relief whatsoever. Finally, my doc rx'd Imitrex, and with that came relief. But, the migraines finally got so bad that the Imitrex wasn't working, and I had to be rx'd the Imitrex injections, which did help. But since Imitrex can cause rebound migraines, I had to be put on Verapamil to break the vicious cycle. That did help, and even though I had to be on a very large dose of Verapamil, (360mg), it broke the cycle and kept me migraine free except for an occasional migraine about once every 3 months. That said, my rheumy said that my migraines were most likely caused by my implants. Around this same time, I started having other health problems, so he feels that it is more than likely that the implants were either directly or indirectly causing the migraines. You can read my story in the files section. I, too, am a registered nurse, and feel like I was completely duped by the whole implant issue. e ----- Original Message ----- From: Sent: Friday, September 13, 2002 3:04 PM Subject: Hello, new here Hi, my name is and I have joined on behalf of my non-internet friend, Tish. Tish got her saline implants about 6 months ago. Abot 2 months ago she started having very severe headaches-- so severe that her husband had to bring her to the ER a few times. No medicine they gave her worked. These headaches disrupted her entire day and lasted for hours. They happened every day for like 6 weeks. She went to a family doctor, a neurologist and various specialists. Some said it was all in her head, some said she was anxious and put her on Zoloft. She was diagnosed with cluster migranes, even though she had never had a migrane in her life. Tish's symptoms sounded to me like auto-immune problems. She also was having fogginess, stiff joints, general malaise-- just overall didn't feel well. She kept telling me she knew something was wrong with her. She had CT scans and one doc thought she might have MS, though that was ruled out. I suggested she get an ANA test done (no doctor would order that for her-- though my husband could order it for her). A few days ago my husband (a general surgeon) asked me how long ago Tish had her implants and it seemed to him logical that maybe her implants were causing the trouble-- though he didn't know of any research off hand that would suggest it. I mentioned it to Tish (a nurse) and she thought it could be possible but didn't know where to learn more. She called the plastic surgeon, who I am sure dismissed it because I haven't heard any more about it. As other women I'm sure have thought, Tish never thought saline implants could be unsafe. Here's the question: do the migranes sound like a possible complication from her implants? The migranes are her biggest source of pain. Where can she find more information and how does she find out if it is the implants? I can't find recent research about saline implants-- is there any? Thanks in advance,

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Hi ,

Thanks for writing on behalf of your friend, and for being such a caring person.

If you have looked around our website, you will see that there is a section under "Files" devoted to studies on the harm of silicone in the body. You might find something of interest there.

One of the most recent studies cited is the one from May 2001, ls of Epidemiology, that shows implanted women having higher rates of brain cancer, lung cancer, and suicide, and another study in that same month I believe showed women with silicone gel implants having fibromyalgia. That study is cited in the files section.

I do remember reading in Dr. Henry 's book on saline breast implants about a woman who suffered from severe migraines after she got saline implants, and she later died of a stroke. I don't know of any statistics for you that I can quote about the incidence of migraines among implanted women, but I do know that neurological complaints are a frequent, classic symptom.

You might want to go to Dr. Kolb's website at www.plastikos.com and view all of her articles on the silicone catastrophe, as well as her Newsletter on implants. Go to the Plastikos surgery center link, and you will see all the links to the articles as you scroll down the page. This might help you in your search for answers, from qualified MD's.

It sounds to me like it is very likely that your friends implants are doing her some harm. The safest thing she can do would be to get them removed, but she may want to try some detoxing therapies first. However, migraines are no fun, and neurological disease is very serious, so it may not be something she wants to take a chance on.

Please let us know if we can be of any further help, and thanks for writing!

Patty

----- Original Message -----

From:

Sent: Friday, September 13, 2002 1:54 PM

Subject: Hello, new here

Hi, my name is and I have joined on behalf of my non-internet friend, Tish. Tish got her saline implants about 6 months ago. Abot 2 months ago she started having very severe headaches-- so severe that her husband had to bring her to the ER a few times. No medicine they gave her worked. These headaches disrupted her entire day and lasted for hours. They happened every day for like 6 weeks. She went to a family doctor, a neurologist and various specialists. Some said it was all in her head, some said she was anxious and put her on Zoloft. She was diagnosed with cluster migranes, even though she had never had a migrane in her life.

Tish's symptoms sounded to me like auto-immune problems. She also was having fogginess, stiff joints, general malaise-- just overall didn't feel well. She kept telling me she knew something was wrong with her. She had CT scans and one doc thought she might have MS, though that was ruled out. I suggested she get an ANA test done (no doctor would order that for her-- though my husband could order it for her).

A few days ago my husband (a general surgeon) asked me how long ago Tish had her implants and it seemed to him logical that maybe her implants were causing the trouble-- though he didn't know of any research off hand that would suggest it. I mentioned it to Tish (a nurse) and she thought it could be possible but didn't know where to learn more. She called the plastic surgeon, who I am sure dismissed it because I haven't heard any more about it. As other women I'm sure have thought, Tish never thought saline implants could be unsafe.

Here's the question: do the migranes sound like a possible complication from her implants? The migranes are her biggest source of pain. Where can she find more information and how does she find out if it is the implants? I can't find recent research about saline implants-- is there any?

Thanks in advance,

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  • 1 year later...
Guest guest

Hi ,

My husband has been doing pottery since he retired about ten years ago.

If you want to continue being a potter/ceramic artist, you certainly do

need to preserve those wrist and finger joints.

I think that exercise does help my RA. I ride on a stationary bike,

which is relatively easy on the joints. All this week I've been sick

with a cold so haven't felt like doing any and feel that I'm getting

out of shape.

Do you have a rheumatologist? If not, you need to get one. They are

best equipped to help you manage the disease of RA. Sometimes it takes

as long as six months to get in to see one. There are so many new

drugs, especially the biologics (Remicade, Enbrel, and Humira) that

seem to stop joint erosion in many people. The old tried and true,

though, is methotrexate, and that is what many rheumies start their

patients on. It is much cheaper and works very well in some people.

Prednisone, a steroid, works to relieve pain and inflammation, but has

a great many undesirable side effects. It's the drug we love to hate,

so I got off of it as soon as I could. I have also been on methotrexate

and Arava but am now on Enbrel, which is working wonderfully well for

me.

Our moderators, a and , are wonderful at posting links to

articles about RA and other immune diseases. Just ask any questions you

may have, and they'll pop up with some answers. This is a wonderful

place for support and understanding.

Sue

On Friday, May 28, 2004, at 08:30 PM, wrote:

>

> My name is . I'm new to the list, and am newly diagnosed with

> seronegative rheumatoid arthritis.

>

> I'm feeling overwhelmed, and more than a little frightened, at this

> point, at having a chronic disease. Also, I'm a potter/ceramic artist,

> and am concerned about my ability to continue with that long-term. I

> want to, and I guess what I'd like is support and information on

> keeping joints as healthy as possible.

>

> Diet? Exercise? Drugs? Alternatives? I'm wondering about all of them,

> of course. I'm doing quite a bit of reading, but am also looking

> forward to learning from the folks on this list.

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