RA

[Guest guest]

Hi Everyone,

Is there anyone on this list using LDN for RA? I would love to gather some

into for someone with RA.

Thanks

Aletha

[Guest guest]

Hi! Both MS and RA not active acording to doc who

recognized the deformity of the fingers of my right

hand. My maternal grandfather's fingers turned at

right angles to his poor hands. I consider MS the

genetic consequence to this autoimmune disease. Best.

Shirley Lotz

--- Aletha Wittmann <Aletha@...> wrote:

> Hi Everyone,

>

> Is there anyone on this list using LDN for RA? I

> would love to gather some

> into for someone with RA.

>

> Thanks

> Aletha

>

>

__________________________________________________

[Guest guest]

My Mom has RA. She is on LDN for one month thus far.

She is also on low dose Minocin M/W/F per a separate

protocol. The use of LDN is meant to up modulate her

immune system as well as to help with urine/bowel

controls and fatique. She also has many MS like

symptoms: shooting pains and some tremor. I would

like to know more people treating RA with LDN as well.

Regards, Sheng Lin

--- Aletha Wittmann <Aletha@...> wrote:

> Hi Everyone,

>

> Is there anyone on this list using LDN for RA? I

> would love to gather some

> into for someone with RA.

>

> Thanks

> Aletha

>

>

__________________________________________________

[Guest guest]

Hi Shirley,

That is great news. As far as improvements: what have you noticed in

regards to the RA and the MS?

Thanks

Aletha

Re: [low dose naltrexone] RA

> Hi! Both MS and RA not active acording to doc who

> recognized the deformity of the fingers of my right

> hand. My maternal grandfather's fingers turned at

> right angles to his poor hands. I consider MS the

> genetic consequence to this autoimmune disease. Best.

> Shirley Lotz

>

> --- Aletha Wittmann <Aletha@...> wrote:

>

>> Hi Everyone,

>>

>> Is there anyone on this list using LDN for RA? I

>> would love to gather some

>> into for someone with RA.

>>

>> Thanks

>> Aletha

>>

>>

>

>

> __________________________________________________

>

[Guest guest]

Dear Trish~

I too am alone and single and have learned that it helps to interact with

others like you're doing here and don't try to go it alone. From what I've

read there's more people helped with some of the medications than hurt.

It's just up to each of us to monitor our responses to the medications, make

our doctors aware of our " issues " with our illness and our meds, and make

adjustments accordingly. Sometimes it will mean trying different meds and

sometimes it will mean trying different doctors.

I approach things with a " it is what it is " attitude and try to make the

best of it. You'll find a lot of great ideas about how to cope on this site

and a lot of support on the bad days.

Don't let RA or the fear of meds control you. Try to be strong and take it

on! *smile*

IAN

[ ] RA

> Hello Everyone

> I have just been diagnosed with RA and bo am I scared to take any pf

> the medications after eradinga bout them/

> I am looking for some support as I am single and alone

> Umm not sure what else to write here

> Trish

>

>

>

>

>

>

>

>

>

[Guest guest]

In a message dated 4/23/2006 9:38:22 AM Central Standard Time,

sleepysea66@... writes:

Hello Everyone

I have just been diagnosed with RA and bo am I scared to take any pf

the medications after eradinga bout them/

I am looking for some support as I am single and alone

Umm not sure what else to write here

Trish

welcome Trish! You definately have come to the right place for suooprt and

information! Our moderators and a go above and beyond when lookfing

for answers to our questions.... thanks gals! At first you will have all kinds

of emotions about this, and that is normal. But know you arent alone in

this! Are you taking any medication? HUGS talk soon.

http://www1.myspace.com/julz2kidz

[Guest guest]

Welcome Trish,

Being diagnosed with RA is very overwhelming. This is a great place

to be, so glad your here. What type of meds are you starting? It's

very important to treat the RA with meds to stop the progression of

the disease. If you need to chat, you can email me anytime, Tawny

--- In , " sleepysea66 " <sleepysea66@...>

wrote:

>

> Hello Everyone

> I have just been diagnosed with RA and bo am I scared to take any pf

> the medications after eradinga bout them/

> I am looking for some support as I am single and alone

> Umm not sure what else to write here

> Trish

>

[Guest guest]

Hello Ian

Thank you for your Email

I have been Prednisone and now the Doctor wants to put me on Methotrexate

I have read up on this stuff and they dont want me on Prednisone

My fear comes from past reactiosn like panic attacks to other drugs ive had

man this is so hard i keep active and stuff

Ian would you please send me email to sleepysea66@...

Kindest regards

Trish

Ian <ianchicago@...> wrote:

Dear Trish~

I too am alone and single and have learned that it helps to interact with

others like you're doing here and don't try to go it alone. From what I've

read there's more people helped with some of the medications than hurt.

It's just up to each of us to monitor our responses to the medications, make

our doctors aware of our " issues " with our illness and our meds, and make

adjustments accordingly. Sometimes it will mean trying different meds and

sometimes it will mean trying different doctors.

I approach things with a " it is what it is " attitude and try to make the

best of it. You'll find a lot of great ideas about how to cope on this site

and a lot of support on the bad days.

Don't let RA or the fear of meds control you. Try to be strong and take it

on! *smile*

IAN

[ ] RA

> Hello Everyone

> I have just been diagnosed with RA and bo am I scared to take any pf

> the medications after eradinga bout them/

> I am looking for some support as I am single and alone

> Umm not sure what else to write here

> Trish

>

>

>

>

>

>

>

>

>

[Guest guest]

Hello Tawny

Thanks for the message

I dont get online much sos orry if I have taken so long replying.

I'm on Prednisone 5 mg

I have had panic attakcs in reaction to things like Zoloft and Prozac and now

have the biggest fear of drugs

It took 2 months for me to evens tart the Prednisone and i found a new

Rheumatologist and he wants me tos tart taking methotrxate and folic acid

Ive only just overcoem my fear and trust the Prednisone it does work but they

are worried about long term effects of it

I live in Australia inBrisbane and I dont quite understand the Health

insurance in USA its so different ot here but I wonder a cure hasnt been found

because of the money drug companies make from others miseries

I ams o scared Tawny

Hugs

Trish

tdianaok <tdianaok@...> wrote:

Welcome Trish,

Being diagnosed with RA is very overwhelming. This is a great place

to be, so glad your here. What type of meds are you starting? It's

very important to treat the RA with meds to stop the progression of

the disease. If you need to chat, you can email me anytime, Tawny

--- In , " sleepysea66 " <sleepysea66@...>

wrote:

>

> Hello Everyone

> I have just been diagnosed with RA and bo am I scared to take any pf

> the medications after eradinga bout them/

> I am looking for some support as I am single and alone

> Umm not sure what else to write here

> Trish

>

[Guest guest]

Hi there,

I am taking Enbrel (plus others)and I would not be taking it if I read

too much about the possible side effects.

But without the treatments I don't dare think of how I would be

feeling. I understand there is no cure

for RA but the new biologics sure do slow down the process. Don't be

scared it will only cause stress and

then a flare up. Myself speaking don't believe in RA getting better by

what you eat......This is a disease and needs treatments. Foods won't

fix any other disease either. I do believe in eating healthy to keep

the girlish figure...HEhEHEHE oh hold on, I lost that with much

prednisone......

Just keep smiling and find a good doctor.

pamelamary9 wrote:

> I am 51, and was diagnosed with RA. It wasn't a surprize. Iam afraid

> of the disease and afraid of the meds. So, I am not taking anything

> now. It happened very fast. It seems within a 2 to 3 year span, my

> hands totally changed. Sore, swollen, deformed, and me, well,

> devastated. Pain is constant. My feet hurt in the morning. My entire

> body upon waking in the morning feels like rigamortis has set in.

> Funny word to use maybe, but the truth. I am trying, (and I

> emphasize " trying " ) to cleanse my body of impurities through juicing,

> lots of friuts and veggies (organic of course)vitamin C with

> glucosamine. I hope that through healthier living, I can make all this

> go away! But obviously, writing this post shows that I have doubts.

> Can someone please tell me about the meds involved? I have heard awful

> things about them, but don't know what is true and what's not. In

> short, I need help.

> Thank you

> Pam

>

>

>

>

>

>

>

>

>

>

[Guest guest]

The cheek pain can be from inflammation of the 3rd facial nerve, which is

probably why the jaw hurts also. Even though you have RA, the inflammation is

not limited to joints, it can be nerves and muscle also.l

HTH

Hugs

[Guest guest]

Hi Bonnie welcome! I am also new to the group I have been dx for 3 months.

Marsha

piggy2245 <elvis98542@...> wrote:

Hi, my name is Bonnie and I also suffer from RA plus other medical

problems. I thought getting into a support group would help.

[Guest guest]

I am 30 years old and have been diagnosed with RA one year ago. It

has been horrible. I have no energy and am sore all of the time. I am

taking methotrexate and prednisone. This just does not seem to be

working. I have a family with three small children. I really am

desperate to find something that works. Any advise would be great!

[Guest guest]

I'm not a dr and I'm pretty new to RA but it happens that I had this

convo with my rheumy just today.

MTX seems to be working pretty well with me so far but I asked him

about biologics. His response was that if I plateaued on the mtx and

was not getting any better at any point or got worse, then he would

start me on biologics (embrel, humira, etc)

Maybe you should talk to your doctor about introducing biologics into

the mix?

Good luck!

Kim

>

> I am 30 years old and have been diagnosed with RA one year ago. It

> has been horrible. I have no energy and am sore all of the time. I am

> taking methotrexate and prednisone. This just does not seem to be

> working. I have a family with three small children. I really am

> desperate to find something that works. Any advise would be great!

>

[Guest guest]

I'm sure you've told your doctor how much pain you're in. It seems like after a

year, he should try something else. I have never been prescribed Prednisone, as

my doctor only does that as a last resort. I have been on Methotrexate since

being diagnosed, in conjunction with Plaquenil, and folic acid. I was also on

Embrel for awhile, and now Remicade. I guess my suggestion is, if he isn't

readily trying something else, bring it up to him and tell him that the current

course of meds isn't doing the trick and you want to know what your options are.

I have found that my doctor is always open to discussion on all matters

concerning my illnesses.

I will say this though, none of the drugs have done anything to ease the

exhaustion/lack of energy. Part of that is due to the fact that I just don't

sleep. He has prescribed Ambien, but I don't want to take it every night.

Amy

[ ] Re: RA

I am 30 years old and have been diagnosed with RA one year ago. It

has been horrible. I have no energy and am sore all of the time. I am

taking methotrexate and prednisone. This just does not seem to be

working. I have a family with three small children. I really am

desperate to find something that works. Any advise would be great!

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

I was diagnosed in may 06, and mtx did not work for me either was on predisone

as well. Finally in Dec 06 I was put on enbrel which turned everything around.

Due to insurance issues was off of it from the end of Jan 07 til recently a

month ago. I am doing well on it. It is the best thing I can do for myself

once a week.

You need to talk to your rheumy tell him/her that what you are taking is not

working for you and have him/her look into other drugs that will help you.

-------------- Original message --------------

From: " cloudcoral " <cloudcoral@...>

I am 30 years old and have been diagnosed with RA one year ago. It

has been horrible. I have no energy and am sore all of the time. I am

taking methotrexate and prednisone. This just does not seem to be

working. I have a family with three small children. I really am

desperate to find something that works. Any advise would be great!

[Guest guest]

>

> I am 30 years old and have been diagnosed with RA one year ago. It

> has been horrible. I have no energy and am sore all of the time. I

am

> taking methotrexate and prednisone. This just does not seem to be

> working. I have a family with three small children. I really am

> desperate to find something that works. Any advise would be great!

>

Hello. Just thought I'd suggest trying REMICAIDE infusions. You use it

with Methotrexate. Admin. through IV. every 8 weeks. This is what

turned my life around. I have 2 kids and wasn't able to care for them

let alone dress myself. After 2 years of treatments I am 100% BETTER

AND ON LOW DOSE OF PREDISONE AND METHOTREATE AND HAVE BEEN OFF THE

REMICAIDE for over a year. This drug gave me and my family my life

back!!

[Guest guest]

>

> I am 30 years old and have been diagnosed with RA one year ago. It

> has been horrible. I have no energy and am sore all of the time. I

am

> taking methotrexate and prednisone. This just does not seem to be

> working. I have a family with three small children. I really am

> desperate to find something that works. Any advise would be great!

>

[Guest guest]

Hi...

I started out around your age, a year or 2 older. I aslo had a small

child close to 2 at the time. I was in between jobs so the care I got

was not as aggressive as the one you have. That was close to 13 years

ago. So I understand. We all understand. I have found a couple of

sites below that talks about RA and the treatment options. There are

many site out there on the subject. But these are a couple I wish I

hadknown about and so if you get the chance take a look at some of the

options. I think the johns-hopkins one lists types of meds and other

treatments. Food allergies can aggravate RA also, stress will cause

flares..being upset, arguments, try to keep an even mood and not get

stressed out. You need to stay hydrated, get enough rest, warm baths

sometimes help, get exercise ... aquatic RA exercises are best and

easiest on the joints...controlling the inflammation all at the same

time. I noticed a lot of times when I got the fever and chills I had

allowed myself to go without enough water for my weight. Hang in

there.

http://www.hopkins-arthritis.org/arthritis-info/rheumatoid-

arthritis/rheum_treat.html#new#new

http://www.insidera.com/treatment/index.jsp

" Treatments

by Alan K. Matsumoto, M.D. , Joan Bathon, M.D. and Clifton O. Bingham

III, M.D.

While we strive to remain up to date regarding therapies for rheumatoid

arthritis, you may find additional details or more current information

within our " Hot News " section and also within the " Ask the Expert "

Section.

Rheumatoid arthritis is a chronic disorder for which there is no known

cure. Fortunately in the last few years, a shift in strategy toward the

earlier institution of disease modifying drugs and the availability of

new classes of medications have greatly improved the outcomes that can

be expected by most patients. The goal of treatment now aims toward

achieving the lowest possible level of arthritis disease activity and

remission if possible, the minimization of joint damage, and enhancing

physical function and quality of life. The optimal treatment of RA

requires a comprehensive program that combines medical, social, and

emotional support for the patient. It is essential that the patient and

the patient's family be educated about the nature and course of the

disease. Strategies are all aimed at reducing pain and discomfort,

preventing deformities and loss of joint function, and maintaining a

productive and active life. Inflammation must be suppressed and

mechanical and structural abnormalities corrected or compensated by

assistive devices. Treatment options include medications, reduction of

joint stress, physical and occupational therapy, and surgical

intervention.

Pharmacological Strategies

NSAIDs

Corticosteroids

Methotrexate (Rheumatrex®, Trexall®)

Hydroxychloroquine (Plaquenil ®)

Sulfasalazine (Azulfidine®)

Leflunomide (Arava®)

Tumor Necrosis Factor Inhibitors-- etanercept (Enbrel®, adalimumab

(Humira ®), and infliximab (Remicade®)

T-cell Costimulatory Blocking Agents—abatacept (Orencia®)

B cell Depleting Agents—rituximab (Rituxan®)

Interleukin-1 (IL-1) Receptor Antagonist Therapy—anakinra (Kineret®)

Intramuscular Gold

Other Immunomodulatory and Cytotoxic agents-- azathioprine (Imuran®),

cyclophosphamide, and cyclosporine A(Neoral®, Sandimmune®)

Treatment during pregnancy

Reduction of joint stress

Surgical approaches ... "

http://www.hopkins-arthritis.org/arthritis-info/rheumatoid-

arthritis/rheum_treat.html#new#new

blessings,

Ebony -- RA 13 years, recent sicca syndrome, OA of hip joints, etc.

presently in Georgia

[Guest guest]

Hello!

I am 35 and have FMS/MPS/CFs and RA. It is a very

difficult disease and what works for some will not

work for others as our systems and how we react to

pain differ so much. Have you ever been on any DMARDS

such as Plaquenil? I currently take Plaquenil and

Sulfasalazine. The sulfasalazine is supposed to try

to help my immune system from attacking itself. I can

honestly say I didnt think it was helping at all

because I was in so much pain still. Yet I had to

recently stop it for 3 months due to severe bronchitis

and I was in total agony and could not walk at all

(normally I have this issue but I can walk with my

cane) I couldn't even do that! New symptoms and pain

were in areas that it hadnt really been before. Now

as much as I hate the Sulfasalazine, now that I am

back on it I have noticed an improvement. I start a

more aggressive drug in a few months. There are many

on the board that take biologics so I'm sure they can

give you some great feedback as well! Just know that

you are not alone!

Gentle Hugs

stephanie

--- cloudcoral <cloudcoral@...> wrote:

> I am 30 years old and have been diagnosed with RA

> one year ago. It

> has been horrible. I have no energy and am sore all

> of the time. I am

> taking methotrexate and prednisone. This just does

> not seem to be

> working. I have a family with three small children.

> I really am

> desperate to find something that works. Any advise

> would be great!

>

>

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

Hi ,

Welcome to the group. Are you taking Methotrexate, Humara, or Enbrel?

Heidi M

On Feb 3, 2008 11:50 PM, brenda rondy <rondybrenda@...> wrote:

> hi my name is brenda i have ra for 20yrs had 1 rheumy for about 15 yrs

> was lucky to find another 1 right away he has tried several things some have

> worked for a ehile some havent wright now we are waiting for an infection to

> clear up. talk to other people about ra i think groups are good but if you

> feel you want to talk one on one feel free to email me brenda

>

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

> Be a better friend, newshound, and know-it-all with Mobile. Try it

> now.

>

>

[Guest guest]

>

> > hi my name is brenda i have ra for 20yrs had 1 rheumy for about

15 yrs

> > was lucky to find another 1 right away he has tried several

things some have

> > worked for a ehile some havent wright now we are waiting for an

infection to

> > clear up. talk to other people about ra i think groups are good

but if you

> > feel you want to talk one on one feel free to email me brenda

> >

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

> > Be a better friend, newshound, and know-it-all with

Mobile. Try it

> > now.

> >

> hedi we have tried several things rituxin was last made me sick

have had an infection for a year sosn as this clears up he wants to

try metxtrate we will ee if it works when i ble to take it which i

hope will be soon. talk to you later brenda

> >

> >

> >

>

>

>

[Guest guest]

Hi gang, I am 50 and I have had RA for 33 years, I stay active on a

bicycle. I think Embrel is the best medicine going for RA.

Cheers, Mike