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Hi Beth:

Welcome to this group of truly wonderful and amazing people. You have

come to the right place for lots of info., comfort, support, and lots of

caring.

I too, have RA. I never heard of it before I got diag. I am 69 years

old, and moved here to Florida from Cape Cod. The N.E. weather was

killing me, so here I am in sunny Florida.

It takes awhile to really digest what this beast of a disease is about.

I started on Methatrexate immediately, as well as Pred. I also take

Sulfasalazine, and Placquenil. They have worked wonderfully for me. I

have no bone or joint damage at all. I have a most wonderful Rheumy,

and she takes such good care of me. I have my blood tested monthly to

be sure all is well with me, especially my Liver.

I didn't want to take any more meds, but the reality is you have to take

something to slow the progression of this disease down. Also, we need

to protect our joints and bones from erosion. I did have to come to

terms with all these meds. I am glad that there are meds. out there to

really help us. So far, for 5 years, they have worked great on me.

It took me a long time to even get the courage to look up RA on the net.

I looked once, it scared the s--- out of me, so I didn't check it out

for a long time. Foolish girl I was. I just take one day at a time.

That is all I can handle. My flares are longer in between, and much

shorter in duration. My feet and ankles are the worst, the next is

hands, wrists, and thumbs. My RA has never been as awful as when I got

diagnosed. My meds. are really doing their job. I am thankful for

that.

Take care, and wishing you pain free days ahead.

Hugs,

Barbara

>

> Good morning Beth,

> My name is and I live in Virginia. I'm 31 and have had

RA for almost 10 years now. (diagnosed at age 22 while I was in college)

Due to the severe onset of my RA, I was put on methotrexate 3 weeks

after I was diagnosed. I also took a high dose of prednisone to get my

symptoms under control in the beginning. Remember, the side effects are

pretty rare -- they should still be taken seriously, but remember that

they are rare. When I was diagnosed, the only biologics that were

available were Enbrel (a shot) and Remicade (an IV). No one knew the

long term benefits or side effects (this was 1999) of these drugs. It

was a gamble to try them, but I was out of other options. I have been

taking Remicade (500mg every 6 weeks) for 9.5 years without a single

side effect. I also take ibuprofen, methotrexate, folic acid and

flexerill. Before RA, I had never had even a minor health problem. I

didn't want to take prescriptions for the rest of my life

> either (who would) but I have grown to accept it. Some people have

found symptomatic release through natural methods, but those attempts do

not stop the progression of RA. Give yourself some time to learn to

accept your diagnosis. You'll find a great group of people here. They

have helped me immensely.

>

> Take care,

> Steph in Virginia

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Hello All, I

have recently been diagnosed with early-stage RA (no " bony erosions "

yet, just inflammation, pain & loss of strength in my hands/wrists. ) I

am currently taking a 3-week course of prednisone to reduce the

inflammation. It is helping, but of course is not a long-term option. I

have been reading about the drugs used to treat RA and am revolted by

some of the side effects of these drugs which I probably will be

expected to take for the rest of my life (I am 42). I have told my

doctor that I am not at all keen on taking any drugs. I dislike taking

ibuprofen! Have any of you found a way to manage without drugs? Of

course, I am afraid that my bones/joints will deteriorate without drugs.

I am between a rock and a hard place, as I'm sure all of you were and

are. Thank you in advance for your advice.

>

>

>

> Beth Vogt (San Diego, CA)

>

>

>

>

>

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Sorry for the bad ride,no concern that weight and swelling is the norm,you might

get a different skin,that is bruise easy cut easy will not handle sun at

all.Many other problems hope you never get it . dx 05 pcru 600 Gleevec

________________________________

From: stirlingjenn <stirlings@...>

Sent: Sunday, March 15, 2009 5:59:38 PM

Subject: [ ] New to the Group

I was diagnosed Feb 4 '09 with chronic myeloid leukemia and have started taking

Gleevec. I also have cardiomyopathy and had Thyroid Cancer in 2005. The past

four years have been a bit of a challenge to say the least.

I have found that I have gained some weight since starting Gleevec.. Have others

found this? Also I have found I have some swelling under my eyes on certain

mornings that goes away once I get up and moving. Should I be concerned about

this?

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Hi,

Welcome to the group.

So far you have two of the most common side effects of Gleevec. Nothing to

be concerned about. Keep asking questions. You will find that we have all

been there.

Zavie

Zavie (age 70)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

e-mail: zmiller@...

Tel: 613-726-1117

Tel: 561-429-3309 in Florida

Fax: 309-296-0807

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of

stirlingjenn

Sent: March-15-09 7:00 PM

Subject: [ ] New to the Group

I was diagnosed Feb 4 '09 with chronic myeloid leukemia and have started

taking Gleevec. I also have cardiomyopathy and had Thyroid Cancer in 2005.

The past four years have been a bit of a challenge to say the least.

I have found that I have gained some weight since starting Gleevec.. Have

others found this? Also I have found I have some swelling under my eyes on

certain mornings that goes away once I get up and moving. Should I be

concerned about this?

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Zavie how did you post the exact second,I did!!!!

________________________________

From: Zavie <zmiller@...>

Sent: Sunday, March 15, 2009 9:12:48 PM

Subject: RE: [ ] New to the Group

Hi,

Welcome to the group.

So far you have two of the most common side effects of Gleevec. Nothing to

be concerned about. Keep asking questions. You will find that we have all

been there.

Zavie

Zavie (age 70)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

e-mail: zmillersympatico (DOT) ca

Tel: 613-726-1117

Tel: 561-429-3309 in Florida

Fax: 309-296-0807

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

stirlingjenn

Sent: March-15-09 7:00 PM

groups (DOT) com

Subject: [ ] New to the Group

I was diagnosed Feb 4 '09 with chronic myeloid leukemia and have started

taking Gleevec. I also have cardiomyopathy and had Thyroid Cancer in 2005.

The past four years have been a bit of a challenge to say the least.

I have found that I have gained some weight since starting Gleevec.. Have

others found this? Also I have found I have some swelling under my eyes on

certain mornings that goes away once I get up and moving. Should I be

concerned about this?

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Guest guest

Welcome to the group--

I was diagnosed in Dec. 03 and also have cardiomyopathy. I take medication for

both everyday and am doing just fine five years later. I do struggle with

fatigue, so be sure to get plenty of rest if you can.

I struggled with weight right away, but have now lost it again. ( I tended to

eat too many carbs, not realizing that I don't need a whole lot with the

Gleevec.) That has leveled out, now, as I have gotten used to the newness of it

all. It DOES get better.

There is a lot to think about, so try not to worry too much. The eye swelling

is also very common.

hang in there. This is a wonderful group for support and information. I have

found much help here.

in Minn

From: stirlings@...

Date: Sun, 15 Mar 2009 22:59:38 +0000

Subject: [ ] New to the Group

I was diagnosed Feb 4 '09 with chronic myeloid leukemia and have

started taking Gleevec. I also have cardiomyopathy and had Thyroid Cancer in

2005. The past four years have been a bit of a challenge to say the least.

I have found that I have gained some weight since starting Gleevec.. Have others

found this? Also I have found I have some swelling under my eyes on certain

mornings that goes away once I get up and moving. Should I be concerned about

this?

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Guest guest

It must have been the Ides of March.

Zavie

_____

From: [mailto: ] On Behalf Of

Shipley

Sent: March-15-09 10:17 PM

Subject: Re: [ ] New to the Group

Zavie how did you post the exact second,I did!!!!

________________________________

From: Zavie <zmillersympatico (DOT) <mailto:zmiller%40sympatico.ca> ca>

groups (DOT) <mailto:%40> com

Sent: Sunday, March 15, 2009 9:12:48 PM

Subject: RE: [ ] New to the Group

Hi,

Welcome to the group.

So far you have two of the most common side effects of Gleevec. Nothing to

be concerned about. Keep asking questions. You will find that we have all

been there.

Zavie

Zavie (age 70)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

e-mail: zmillersympatico (DOT) ca

Tel: 613-726-1117

Tel: 561-429-3309 in Florida

Fax: 309-296-0807

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

stirlingjenn

Sent: March-15-09 7:00 PM

groups (DOT) com

Subject: [ ] New to the Group

I was diagnosed Feb 4 '09 with chronic myeloid leukemia and have started

taking Gleevec. I also have cardiomyopathy and had Thyroid Cancer in 2005.

The past four years have been a bit of a challenge to say the least.

I have found that I have gained some weight since starting Gleevec.. Have

others found this? Also I have found I have some swelling under my eyes on

certain mornings that goes away once I get up and moving. Should I be

concerned about this?

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Welcome to the group.  I was diagnosed 8/2005 I used Gleevec for awhile no luck

then Sprycel same thing. So Aug 2005 I had a bone marrow transplant and I am

doing good.  I have a question for you.  Wednesday I had an ultrasound done on

my thyroid and my right side nodule has increased from 7cm to 9cm so they are

setting me up with a biopsy.  My last ultasound was done 6 mths ago.  So can you

explain about the thyroid cancer.  The doctor said not to worry but they would

give info until the test has been done and back.  I asked him what they would be

looking for and he said they would be looking at the cells.  I go 4/1 of all

days April fools day! Ha.  I also like to be informed just so I won't feel

clueless. Thanks    

________________________________

From: stirlingjenn <stirlings@...>

Sent: Sunday, March 15, 2009 6:59:38 PM

Subject: [ ] New to the Group

I was diagnosed Feb 4 '09 with chronic myeloid leukemia and have started taking

Gleevec. I also have cardiomyopathy and had Thyroid Cancer in 2005. The past

four years have been a bit of a challenge to say the least.

I have found that I have gained some weight since starting Gleevec.. Have others

found this? Also I have found I have some swelling under my eyes on certain

mornings that goes away once I get up and moving. Should I be concerned about

this?

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Guest guest

Barbara, thank you so much for the reply. I'm seeing the rheumatologist

tomorrow and have a page full of questions ready. One thing I'm

wondering is if aspirating the synovial fluid and testing it would

reveal any new information - this is one of my questions.

I can see from reading the emails that people really do care about each

other in this group. Although I'm secretly hoping that I really don't

have RA and that it is just something weird and temporary, if it truly

is RA, I would like to find a group here locally in San Diego where I

can talk with people.

> >

> > Good morning Beth,

> > My name is and I live in Virginia. I'm 31 and have had

> RA for almost 10 years now. (diagnosed at age 22 while I was in

college)

> Due to the severe onset of my RA, I was put on methotrexate 3 weeks

> after I was diagnosed. I also took a high dose of prednisone to get my

> symptoms under control in the beginning. Remember, the side effects

are

> pretty rare -- they should still be taken seriously, but remember that

> they are rare. When I was diagnosed, the only biologics that were

> available were Enbrel (a shot) and Remicade (an IV). No one knew the

> long term benefits or side effects (this was 1999) of these drugs. It

> was a gamble to try them, but I was out of other options. I have been

> taking Remicade (500mg every 6 weeks) for 9.5 years without a single

> side effect. I also take ibuprofen, methotrexate, folic acid and

> flexerill. Before RA, I had never had even a minor health problem. I

> didn't want to take prescriptions for the rest of my life

> > either (who would) but I have grown to accept it. Some people have

> found symptomatic release through natural methods, but those attempts

do

> not stop the progression of RA. Give yourself some time to learn to

> accept your diagnosis. You'll find a great group of people here. They

> have helped me immensely.

> >

> > Take care,

> > Steph in Virginia

> >

> > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Hello All, I

> have recently been diagnosed with early-stage RA (no " bony erosions "

> yet, just inflammation, pain & loss of strength in my hands/wrists. )

I

> am currently taking a 3-week course of prednisone to reduce the

> inflammation. It is helping, but of course is not a long-term option.

I

> have been reading about the drugs used to treat RA and am revolted by

> some of the side effects of these drugs which I probably will be

> expected to take for the rest of my life (I am 42). I have told my

> doctor that I am not at all keen on taking any drugs. I dislike taking

> ibuprofen! Have any of you found a way to manage without drugs? Of

> course, I am afraid that my bones/joints will deteriorate without

drugs.

> I am between a rock and a hard place, as I'm sure all of you were and

> are. Thank you in advance for your advice.

> >

> >

> >

> > Beth Vogt (San Diego, CA)

> >

> >

> >

> >

> >

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  • 3 weeks later...
Guest guest

Hi T.B.,

Welcome to our group, and sorry to read you are suffering in all that

pain.

I hope when you see your Rheumy they find out what is causing your pain,

and start you on some RX's to help you. You sure need a rest from all

that pain.

I wish you pain free days ahead.

Hugs,

Barbara

--- In , " tiggerbear1978 " <tiggerbear1978@...>

wrote:

>

> I am new to the group. I have not been diagnosed yet. I may have

either fibromyalgia or lupus. I have been having pain in my joints and

the doctors do not seem to know why. I have an appointment with an

rheumatologist on April 21st to find out what is going on. Yesterday I

woke up and could not use my right arm without crying. I just wish I

knew what was causing all the pain.

>

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Hi Tiggerbear

Welcome to the group. I am sorry you are in so much pain. Hopefully the Rhu

can help you. This is a great group and everyone is here to offer support.

You ask questions, offer advice, get a much needed laugh. or just vent. I

have Fibro and Rhu also several other fun diseases. Until you see the Dr. I

find that heat helps me, even a long hot shower or bath. I hope you feel

better soon.

Heidibug

On Sun, Apr 5, 2009 at 4:06 PM, tiggerbear1978 <tiggerbear1978@...>wrote:

> I am new to the group. I have not been diagnosed yet. I may have either

> fibromyalgia or lupus. I have been having pain in my joints and the doctors

> do not seem to know why. I have an appointment with an rheumatologist on

> April 21st to find out what is going on. Yesterday I woke up and could not

> use my right arm without crying. I just wish I knew what was causing all the

> pain.

>

>

>

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  • 1 month later...
Guest guest

it's not brand name it's dosage, formula and quality of the oils. For the

majority over a decade most here just used fish oils (Omega 3 and 6 primarily in

a certain ratio and the vitamin E is added for stability and because

supplementation of fish oil over time creates a vitamin e deficiency as per a

study done early 2000s)

Let me know if you have questions after reading this page from our

http://www.apraxia.org page

http://www.facebook.com/group.php?gid=115029735601#/topic.php?uid=115029735601 & t\

opic=7401

=====

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Hi Arch,

You can reach Dr. Goldberg at (818) 343-1010, or you can email the

office at office@..., you can speak to Laurie his office

manager or .net.

His office is in Tarzana, California.

Good luck,

Argie

On May 17, 2009, at 8:12 PM, adhurka wrote:

>

>

> Hello all,

>

> I am brand new here.. I don't know much about or Dr.Goldberg. I

> have a 9 year old son- we have tried tons of things and he has made

> progress but still a long way to go. I strongly feel that my kid is

> a viral kid and so I just started researching into this group. Can

> someone please tell me where Dr.Goldberg is based and how long does

> it take to get an appt with him. How ofetn do we have to see him?

> What kind of a treatement plan does he have?

>

> Thank you so much! I really appreciate your replies..

>

> Arch

>

>

>

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Guest guest

I would call Dr. Goldburg's office too.  

They will send you a new patient paper work to fill out.  I sent my paper work

to them around  October and they called me to set up an appoinment date about a

month later.

My son was seen in January.  They could have seen me in December, but that

was not a good time for me.  You will need all medical records from birth to

now, so you may want to get those together.  Also, inquire about a neuro

spec. It was well worth the time and money.  It is my understanding that

got to go ahead and begin the meds based on that test otherwise I would have to

wait until blood test results were in and my next phone consult.   

I would also start the DO's and DONT'S Diet found on the website, just to see

what improvements are made.  I could tell a big difference with just the diet

alone.

 

Thanks,

 

 

Freda    

 

>

>

> Hello all,

>

> I am brand new here.. I don't know much about or Dr.Goldberg. I

> have a 9 year old son- we have tried tons of things and he has made

> progress but still a long way to go. I strongly feel that my kid is

> a viral kid and so I just started researching into this group. Can

> someone please tell me where Dr.Goldberg is based and how long does

> it take to get an appt with him. How ofetn do we have to see him?

> What kind of a treatement plan does he have?

>

> Thank you so much! I really appreciate your replies..

>

> Arch

>

>

>

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Guest guest

Freda,

Thank you so much for your reply!

What kind of tests do we need to get done(or rather helpful to have) before

the first appt?

Someone mentioned SPECT scan- is that different from Neuro spec? Also, can

we did

in out home town? How much does that cost and what does it involve? What

other stuff do we need to do

before the first appt?

How much does he charge for the consult? Are there any hidden fees?

Thanks again!

Arch

Re: New to the group

I would call Dr. Goldburg's office too. They will send you a new patient

paper work to fill out.  I sent my paper work to them around  October and

they called me to set up an appoinment date about a month later.

My son was seen in January.  They could have seen me in December, but that

was not a good time for me.  You will need all medical records from birth to

now, so you may want to get those together.  Also, inquire about a neuro

spec. It was well worth the time and money.  It is my understanding that

got to go ahead and begin the meds based on that test otherwise I

would have to wait until blood test results were in and my next phone

consult. I would also start the DO's and DONT'S Diet found on the website,

just to see what improvements are made.  I could tell a big difference with

just the diet alone.

 

Thanks,

 

 

Freda    

 

>

>

> Hello all,

>

> I am brand new here.. I don't know much about or Dr.Goldberg. I

> have a 9 year old son- we have tried tons of things and he has made

> progress but still a long way to go. I strongly feel that my kid is a

> viral kid and so I just started researching into this group. Can

> someone please tell me where Dr.Goldberg is based and how long does it

> take to get an appt with him. How ofetn do we have to see him?

> What kind of a treatement plan does he have?

>

> Thank you so much! I really appreciate your replies..

>

> Arch

>

>

>

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Guest guest

Welcome to the group April!

I'm sorry for your diagnosis, you have found a nice place. I have been here for

quite awhile, and this is my RA family for life.

We all deal with a lot, and it just feels so good to be able to share, and we

all know what your going through. So, just know your not alone,......

Glad your here,

Tawny

>

> Hi all! I'm April and I just joined yesterday. I was diagnosed with

sero-negative R.A with lupus like tendencies almost 6 years ago. This year I had

fibromyalgia and Sjogrens added to the list. They think those two might have

more to do with the lupus like tendencies and I don't have to worry about having

lupus anymore. So that was a definate plus. I am 34 and live in Tacoma, WA. I

have a great Rheumy here in Tacoma and have actually been pretty lucky in that

respect. Only one in the many have I not liked. Wish I could say the same for my

primary doctors, lol, but it is what it is. I take many pills and my once a week

enbrel injection.

> I am so glad to find a group where I feel comfortable venting if I need or

just reading what others write and are going through. I love my friends and

family and while they are generally very supportive it's just not the same as

knowing others who go through the same sorts of things.

>

> April

>

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  • 2 months later...
Guest guest

Stress is really bad, it only exacerbates how you feel. Not getting enough

restfull sleep also adds to how bad you feel, it makes a huge difference. Since

you are already on the meds you know what thats like. Eventually you will have

to give some serious thought to filling for disability understanding that you

are not giving up, but accepting reality. I promise you your kids would rather

have a disabled Dad than no Dad.

Stan,

Seattle, Hot!

Sent: Saturday, July 25, 2009 7:22:23 PM GMT -08:00 US/Canada Pacific

Subject: [ ] New to the group

Hello

Having Arthritis continue to get worse I am wondering how anyone else deals with

the pain and immobility while trying to work full time. Quick history, 1995 -

Ulerative Coitus, 1997-Autoimmune Hepatitis, 1999 - Schlerosing Colangitus, 2006

- Iritus. as the years have gone one, my joints have become worse and worse.

January 2008 started Remicade 250mg every 8 weeks, worked for me for about 5 4

weeks, increased to 6 weeks. Then 500mg every 6 weeks, I would feel good for

three weeks, then three weeks of misery. Now we are trying 750mg have not come

up with an interval yet, waiting to see how long I go. At times working becomes

unbearable, if I sit to long I can not get up, then if I am up to long I have to

sit down, very hard to concentrate, are pain pills an accepted solution for some

during those times. Looking for answers I guess. Takes a long time to try and

balance out the meds to be most effective. Hope to hear for the more experienced

I guess. I tend to just keep going,  I just get slower and slower.....  I am a

40 year old male with two teenagers, I guess stress does not help ether.

I should proof read this but I am to tired.

Mark

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Guest guest

Hi Mark and welcome to the group. You've certainly had your share of conditions

in addition to the RA. My best advice to you would be to call your Rheumy when

you feel the Remicade is on the downside. Especially if its half-way through the

treatment cycle. Are you taking any other RA meds? Pain management varies from

person to person, but IMHO, if you have access to pain pills (legally of course)

and you need them to get through the day, take them! It does take a long time to

find the right combo of meds and its different for every person.

Stress does not help things. I've been there/done that/doing it for the last

time with the teenage girls. My baby is 16 and I am blessed that she seems to be

an easy-going young lady. Best of luck to you. Keep us posted. We

care.....Doreen :)

PS > Proof-reading is not a requirement..... :)

Hello

Having Arthritis continue to get worse I am wondering how anyone else deals

with the pain and immobility while trying to work full time. Quick history, 1995

- Ulerative Coitus, 1997-Autoimmune Hepatitis, 1999 - Schlerosing Colangitus,

2006 - Iritus. as the years have gone one, my joints have become worse and

worse. January 2008 started Remicade 250mg every 8 weeks, worked for me for

about 5 4 weeks, increased to 6 weeks. Then 500mg every 6 weeks, I would feel

good for three weeks, then three weeks of misery. Now we are trying 750mg have

not come up with an interval yet, waiting to see how long I go. At times working

becomes unbearable, if I sit to long I can not get up, then if I am up to long I

have to sit down, very hard to concentrate, are pain pills an accepted solution

for some during those times. Looking for answers I guess. Takes a long time to

try and balance out the meds to be most effective. Hope to hear for the more

experienced I guess. I tend to just keep going, I just get slower and

slower..... I am a 40 year old male with two teenagers, I guess stress does not

help ether.

I should proof read this but I am to tired.

Mark

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Guest guest

Hi Mark: I want to welcome you to our group. You have come to the

right place for support, help, and lots of people who know lots about

these diseases we have.

I have had RA for 6 years. I see you have had a lot of serious things

to deal with. I had Ulcerative Colitis for 15 years of hell, and

finally, I don't suffer with it any more. I also had Iritis in my right

eye, which I thought I was going to lose. Thank God I didn't. So I

know what you have had to deal with.

It must be very hard to work while having issues with your diseases. I

am retired, and I know if I got RA before, there is no way I could have

worked. I could not function well when my RA reared its ugly head. I

moved to Florida from Cape Cod, as I could not take the N.E. weather

anymore. I was almost in a wheel chair when I left for here. The

weather here is so much better for me.

I am sure a lot of our members will be able to help you, and answer any

of your questions. You can vent, rant, rave, etc. We are all here for

you.

Again, welcome to our wonderful supportive and caring group.

Hugs,

Barbara

>

> Hello

>

> Having Arthritis continue to get worse I am wondering how anyone else

deals with the pain and immobility while trying to work full time. Quick

history, 1995 - Ulerative Coitus, 1997-Autoimmune Hepatitis, 1999 -

Schlerosing Colangitus, 2006 - Iritus. as the years have gone one, my

joints have become worse and worse. January 2008 started Remicade 250mg

every 8 weeks, worked for me for about 5 4 weeks, increased to 6 weeks.

Then 500mg every 6 weeks, I would feel good for three weeks, then three

weeks of misery. Now we are trying 750mg have not come up with an

interval yet, waiting to see how long I go. At times working becomes

unbearable, if I sit to long I can not get up, then if I am up to long I

have to sit down, very hard to concentrate, are pain pills an accepted

solution for some during those times. Looking for answers I guess. Takes

a long time to try and balance out the meds to be most effective. Hope

to hear for the more experienced I guess. I tend to just keep going, I

just get slower and slower..... I am a 40 year old male with two

teenagers, I guess stress does not help ether.

>

> I should proof read this but I am to tired.

>

> Mark

>

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Guest guest

Hi Mark: I want to welcome you to our group. You have come to the

right place for support, help, and lots of people who know lots about

these diseases we have.

I have had RA for 6 years. I see you have had a lot of serious things

to deal with. I had Ulcerative Colitis for 15 years of hell, and

finally, I don't suffer with it any more. I also had Iritis in my right

eye, which I thought I was going to lose. Thank God I didn't. So I

know what you have had to deal with.

It must be very hard to work while having issues with your diseases. I

am retired, and I know if I got RA before, there is no way I could have

worked. I could not function well when my RA reared its ugly head. I

moved to Florida from Cape Cod, as I could not take the N.E. weather

anymore. I was almost in a wheel chair when I left for here. The

weather here is so much better for me.

I am sure a lot of our members will be able to help you, and answer any

of your questions. You can vent, rant, rave, etc. We are all here for

you.

Again, welcome to our wonderful supportive and caring group.

Hugs,

Barbara

>

> Hello

>

> Having Arthritis continue to get worse I am wondering how anyone else

deals with the pain and immobility while trying to work full time. Quick

history, 1995 - Ulerative Coitus, 1997-Autoimmune Hepatitis, 1999 -

Schlerosing Colangitus, 2006 - Iritus. as the years have gone one, my

joints have become worse and worse. January 2008 started Remicade 250mg

every 8 weeks, worked for me for about 5 4 weeks, increased to 6 weeks.

Then 500mg every 6 weeks, I would feel good for three weeks, then three

weeks of misery. Now we are trying 750mg have not come up with an

interval yet, waiting to see how long I go. At times working becomes

unbearable, if I sit to long I can not get up, then if I am up to long I

have to sit down, very hard to concentrate, are pain pills an accepted

solution for some during those times. Looking for answers I guess. Takes

a long time to try and balance out the meds to be most effective. Hope

to hear for the more experienced I guess. I tend to just keep going, I

just get slower and slower..... I am a 40 year old male with two

teenagers, I guess stress does not help ether.

>

> I should proof read this but I am to tired.

>

> Mark

>

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Guest guest

Welcome Mark,

Wow, you have been through the ringer!! I'm sorry everything has just

piled up on you. I know you need a much needed break from it all. Have

you thought about trying another biologic med? I'm on humira

w/methotrexate, and I'm doing fairly well on it. It seems with the

combo of those two meds, it works a lot better. I also have fibro, and

neuropathy pain, and I started on cymbalta recently, and its a dream for

me. It also helps depression, and its totally gone.

I am on SSA, have been on it since 39, I am now 46, and I sure wasn't

ready to stop working. My body just gave out on me. It's very hard on

someone to work full time, with severe RA.

Some people find, " work at home, " jobs. I'm the same way, I can't stay

in one position for very long.

I am on Lortab for the pain, and I do take them when I need them. I've

been feeling pretty good the last few weeks. I did work in the yard a

little yesterday, and I'm feeling the pain today. It's life though, and

we just make the most of it.

I know its hard raising teenagers when you have chronic health problems.

I have a daughter 14, and its hard to keep up. Just hang in there, I'm

sure they understand.

This is a wonderful group, so I hope you stay awhile. I hope you find

some answers, and know were always here for support and friendship,

Tawny

>

> Hello

>

> Having Arthritis continue to get worse I am wondering how anyone else

deals with the pain and immobility while trying to work full time. Quick

history, 1995 - Ulerative Coitus, 1997-Autoimmune Hepatitis, 1999 -

Schlerosing Colangitus, 2006 - Iritus. as the years have gone one, my

joints have become worse and worse. January 2008 started Remicade 250mg

every 8 weeks, worked for me for about 5 4 weeks, increased to 6 weeks.

Then 500mg every 6 weeks, I would feel good for three weeks, then three

weeks of misery. Now we are trying 750mg have not come up with an

interval yet, waiting to see how long I go. At times working becomes

unbearable, if I sit to long I can not get up, then if I am up to long I

have to sit down, very hard to concentrate, are pain pills an accepted

solution for some during those times. Looking for answers I guess. Takes

a long time to try and balance out the meds to be most effective. Hope

to hear for the more experienced I guess. I tend to just keep going, I

just get slower and slower..... I am a 40 year old male with two

teenagers, I guess stress does not help ether.

>

> I should proof read this but I am to tired.

>

> Mark

>

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  • 4 weeks later...

this was dejavu for me. my daughter ella is 6 months and will be fitted toda for

her band she gets it in 2 weeks and will also have to wear it for 3 to 4 months.

I can't offer any insight but can only let you know there are others out there

like you.

>

> i am new to this group...my daughter Emma will be getting her band in 2

weeks...any advice for me/us? i am very nervous. she is 6 months old and i am

told she will need it for 3-4 months. thanks!

>

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Hi there! My daughter is also 6 months old and got her DOC Band on Monday. I was so nervous about it that I even broke out in hives! It was completely painless. She has done great. They told me the appointment would take an hour to an hour and a half and we were there only 30 minutes. They only shaved one area down. Good luck. You will be pleasantly surprised how well your baby will adjust and how quickly!

From: hibbs82879@... <hibbs82879@...>Subject: new to the groupPlagiocephaly Date: Wednesday, August 19, 2009, 10:10 PM

i am new to this group...my daughter Emma will be getting her band in 2 weeks...any advice for me/us? i am very nervous. she is 6 months old and i am told she will need it for 3-4 months. thanks!

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--

Hi, my son is almost six months old and he got his doc band on Monday and he is

not adjusting well. He cries out in the middle of the night while he is

sleeping. My son also has tort. and he use to sleep to the left all the time,

now that he got the helmet he sleeps to his head to the right and cries. Any

suggestions.

- In Plagiocephaly , McLaughlin <karenmclaughlin29@...>

wrote:

>

> Hi there!  My daughter is also 6 months old and got her DOC Band on Monday.  I

was so nervous about it that I even broke out in hives!  It was completely

painless.  She has done great.  They told me the appointment would take an hour

to an hour and a half and we were there only 30 minutes.  They only shaved one

area down.  Good luck.  You will be pleasantly surprised how well your baby will

adjust and how quickly!

>  

>

>

>

>

>

> From: hibbs82879@... <hibbs82879@...>

> Subject: new to the group

> Plagiocephaly

> Date: Wednesday, August 19, 2009, 10:10 PM

>

>

>  

>

>

>

> i am new to this group...my daughter Emma will be getting her band in 2

weeks...any advice for me/us? i am very nervous. she is 6 months old and i am

told she will need it for 3-4 months. thanks!

>

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thanks!!! i amsure i will have more to say/ask when she gets it. what do you

mean shaved one area down? on the band?

thanks,

karen

>

>

> From: hibbs82879@... <hibbs82879@...>

> Subject: new to the group

> Plagiocephaly

> Date: Wednesday, August 19, 2009, 10:10 PM

>

>

>  

>

>

>

> i am new to this group...my daughter Emma will be getting her band in 2

weeks...any advice for me/us? i am very nervous. she is 6 months old and i am

told she will need it for 3-4 months. thanks!

>

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