Just diagnosed

[Guest guest]

My daughter was 9 months when she started. She received 80% correction in 12 weeks. She has rounded more since graduating. That was with no big growth spurts. I'm sure others will chime in who started at an older age.

I also noticed from the start that Jenna's head was mishapen. We didn't get the referral until she was 6 months. It took as 3 months to get into the specialist.

As long as his stutures are open, I believe CT will band up until 24 months. The STARband I believe will band up t0 18 months.

Welcome to the group! Please let us know what the plastic surgeon says on Monday.

Angie and Jenna(STARband grad 1/21/03)

Just diagnosed

RIght from the beginning I noticed that Tyler's head was slanted. At every well baby visit, I would bring it up. The told me to reposition Tyler's head during sleeping and that would solve it. I wish I followed my gut and changed doctors earlier! I just switched doctors and now he now he has been diagnosed with torticollis and plagiocephaly. We see a plastic surgeon on Monday. We've been to physical therapy and they say it will help him get full range of motion. I'm worried about the shape of his head. He is already 15 months old. I just hope it's not too late. Has anyone had success with an older child?For more plagio info

[Guest guest]

Welcome, Well Tort and Plagio most definitely go hand in hand. I'm

sorry about your ped brushing off your concerns about Tyler.

Unfortunately, that is all too common in the world of Plagio. It is

good that they have him in PT now, that will help bunches. My

daughter was 8.5 months when she was banded and 11 months when she

graduated. There are quite a few older babies here that rec'd good

correction banding at that age. I'm sure they will chime in here and

give you some good advice. What part of the world are you located?

you can go to www.cranialtech.com and see if there is a location near

you, they do free consulations. Good Luck and keep us posted.

Dustie

> RIght from the beginning I noticed that Tyler's head was slanted.

At

> every well baby visit, I would bring it up. The told me to

> reposition Tyler's head during sleeping and that would solve it. I

> wish I followed my gut and changed doctors earlier! I just

switched

> doctors and now he now he has been diagnosed with torticollis and

> plagiocephaly. We see a plastic surgeon on Monday. We've been to

> physical therapy and they say it will help him get full range of

> motion. I'm worried about the shape of his head. He is already 15

> months old. I just hope it's not too late. Has anyone had success

> with an older child?

[Guest guest]

Hello mama to Tyler. My son Jeffry wore a locally made helmet, and Jeffry

was 6 months old when we first started all of this, but he was done at 15

months, but yet, some places do cast and make helmets for older children,

Mayo Clinic, were we doctor and got our helmets, will cast until the age of

18 months, but it all does depend on the child. I understand about changing

doctors, I think that about 85% off us on this board have changed doctors.

It it just a terrible thing that they do not ketch this until too late,

because they are just not knoweldgeable about plagio. It is very

surpriseing, how many people, and doctors that don't know about this. I

wish you the best and keep us all informed. Best wishes, Heidi, mom to

Jeffry, local helmet grad, MN

Hugs & Drool,

Jeffry, Heidi & Brett

Zimmerman

>From: " mamaoftyler " <mamaoftyler@...>

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: Just diagnosed

>Date: Thu, 01 May 2003 19:19:27 -0000

>

>RIght from the beginning I noticed that Tyler's head was slanted. At

>every well baby visit, I would bring it up. The told me to

>reposition Tyler's head during sleeping and that would solve it. I

>wish I followed my gut and changed doctors earlier! I just switched

>doctors and now he now he has been diagnosed with torticollis and

>plagiocephaly. We see a plastic surgeon on Monday. We've been to

>physical therapy and they say it will help him get full range of

>motion. I'm worried about the shape of his head. He is already 15

>months old. I just hope it's not too late. Has anyone had success

>with an older child?

>

>

>

>For more plagio info

[Guest guest]

Hi,

Welcome to the group. It's not too late to get your son banded. You

would have to go w/an active band. Cranial Tech, they make the

DOCband will band a baby up until 24 mths old. You can check them out

at http://www.cranialtech.com

Orthomerica will band a baby up until 18mths and you can check them

out at http://www.orthomerica.com

You will DEFINITELY have to go with either the DOCband or the

STARband because they are active bands. A passive band won't work for

a baby your son's age. The difference between an active band and a

passive helmet is that an active band redirects the growth of the

head through gentle pressure not felt by the baby. A passive helmet

relies totally on growth. It sits on the baby's head and eventually

the baby's head will grow into the shape of the helmet,round.

On the Cranial Tech web sites you can read about studies they've done

treating " older " babies.

Please keep us posted.

> RIght from the beginning I noticed that Tyler's head was slanted.

At

> every well baby visit, I would bring it up. The told me to

> reposition Tyler's head during sleeping and that would solve it. I

> wish I followed my gut and changed doctors earlier! I just

switched

> doctors and now he now he has been diagnosed with torticollis and

> plagiocephaly. We see a plastic surgeon on Monday. We've been to

> physical therapy and they say it will help him get full range of

> motion. I'm worried about the shape of his head. He is already 15

> months old. I just hope it's not too late. Has anyone had success

> with an older child?

[Guest guest]

Kim,

I am sorry to hear you have RA and the herniated discs. It is not an easy

road that you have ahead of you, however, as my doctor likes to say it is a

" life sentence " not a " death sentence " . That helps me get through the tougher

times. You will have good days and bad days as with any illness, I won't sugar

coat that, however, the disease is so different for each person that you just

never know what may lie ahead. I also have young children, my youngest is six.

I too worry about being there for her as she gets older, but there are different

ways to be there for her than I had originally thought. Sometimes just being

there to listen is enough for my children. I won my disability almost two years

ago and yes I miss working and the freedom it gave me, but I also do enjoy the

extra time with my children and they enjoy me being here for them more

emotionally and as I said just to listen. Try to focus on the positive and know

that we are here for you for your questions,

during your difficult times, etc. This is a wonderful group full of people who

understand your disease. Also, never stop praying for the cure! I pray for

that every day. Good luck to you and you can email me anytime if you just need

a friend at tracierae143@... I promise I am harmless. Good luck to you.

The anger and sadness are perfectly normal reactions to your diagnosis. We have

all been through it at one time or another.

Take care and keep us posted on your visits,

Tracie from Maine

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

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

countries) for 2¢/min or less.

[Guest guest]

Hi

I am not medically trained. But based on what I have read and learnt, it sounds like your genetics doctor is right.

Take a look here:

http://www.geneclinics.org/servlet/access?db=geneclinics & site=gt & id=8888891 & key=yvyThuThGZXK5 & gry= & fcn=y & fw=suti & filename=/profiles/bpes/index.html

especially the section called "management".

However, I suggest that you try to read the whole article, perhaps with the help of a doctor or geneticist.

I hope you find it useful.

It is my understanding that consulting an endocrinologist is sufficient - there is no special need to see an endocrinologist with specific experience of BPES.

As I said - I am not medically trained, and therefore, am not in a position to say anything which is seen to be a treatment option.

Regards

Shireen Mohandes

London, England

From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of chrissyj30Sent: 13 February 2007 13:44blepharophimosis Subject: blepharophimosis Just Diagnosed

Hi All,I am very unfamiliar with BPES and have only started research on it. My daughter who is 13 was clinically diagnosed with it back in June of 06. We had blood work done and it was sent to Belgium. This confirmed her diagnosis. We are going to a genetics doctor but he doesn't seem to know very much about BPES. I was wondering now that we have a diagnosis what steps should we take in order to find out what Type she has. If any one also knows a doctor in the USA that is familiar with this please let me know. For years we have been working with doctors who have had no clue. The genetics doctor did say that we should see an endocrinologist. On another note: I read the message about the lady just finding out what type of BPES she has and whether or not she wants to have children naturally or from an egg donor. I can tell you my daughter suffers every day because she looks different. Kids pick on her because she has different eyes. I am guessing them picking on her has just started since she is in middle school. I know that this is a tough age group anyway and kids will say anything to make themselves look better. She has social anxiety which makes it even harder for her to make friends. She is a great kid with a heart of gold. So I guess I can understand only from a mothers point of veiw what the other lady was saying in regards to her childhood. Have a good day all. on from New Hampshire USA

[Guest guest]

Hello!

I was just diagnosed with CML. I'm looking for some advise....I

was diagnosed in mexico after a routine exam....in process to apply for

glivec.....since my diagnostic was in mexico I'm looking for a doc here

in Las Vegas or center for my treatment......Thanks!

[Guest guest]

You could go online to yellow.com and look one up. Hopefully, someone from Las

Vegas will answer you back. Good Luck!

[ ] Just diagnosed

Hello!

I was just diagnosed with CML. I'm looking for some advise....I

was diagnosed in mexico after a routine exam....in process to apply for

glivec.....since my diagnostic was in mexico I'm looking for a doc here

in Las Vegas or center for my treatment... ...Thanks!

[Guest guest]

,

In 2000 I was unable to move for 2 months until I got in to see my Rheumy, the

primary had given up on me. My Rheumy started me on 3 mtx pills once a week (2

folic acids to go along with that daily). The turnaround was quick and almost

instant. I am currently on 2 mtx pills a week and remicade (just added that 6

months ago to wipe out specific pain, heels and elbows) and could have been back

to work in 2000 if I had wanted to. I do clean 2 homes, just my mad money, my

husband is our breadwinner and I'm thankful for that. I think mtx gets a bad

rap, not that some of the people that post on this site don't have issues with

it but I know there are alot that do not. The only side effect I have is slight

thinning of hair (and since I'm 51, could that be age too?), I'm not tired, I

don't get sick from it. Try it, it may work really well for you.

mary

[ ] Just Diagnosed

I have been recently diagnosed with rheumatoid arthritis and have

been in constant pain for more than 12 weeks. I have recently seen a

rheumatologist and he would like to start me on Methotrexate. I am

currently on prednisone as well as vicodin for the pain. These

however all not helping me function normally. I am also on cymbalta

for my depression I am feeling for not being able to move or even

dress myself. I have sleeping downstairs for December because

climbing stairs is very painful. I sometimes wish I would die just

because I am tires of people having to help me every day. If it were

not for my fiancé I would be lost right now she does so much for me,

I sometimes feel she will leave me because she will grow tired of my

condition. But deep down I know she will always be there for me, and

she just wants me to get better. I have been out of work since

December due to the fact that I am unable to drive and walk without

feeling a constant pain in all my joints. I am also very tired all

the time and sleep any chance I get. Is taking the Methotrexate

worth the side effects?

I am a 34 year old male by the way. I found this forum site just

researching the internet the other day and everyone on here sounds

very helpful and caring. I have also been having headaches and a

slight sore throat for the past couple of months as well. I would

like to thank everyone in advance for reading my post and letting me

get my feelings and worries out in this post.

Thank You,

[Guest guest]

,

You need to ask your doctor for some physical and occupational therapy.

They will help you learn how to move, dress yourself etc .There are many

things that you can buy to help with your daily tasks. Check out www

arthritis.org I believe that is the site .

Many people can take MTX without any problems at all! It is worth a try to

see how it works for you! The Vicodin can be making you tired too !

Narcotics will make you drowsy.

I know it is hard, but you need to get up and moving around as much as you

can ! The more you move, the better you will feel !

Also attitude has a lot to do with how we feel !!! We can choose to be

defeated or we can defeat what is defeating us !!! I know you are in pain,

not feeling well, but sitting and feeling sorry for oneself will not make

you feel better, I do not mean to sound belittling, mean or rude, but I have

found in myself if I sit and feel sorry for myself, I feel worse then if I

get up and try to do it or find a way to do it !

There is a lot of help out there for people with RA, and many meds you can

take to help too. If one does not work, move to a different ones, and OT

will really help you to learn to adapt your surroundings to make it easier

for you ! PT will help you exercise and get moving.

If you get on the right meds and all you may be able to work and be back in

a job sooner then you think !!! It is awesome your fiance is so willing to

help you! A great support system is what you need !!! And it sounds like

you have that covered. I do not know what I would do without my husband and

family.

It is not unusual either to feel as you do. I know I did, and I bet everyone

on this list felt the same way too. Just get up move, find the right doc and

meds, and you rule over the RA and not the RA over you !!!! I will keep you

in my prayers !!!

Debbie A

Have a great day !

-- [ ] Just Diagnosed

I have been recently diagnosed with rheumatoid arthritis and have

been in constant pain for more than 12 weeks. I have recently seen a

rheumatologist and he would like to start me on Methotrexate. I am

currently on prednisone as well as vicodin for the pain. These

however all not helping me function normally. I am also on cymbalta

for my depression I am feeling for not being able to move or even

dress myself. I have sleeping downstairs for December because

climbing stairs is very painful. I sometimes wish I would die just

because I am tires of people having to help me every day. If it were

not for my fiancé I would be lost right now she does so much for me,

I sometimes feel she will leave me because she will grow tired of my

condition. But deep down I know she will always be there for me, and

she just wants me to get better. I have been out of work since

December due to the fact that I am unable to drive and walk without

feeling a constant pain in all my joints. I am also very tired all

the time and sleep any chance I get. Is taking the Methotrexate

worth the side effects?

I am a 34 year old male by the way. I found this forum site just

researching the internet the other day and everyone on here sounds

very helpful and caring. I have also been having headaches and a

slight sore throat for the past couple of months as well. I would

like to thank everyone in advance for reading my post and letting me

get my feelings and worries out in this post.

Thank You,

[Guest guest]

Hi, I just read your e-mail and feel for you, I to have been doing

alot of the same, only I don't have an upstairs, but just the same have

no longer been able to work, for 1 yr, now, I did try going back to a

different type of employment in Nov. but only lasted 2 weeks and belive

it made me worse. It gets very depressing knowing I no longer can to

contribute the way I use to. I have a husband who is a very hard worker,

he is a fisherman and is alot of the time gone for long periods of time

then has to come home and do alot of the things here around the house

and COOKING for himself, that I use to do. I was on the Methotrexate and

it did not agree with me like alot of the different meds. they have

tried me on, the headaches,and sore throat sound like the side effects

that can come with it, and I did suffer with the sore throat, then

itching so was taken off, I did not feel it did me any good though

either, my mother also had been on it developed a rash and was taken off

immeditely, it is one of those meds that is good and guess can do good

if u don't develope any side effects. I have been through soooo many

meds and had more side effects before I could know if they would work I

am totally discourged also. I could not take the predisone either, have

they tried you on the Liboderm patches?, they can be helpful for some

pain control. I recently was had to stop another med they had given me

along with vicodin, I have been on for YEARS, and can not move until I

have that in me from the minute I open my eyes, I wake in pain. I also

have a very caring, patient, and understanding husband, but wonder why

would anyone want to put up with someone so incapacitated who can no

longer do much for themself, but he does. I just recently have had the

thoughts of I have had enough, and is this what the rest of life is

going to be?, but I would not want to take my life, just find a Big deep

valley to stand on top and yell the heck out of myself! I can not stand

the pain anymore, always worked and worked through it but every step is

a struggle. I have a knee that needs replacement but they won't do it

say I am to young, I am alot older then you, but yet to young yet for

replacement. I was on effexor, which after several others they put me

on basically to help with pain control, did not work this did work, and

had cut down on vicodin, but developed side effects and had to come off

another med!, now I just want to scream all the time like I have built

up inside maybe all these yrs of dealing with my pain, and losing

independence, and people having to help me. I just wanted you to know,

that you are young yet, and hopefully will find relief, don't feel u

should die, because u need help, I am sure your fiance loves u no matter

what, and don't push her away ever. I don't know if you have ever tried

acupuncture, but if my insurance would cover or I could afford it that

was the best relief I found along with massage weekly. I recommend the

smaller needles, did not go for the long ones. By the way I did not

tell u it is not ruehmo. I have it is another type of strange arthritis

I have along with fibromialgia, and though a bit different know now I

am in for the long haul, and should of listened to my Dr's a few yrs ago

when they told me to slow down, and remember I had to adjust my life to

not be so active when my body was telling me to take a rest. Best of

luck to you. And don't give up or give in to this disease. Keep

going.

>

> I have been recently diagnosed with rheumatoid arthritis and have

> been in constant pain for more than 12 weeks. I have recently seen a

> rheumatologist and he would like to start me on Methotrexate. I am

> currently on prednisone as well as vicodin for the pain. These

> however all not helping me function normally. I am also on cymbalta

> for my depression I am feeling for not being able to move or even

> dress myself. I have sleeping downstairs for December because

> climbing stairs is very painful. I sometimes wish I would die just

> because I am tires of people having to help me every day. If it were

> not for my fiancé I would be lost right now she does so much for

me,

> I sometimes feel she will leave me because she will grow tired of my

> condition. But deep down I know she will always be there for me, and

> she just wants me to get better. I have been out of work since

> December due to the fact that I am unable to drive and walk without

> feeling a constant pain in all my joints. I am also very tired all

> the time and sleep any chance I get. Is taking the Methotrexate

> worth the side effects?

> I am a 34 year old male by the way. I found this forum site just

> researching the internet the other day and everyone on here sounds

> very helpful and caring. I have also been having headaches and a

> slight sore throat for the past couple of months as well. I would

> like to thank everyone in advance for reading my post and letting me

> get my feelings and worries out in this post.

>

> Thank You,

>

>

>

[Guest guest]

-Hi Kim,

I'm like you. Newly diagnosed with small children. I feel sad too so at least

you are not

alone. My neck was hurting and I have a ruptured disk also. I've had a million

x-rays at

many MRI yet no provider put the picture together? To top it off, I just had

two metal hip

replacements and just read an article about how people with inflammatory disease

should

not have metal implats-they cause lymphoma! Yikes. How depressing is that?

I think we'll learn a lot from the folks on this site. Feel free to drop me a

line.

-- In , " rladere " <rladere@...> wrote:

>

> Hi, I just found this support group and thought I would say " HI " .

> I was diagnosed with RA 2 weeks ago . I haven't been to the

> Arthritis Doc yet.

> When I went to my family Dr and told her about the problems with

> achy joints and neck . I thought she would tell me it was a normal

> part of aging. Instead she has me get some blood work and an MRI.

> Both tests came back showing problems. The blood work RA+ and the

> MRI hernaited disk with nerve compression.

> I have been to a Neuro Surgeon this last week. He diagnosed me with

> Degenerative disk disease. With two herniated disk.

> My question is this... Will I ever get good news again?

> I have so many questions running through my head. I don't know

> weather to cry or get mad.

> This week I go to 2 more specialist. One for my neck and the

> Arthritis Dr.

> I feel like my life is doomed. Will I beable to take care of my kids

> when they hit thier teenage years ? My youngest are 5 & 6.

> How can I live for another 40 some years with this amount of pain

> and limited movement in my joints?

> And how do people deal with this when your the only one in your

> family that has this disease? My Mom is so quiet when I talk to her

> about it.Like if she admits I have it , it will kill her.

> I'm sorry for the lengthy massage.

> Kim

>

[Guest guest]

For me, the methotrexate was a life saver. I myself have never had any side

problems from it and it greatly improved my quality of life for several years.

I've now also been put on Remicade and again, no side affects and a dramatic

improvement in how I felt for a couple of years. I would certainly work w/your

rheumi to find what will work for you. If you are still that uncomfortable then

something else needs to be added to your cocktail.

ortizd73 <ortizd73@...> wrote:

I have been recently diagnosed with rheumatoid arthritis and have

been in constant pain for more than 12 weeks. I have recently seen a

rheumatologist and he would like to start me on Methotrexate. I am

currently on prednisone as well as vicodin for the pain. These

however all not helping me function normally. I am also on cymbalta

for my depression I am feeling for not being able to move or even

dress myself. I have sleeping downstairs for December because

climbing stairs is very painful. I sometimes wish I would die just

because I am tires of people having to help me every day. If it were

not for my fiancé I would be lost right now she does so much for me,

I sometimes feel she will leave me because she will grow tired of my

condition. But deep down I know she will always be there for me, and

she just wants me to get better. I have been out of work since

December due to the fact that I am unable to drive and walk without

feeling a constant pain in all my joints. I am also very tired all

the time and sleep any chance I get. Is taking the Methotrexate

worth the side effects?

I am a 34 year old male by the way. I found this forum site just

researching the internet the other day and everyone on here sounds

very helpful and caring. I have also been having headaches and a

slight sore throat for the past couple of months as well. I would

like to thank everyone in advance for reading my post and letting me

get my feelings and worries out in this post.

Thank You,

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

Never miss a thing. Make your homepage.

[Guest guest]

Kim- In support of your fears of will u be able to care for your

teenage children, and how can u go one with that much pain for a

lenghthy amount of yrs. I am you, in a sense, only no one back then did

the test, or diagnoised me up until just 4 yrs ago. I lived in pain and

thought I had bone cancer when my 3 children were 5 and under, I could

not even pick them up,let them touch me without awful pain, did alot of

crying, because I felt for them more then the pain and used to pray just

let me be able to mother them until they grew and were on there own.

Here I am a g. mother, still in pain, terrible pain, but I had lots of

good days back then. It took several Dr's many MRI's to get my

diagnois, I am a frequent flyer there. You will make it with your kids,

I think though they can be tiring it is the inspiration of watching and

listening to the mouth of babes that get u through the rough times.

Sharon

> >

> > Hi, I just found this support group and thought I would say " HI " .

> > I was diagnosed with RA 2 weeks ago . I haven't been to the

> > Arthritis Doc yet.

> > When I went to my family Dr and told her about the problems with

> > achy joints and neck . I thought she would tell me it was a normal

> > part of aging. Instead she has me get some blood work and an MRI.

> > Both tests came back showing problems. The blood work RA+ and the

> > MRI hernaited disk with nerve compression.

> > I have been to a Neuro Surgeon this last week. He diagnosed me with

> > Degenerative disk disease. With two herniated disk.

> > My question is this... Will I ever get good news again?

> > I have so many questions running through my head. I don't know

> > weather to cry or get mad.

> > This week I go to 2 more specialist. One for my neck and the

> > Arthritis Dr.

> > I feel like my life is doomed. Will I beable to take care of my kids

> > when they hit thier teenage years ? My youngest are 5 & 6.

> > How can I live for another 40 some years with this amount of pain

> > and limited movement in my joints?

> > And how do people deal with this when your the only one in your

> > family that has this disease? My Mom is so quiet when I talk to her

> > about it.Like if she admits I have it , it will kill her.

> > I'm sorry for the lengthy massage.

> > Kim

> >

>

[Guest guest]

Hang in there ! I believe the side effects of the Methotrexate are worth

it. You just have to stick with it to see if it works for you. I'm currently

on Humira and Methotrexate and the combination has made a big difference for me.

I can now walk without limping! I'm only 31 so I know what it's like to grieve

for the life that you once had and have to realize that the rest of your life is

going to be very different from what you thought it was. But the medications

really have worked for me so I just try to keep up a positive attitude.

HTH,

Lori

http://home.comcast.net/~queenstitcher/

http://stitchingqueen.multiply.com

[ ] Just Diagnosed

I have been recently diagnosed with rheumatoid arthritis and have

been in constant pain for more than 12 weeks. I have recently seen a

rheumatologist and he would like to start me on Methotrexate. I am

currently on prednisone as well as vicodin for the pain. These

however all not helping me function normally. I am also on cymbalta

for my depression I am feeling for not being able to move or even

dress myself. I have sleeping downstairs for December because

climbing stairs is very painful. I sometimes wish I would die just

because I am tires of people having to help me every day. If it were

not for my fiancé I would be lost right now she does so much for me,

I sometimes feel she will leave me because she will grow tired of my

condition. But deep down I know she will always be there for me, and

she just wants me to get better. I have been out of work since

December due to the fact that I am unable to drive and walk without

feeling a constant pain in all my joints. I am also very tired all

the time and sleep any chance I get. Is taking the Methotrexate

worth the side effects?

I am a 34 year old male by the way. I found this forum site just

researching the internet the other day and everyone on here sounds

very helpful and caring. I have also been having headaches and a

slight sore throat for the past couple of months as well. I would

like to thank everyone in advance for reading my post and letting me

get my feelings and worries out in this post.

Thank You,

[Guest guest]

,

Would you mind posting the article you read about hip replacements and

lymphoma?

Thanks.

Not an MD

> [ ] Re: Just Diagnosed

>

> -Hi Kim,

>

>

> I'm like you. Newly diagnosed with small children. I feel sad too so at

least you are

> not

> alone. My neck was hurting and I have a ruptured disk also. I've had a

million x-rays

> at

> many MRI yet no provider put the picture together? To top it off, I just

had two metal

> hip

> replacements and just read an article about how people with inflammatory

disease

> should

> not have metal implats-they cause lymphoma! Yikes. How depressing is

that?

>

> I think we'll learn a lot from the folks on this site. Feel free to drop

me a line.

>

>

[Guest guest]

,

I'm sorry about your RA diagnosis and that you are having such a difficult

time. Do not give up. There are many ways to manage RA effectively.

Most people can use methotrexate (MTX) without serious problems. Be sure to

ask your rheumatologist about how much folic acid you should be taking along

with your MTX, because folic acid can help minimize possible side effects.

The injectable form of MTX is usually more effective than the pills, and

many people here report that it is easier to tolerate.

MTX is one of the best disease-modifying antirheumatic drugs (DMARDs)

available to treat RA. The chance it will help you far outweighs the chance

it will hurt you. Please give it a try. You might be pleasantly surprised.

Not an MD

> [ ] Just Diagnosed

>

> I have been recently diagnosed with rheumatoid arthritis and have

> been in constant pain for more than 12 weeks. I have recently seen a

> rheumatologist and he would like to start me on Methotrexate. I am

> currently on prednisone as well as vicodin for the pain. These

> however all not helping me function normally. I am also on cymbalta

> for my depression I am feeling for not being able to move or even

> dress myself. I have sleeping downstairs for December because

> climbing stairs is very painful. I sometimes wish I would die just

> because I am tires of people having to help me every day. If it were

> not for my fiancé I would be lost right now she does so much for me,

> I sometimes feel she will leave me because she will grow tired of my

> condition. But deep down I know she will always be there for me, and

> she just wants me to get better. I have been out of work since

> December due to the fact that I am unable to drive and walk without

> feeling a constant pain in all my joints. I am also very tired all

> the time and sleep any chance I get. Is taking the Methotrexate

> worth the side effects?

> I am a 34 year old male by the way. I found this forum site just

> researching the internet the other day and everyone on here sounds

> very helpful and caring. I have also been having headaches and a

> slight sore throat for the past couple of months as well. I would

> like to thank everyone in advance for reading my post and letting me

> get my feelings and worries out in this post.

>

> Thank You,

>

>

[Guest guest]

I am 32, was diagnosed with RA 6 months ago and started methotrexate

and Plaquinel. At the time my knees, hips, and hands hurt a lot. I

have been off work since August. After 3 months on the medications,

most of my pain disappeared. Every week, if I am late taking my

methotrexate, the pain in my right knee returns and is a big reminder

of what this drug can do. I also have Fibromyalgia but am as close

to remission as I am going to get. I was an Occupational Therapist

so I cannot go back to my job (lifting/bending). But I can take care

of my 3 year son again and can even run after him in an emergency. I

feel like I can do some of my responsibilities instead of almost

none.

>

> Hang in there ! I believe the side effects of the

Methotrexate are worth it. You just have to stick with it to see if

it works for you. I'm currently on Humira and Methotrexate and the

combination has made a big difference for me. I can now walk without

limping! I'm only 31 so I know what it's like to grieve for the life

that you once had and have to realize that the rest of your life is

going to be very different from what you thought it was. But the

medications really have worked for me so I just try to keep up a

positive attitude.

> HTH,

> Lori

> http://home.comcast.net/~queenstitcher/

> http://stitchingqueen.multiply.com

>

>

>

> [ ] Just Diagnosed

>

>

> I have been recently diagnosed with rheumatoid arthritis and have

> been in constant pain for more than 12 weeks. I have recently

seen a

> rheumatologist and he would like to start me on Methotrexate. I

am

> currently on prednisone as well as vicodin for the pain. These

> however all not helping me function normally. I am also on

cymbalta

> for my depression I am feeling for not being able to move or even

> dress myself. I have sleeping downstairs for December because

> climbing stairs is very painful. I sometimes wish I would die

just

> because I am tires of people having to help me every day. If it

were

> not for my fiancé I would be lost right now she does so much for

me,

> I sometimes feel she will leave me because she will grow tired of

my

> condition. But deep down I know she will always be there for me,

and

> she just wants me to get better. I have been out of work since

> December due to the fact that I am unable to drive and walk

without

> feeling a constant pain in all my joints. I am also very tired

all

> the time and sleep any chance I get. Is taking the Methotrexate

> worth the side effects?

> I am a 34 year old male by the way. I found this forum site just

> researching the internet the other day and everyone on here

sounds

> very helpful and caring. I have also been having headaches and a

> slight sore throat for the past couple of months as well. I would

> like to thank everyone in advance for reading my post and letting

me

> get my feelings and worries out in this post.

>

> Thank You,

>

>

>

>

>

>

>

>

[Guest guest]

Hi - I see that a lot of people on the list have answered you

already but I thought I'd chime in too. I think many of us have been

where you are, I know I have. But things are rosier now.

I was diagnosed with RA in November. At the time I could barely walk

because of my feet/ankles/knees and my hands weren't very functional

either. My pcp gave me vicodin and Mobic for the pain and

inflammation but it wasn't doing a lot. I had a sore throat on and

off (and still do - I think it's the RA in my case), and am on

depression meds as well. I also had the same worries about my

boyfriend as you do about your girlfriend.

I started Methotrexate at the beginning of December and am pretty

much fully functional again, after 2 months. I can walk without pain

and use my hands almost normally. I still have some stiffness and

periodic small flares but I feel like I've regained my life!

I take 6 MTX pills once a week. And I *do* have some side effects.

While I take folic acid daily, I'm one of those folks that has the

stomach upset and general " flu-ish " feeling for the two days after I

take it. Fortunately, I take the med on Friday so I have the weekend

to recover. My hair is also thinning a bit.

But these side effects are FAR outweighed by the improvement I've

seen. I am more than willing to live with them for 2 days a week if

the other 5 are this much better! - MTX is my new best friend! :-)

So, hang in there. Find out what works for you. Learn as much as you

can about RA. This is a great place for info and support.

Kim

(email me offlist if you'd like)

>

> I have been recently diagnosed with rheumatoid arthritis and have

> been in constant pain for more than 12 weeks. I have recently seen

a

> rheumatologist and he would like to start me on Methotrexate. I am

> currently on prednisone as well as vicodin for the pain. These

> however all not helping me function normally. I am also on cymbalta

> for my depression I am feeling for not being able to move or even

> dress myself. I have sleeping downstairs for December because

> climbing stairs is very painful. I sometimes wish I would die just

> because I am tires of people having to help me every day. If it

were

> not for my fiancé I would be lost right now she does so much for

me,

> I sometimes feel she will leave me because she will grow tired of

my

> condition. But deep down I know she will always be there for me,

and

> she just wants me to get better. I have been out of work since

> December due to the fact that I am unable to drive and walk without

> feeling a constant pain in all my joints. I am also very tired all

> the time and sleep any chance I get. Is taking the Methotrexate

> worth the side effects?

> I am a 34 year old male by the way. I found this forum site just

> researching the internet the other day and everyone on here sounds

> very helpful and caring. I have also been having headaches and a

> slight sore throat for the past couple of months as well. I would

> like to thank everyone in advance for reading my post and letting

me

> get my feelings and worries out in this post.

>

> Thank You,

>

>

>

[Guest guest]

Hi a,

I am writing you back because your case sounds similar to mine as the

RA affects my right hand, wrist and elbow. I suggest you go to the book

store and look up books on R.A. and I would be happy to get back to you

with an exact title but I picked one up the other week.

The steroids and pain killers just stop the inflammation and pain.

Once the Rheumatologist puts you on a medication, it will eventually

replace the steroids once it's working.

I hope this helps a bit.

Lynn

[Guest guest]

,

I hope you feel better really soon. I switched from the Methotrexate to

Arava and what a difference it's made for me. I am also on 10mg of

Prednisone.

I am one of the few that had nasty side effects from the Methotrexate

including dry cough, nauseau and shortness of breath that would last 3-

4 days a week.

God has a plan for all of us. You must never give up.

Sincerely,

Lynn