Re: seeking friends

June 5, 2004

> Howdy:

>

> My name is Dave Francis. I am a California native (one of the few

> left!!)

> I recently was diagnosed as having rheumatoid arthritis .. and am

> experiencing hesitancy in going on the DMARD's that the

> rheumatologists are suggesting going onto, instead of the

prednisone

> and pain killer maintenance that I am now on.

> Anyone else out there facing this same problem?

>

> Dave F.

HI DAVE,

MY NAME IS CINDI HEIN AND FORGIVE ME FOR WRITING IN ALL CAPS. IT IS

SO MUCH EASIER WITH MY RA. I HAVE A FEW QUESTIONS FIRST, HOW OLD

ARE YOU AND HOW LONG HAVE YOU HAD RA, AND HOW MANY REUMOTOLOGISTS

HAVE YOU SEEN ?

I AM BEING WEANED OFF PREDNISONE BECAUSE I HAVE BEEN ON IT OVER A

YEAR, I TAKE METHOTREXATE INJECTIONS BECAUSE I GOT TOO SICK ON THE

ORAL PILLS. I TAKE ULTRACET FOR PAIN AND NEURONTIN FOR NEUROPATHIC

PAIN. THIS MAINTENANCE PLAN IS WORKING SOMEWHAT. I AM NEVER EVER

OUT OF AT LEAST A LEVEL 7 PAIN AND I FEEL THE JOINT IN MY LEFT KNEE

ERODING QUICKLY THE LAST MONTH. STILL I DO NOT WANT TO CHANGE MY WAY

OF MAINTENANCE. I REALLY DON'T KNOW WHAT ELSE TO TELL YOU, WHAT

KIND OF PAIN LEVELS DO YOU HAVE AND FOR HOW LONG DOES IT LAST AFTER

PAIN MEDS KICK IN ? YOU CAN WRITE ME PERSONALLY AT MY E-MAIL IF YOU

LIKE.

I KNOW THIS WAS NOT MUCH HELP BUT I WELCOME YOU TO THE BEST GROUP IN

THE WORLD. EVERYONE HERE CARES ABOUT EVERYONE AND THEY ARE ALWAYS

THERE FOR YOU WHEN YOU NEED SOME HELP, ADVICE OR A BIG PICK ME UP.

WELCOME, CINDI HEIN

June 5, 2004

Welcome Dave to the group, sorry the reason why your here, but glad

you found us. I am on the weekly injections Humira usually, didn't

take it this week. I am on 10mg of Prednisone, and I take darvocet

and Tramadol for pain. I am in a lot of pain right now, having a lot

of flaring going on. I just feel like that you have to try the

different meds until you find something that helps. I have been on

different meds, they work so different on people, you just have to

keep on trying with this disease to get it under control. Good luck,

and hope to hear from you again, Tawny

> Howdy:

>

> My name is Dave Francis. I am a California native (one of the few

> left!!)

> I recently was diagnosed as having rheumatoid arthritis .. and am

> experiencing hesitancy in going on the DMARD's that the

> rheumatologists are suggesting going onto, instead of the

prednisone

> and pain killer maintenance that I am now on.

> Anyone else out there facing this same problem?

>

> Dave F.

June 5, 2004

Dave F.

I was afraid of all the medications they prescribed for me

too...when I was first diagnosed. I have been through a gammit of

them.

I do not like to take prednisone and will not take it again. I have

tried it many many times and get no relief. I talked with my doctor

about this and she understands.

I do not take either Celebrex or Vioxx...I tried both and felt no

relief. I did try Bextra and it did help. I recommend it but now

the military doesn't have enough funding for me to still get this

drug so I am on Mobic. I feel it is doing a good job like the

Bextra did.

I read extensively years ago about the DMARDS and they scare me down

to my boots but I do realise that I do need an anti - imflammatory

medication to combat the RA...mobic does that.

I am also on methotrexate and Remicade infusions. My RA hasn't

deformed any of my bones or joints yet and I feel that that is

because of the Remicade. The methotrexate does help me with the

achiness - my doctors just have to find the right dose.

The weather this winter and spring hasn't helped any at all. I feel

the pressure systems badly...remember Grandma telling you when it

was going to rain - well that is how I feel...

On days where the sun is out and the temperature is rising and it is

dry - I tend to feel better...

I know too that it isn't likely to get any better so I have to find

ways to cope with the problems that I have and to correct my diet

and to exercise (even though it hurts).

I am here for you and gladly will be your friend.

My prayers are with all my RA Support Groups friends.

God bless,

Althea

> Howdy:

>

> My name is Dave Francis. I am a California native (one of the few

> left!!)

> I recently was diagnosed as having rheumatoid arthritis .. and am

> experiencing hesitancy in going on the DMARD's that the

> rheumatologists are suggesting going onto, instead of the

prednisone

> and pain killer maintenance that I am now on.

> Anyone else out there facing this same problem?

>

> Dave F.

June 5, 2004

Dave, prednisone and pain killers will not prevent damage to your

joints. You need to be on a DMARD as early as possible in order to save

those precious joints. It is frightening to read about the DMARD's and

the possible side effects, but your rheumy will monitor you closely for

adverse effects.

Prednisone probably has more bad side effects than many of the DMARD's.

I urge you to listen to your rheumatologists.

I have had RA just about three years. I was on methotrexate with

prednisone, then Arava and now Enbrel. It is working very well for me,

as I am almost symptom free.

Good luck, Sue

On Saturday, June 5, 2004, at 12:40 PM, solid1953 wrote:

>

> My name is Dave Francis. I am a California native (one of the few

> left!!)

> I recently was diagnosed as having rheumatoid arthritis .. and am

> experiencing hesitancy in going on the DMARD's that the

> rheumatologists are suggesting going onto, instead of the prednisone

> and pain killer maintenance that I am now on.

> Anyone else out there facing this same problem?

June 5, 2004

I have been taking Humira injections since January every other week. My husband

gives it to me. It hurts but has helped me. Nothing else helped. Vioxx,

Bextra, Celebrex helped for a short time. I took MTX for a short time and felt

to sick with it. Basically I tried almost everything and that's what it took to

get the Humira as far as my insurance was concerned. I am glad that I am taking

it as hopefully it will slow down the progression. I didn't just want pain

relief, I wanted to try to slow it down. I also do some alternatives for

nutrition that have made a tremendous difference for me.

Becky

natesmom4@...

[ ] seeking friends

Howdy:

My name is Dave Francis. I am a California native (one of the few

left!!)

I recently was diagnosed as having rheumatoid arthritis .. and am

experiencing hesitancy in going on the DMARD's that the

rheumatologists are suggesting going onto, instead of the prednisone

and pain killer maintenance that I am now on.

Anyone else out there facing this same problem?

Dave F.

June 5, 2004

Thanx for the E .. my thots on all of the drugs, is that prednisone is the

'only' one is a natural drug, (derived from the cortex of the adrenal gland)..I

looked it up when it was first prescribed to me.. I have been on methotrexate

for approx. 6 mo.s or so.. I found a really complete run down on all of the

drugs available in a web page www.hopkins-arthritis .. I had my suspicions about

remicade (the drug the rheumatologist wanted me to go on) .. in this web page

they also urge non-use of corticosteroids (prednisone) .. they do state that

there is no knowledge of long term effects of the DMARDS, because of their

limited time in practice .. I really don't want to be a guinea pig, but this is

how the medical field is able to establish a base-line .. I realize .. I

initially hesitated because of the cost to my fellow medical insurance people

$2000.00 per injection (remicade) .. and when I initially tried to look for

information on the mechanics of it on the net all I found was adds from the drug

companies and offers from atttorneys to sue the doctors that administer it .. !!

.... When reading the Hopkins page read of a more appealing DMARD {actually

these are what they call TNF,tumor necrosis factor) .. called Humira .. it's

sequences are entirely human origin .. versus the remicade which is partially

made from mice genes .. this is all kinda 'science fiction' stuff .. genetic

engineering .. Oh well .. actually the more I read the more I am concentrating

on eating a more regimented diet and finding some way for the body to heal

itself..

Later .. Dave F.

Re: [ ] seeking friends

Dave, prednisone and pain killers will not prevent damage to your

joints. You need to be on a DMARD as early as possible in order to save

those precious joints. It is frightening to read about the DMARD's and

the possible side effects, but your rheumy will monitor you closely for

adverse effects.

Prednisone probably has more bad side effects than many of the DMARD's.

I urge you to listen to your rheumatologists.

I have had RA just about three years. I was on methotrexate with

prednisone, then Arava and now Enbrel. It is working very well for me,

as I am almost symptom free.

Good luck, Sue

On Saturday, June 5, 2004, at 12:40 PM, solid1953 wrote:

>

> My name is Dave Francis. I am a California native (one of the few

> left!!)

> I recently was diagnosed as having rheumatoid arthritis .. and am

> experiencing hesitancy in going on the DMARD's that the

> rheumatologists are suggesting going onto, instead of the prednisone

> and pain killer maintenance that I am now on.

> Anyone else out there facing this same problem?

June 6, 2004

I do listen .. and read .. and take into account the good intentions, lobbying

effects and greed of the pharmaceutical co.s .. I just happenned to work in a

portion of the medical industry .. a pharmacy, as a pharmacy technician .. From

my 'very limited' knowledge of the chemistry of the differrent drugs that are

being developed to try and manage this affliction, Adalimumab(Humira) is the

most appealing to me, since it's genetic engineering molecule whos " genetic

sequences are entirely human. " quote from the Hopkin's web page, addressed

obviously to 'well learned' doctors, but contains alot of language that even

people with 'limited medical knowledge', such as myself can understand.

I initially reacted to the proposal of 'remicade' negatively, for several

reasons.. 1)found two main thrusts of information on the net a.)promotion from

big drug co.s b.)offerring of services of attorneys, to sue the doctors that

prescribed it .. also @ the cost to my fellow citizens thru their medical

insurance co.s of 'from what I unstood' to be the cost of the remicade

injection of $2000.00 .. I know it is not common to 'not want to be a cost' to

other people .. greed and selfishness invades almost all sections of humanity.

Sincerely .. M. Francis

Re: [ ] seeking friends

Dave, prednisone and pain killers will not prevent damage to your

joints. You need to be on a DMARD as early as possible in order to save

those precious joints. It is frightening to read about the DMARD's and

the possible side effects, but your rheumy will monitor you closely for

adverse effects.

Prednisone probably has more bad side effects than many of the DMARD's.

I urge you to listen to your rheumatologists.

I have had RA just about three years. I was on methotrexate with

prednisone, then Arava and now Enbrel. It is working very well for me,

as I am almost symptom free.

Good luck, Sue

On Saturday, June 5, 2004, at 12:40 PM, solid1953 wrote:

>

> My name is Dave Francis. I am a California native (one of the few

> left!!)

> I recently was diagnosed as having rheumatoid arthritis .. and am

> experiencing hesitancy in going on the DMARD's that the

> rheumatologists are suggesting going onto, instead of the prednisone

> and pain killer maintenance that I am now on.

> Anyone else out there facing this same problem?

June 6, 2004

Welcome to the group, Dave!

I saw in another post of yours that you are already taking a DMARD -

methotrexate. How much?

Prednisone, a synthetic corticosteroid, is fine for very short-term use,

but long-term use creates a lot of problems. Many of the common side

effects are quite serious. Also, stay on it for too long and your

adrenal glands will be impaired to the point where they won't be able to

produce the natural corticosteroids they normally would, the result

being that you get stuck on prednisone.

All DMARDs and biologics have risks, but untreated RA also has

significant risks. DMARDs, including the biologics, are the best

treatments available to slow or stop the progression of the disease.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] seeking friends

> Howdy:

>

> My name is Dave Francis. I am a California native (one of the few

> left!!)

> I recently was diagnosed as having rheumatoid arthritis .. and am

> experiencing hesitancy in going on the DMARD's that the

> rheumatologists are suggesting going onto, instead of the prednisone

> and pain killer maintenance that I am now on.

> Anyone else out there facing this same problem?

>

> Dave F.

June 6, 2004

Welcome Dave,

I too am a California native (Northern) and have RA. I am lucky enough to

have a Rheumy in Palo Alto at Stanford Med Center, Dr. Utz. He started me on

injectible medication (DMARDS) and I was able to work for 3 more years before

I was put on total disability. I can see the progression of the disease and

am truly grateful for any med that can help slow or stop the progression. I

am 56 now, so I am coming from these decisions in the garden years of my

life. If you have questions please don't hesitate to ask.

Hope this helps,

Gentle hugs,

Carol M. in CA

June 6, 2004

Thanx for the note .. I thot I read that prednisone was made from the cortex of

the adrenal gland .. therefore I thought a natural product.. I thought also that

I read that 5mg of pred./day is safe indefinitely .. I'm tapering back down to

that now.

Had a major flare up after 5mg/day for about 6 months .. both knees, both

wrists, both ankles & I can't remember for sure, some other parts too!!! ..

bummer sister .. I'm pretty sure you understand..

On the Hopkins web site, basically instructions for doctor's, it even states

that long term effects of all of the DMARDS, including the TNF drugs, is unknown

at this time.. Obiously, I would think, because of a lack of time of testing ..

I was presssured pretty heavily to start Remicade, I hesitated for several

reasons .. 1)when I checked it out on the net .. found two things .. promotions

from big drug co.s & 2)offers from attorneys to sue doctors that had

administered it .. 3)the cost to my fellow medical insured people $2000.00 ..

After reading the Hopkins site thoroughly several times, for this old mind!,

Humira is the TNF, that I will do, if I go there..also Humira is entirely of

human genetic origin, whereas the Remicade is partially from mice .. YUCK!!

Takereasy .. DaveF.

[ ] seeking friends

> Howdy:

>

> My name is Dave Francis. I am a California native (one of the few

> left!!)

> I recently was diagnosed as having rheumatoid arthritis .. and am

> experiencing hesitancy in going on the DMARD's that the

> rheumatologists are suggesting going onto, instead of the prednisone

> and pain killer maintenance that I am now on.

> Anyone else out there facing this same problem?

>

> Dave F.

June 6, 2004

In a message dated 06/06/2004 11:27:10 Central Standard Time,

hbdave@... writes:

> I know it is not common to 'not want to be a cost' to other people .. greed

> and selfishness invades almost all sections of humanity.

>

> Sincerely .. M. Francis

>

Some of us use Remicade because it works for us, not because we are greedy

and selfish. Cary

June 6, 2004

In a message dated 06/06/2004 21:29:30 Central Standard Time,

hbdave@... writes:

> (the hardest workin folk @ the hospital..by far!! by gollies)

I'd argue that. Staff nurse, neuroscience unit. Cary

June 6, 2004

Dave,

Welcome to our group. I¹ve got a website with a lot of good info on it.

This page has many articles on prednisone:

http://rheumatoid.arthritis.freehosting.net/drugs.html#prednisone

Check out the site. I¹ve tried to make it a place to find reliable

information.

Early in my disease (back in the 70¹s) my doctor tried to prescribe

prednisone. Thankfully in nursing school I learned about the side effects

and declined to take it. In some cases there is no choice but to take

steroids, but if at all possible, I feel they should be avoided. They are

great to manage a flare or to prescribe while waiting for meds to be

effective. Some meds take several months to work. Personally, I feel the

doctors should prescribe more pain meds and less steroids.

If you find a way for our body to heal itself, please share. I¹ve tried so

many things in my 25+ years with this disease. Eliminating meat and dairy

were beneficial to me. Wheat allergy is known to cause joint pain that

mimics RA, so some have gone on a wheat free diet. It is very difficult

since wheat is hidden in so many foods. Fasting has been known to alleviate

RA symptoms and that is why it is thought there could be a connection

between RA and food. I¹ve read so many theories, tried so many of them, but

only my Enbrel has been truly helpful. I started it shortly after it was

approved in 98, and am lucky to have had no problems. All the DMARDs have

potential side effects and yes, they scare me. But I¹ve lost to many joints

to risk loosing more. Everyone has to make the choice of what risks they

are willing to take.

a

> Thanx for the E .. my thots on all of the drugs, is that prednisone is the

> 'only' one is a natural drug, (derived from the cortex of the adrenal

> gland)..I looked it up when it was first prescribed to me.. I have been on

> methotrexate for approx. 6 mo.s or so.. I found a really complete run down on

> all of the drugs available in a web page www.hopkins-arthritis .. I had my

> suspicions about remicade (the drug the rheumatologist wanted me to go on) ..

> in this web page they also urge non-use of corticosteroids (prednisone) ..

> they do state that there is no knowledge of long term effects of the DMARDS,

> because of their limited time in practice .. I really don't want to be a

> guinea pig, but this is how the medical field is able to establish a base-line

> .. I realize .. I initially hesitated because of the cost to my fellow medical

> insurance people $2000.00 per injection (remicade) .. and when I initially

> tried to look for information on the mechanics of it on the net all I found

> was adds from the drug companies and offers from atttorneys to sue the doctors

> that administer it .. !! ... When reading the Hopkins page read of a more

> appealing DMARD {actually these are what they call TNF,tumor necrosis factor)

> .. called Humira .. it's sequences are entirely human origin .. versus the

> remicade which is partially made from mice genes .. this is all kinda 'science

> fiction' stuff .. genetic engineering .. Oh well .. actually the more I read

> the more I am concentrating on eating a more regimented diet and finding some

> way for the body to heal itself..

>

> Later .. Dave F.

June 6, 2004

Cool .. I had minor medical exposure as a pharmacy tech. (the hardest workin

folk @ the hospital..by far!! by gollies) .. anyhow looking back & trying to

figure out what changed, just before I came down with this .. unfortunately a

few things changed .. so I'm not sure if any or all of them in concert had

anything to do with it ..

1) I relaxed on my eating habits, which I learned from the original 'Beverly

Hills Diet' .. if you get a chance to get the old issue .. now only found in

used book stores .. pick it up .. excellent reading .. great author .. makes you

lauph, short book and everything makes sense... all the other diets gleamed off

of the information she put together .. fit for life, etc.

2) also bought into the 'sun is bad for you thang' .. I work outside and always

have in the sun (Land Surveyor) .. covered up everything .. even wore baseball

gloves so my hands were covered ..

Then after I came down with this and started reading .. found out getting in

the sun is how your body makes Vit D .. So guess what .. I'm sunnin myself

again.. like I always did for 50 years!!

I read that nightshades affect some people .. found out that tomatoes now wipe

me out .. tried em 3 times .. all three times wrists locked up on me ..

I read the same thing about wheat products .. in a gal's book about how she

cured her own arthritis .. too bad .. I really like bread !!!

I've done the first week of the BH diet and dropped about 7 to 8 lbs. , which

is pretty normal .. I've done it many times before .. Judy Mazel (the author)

says you're supposed to do the first week about once a year, even if you

'Conciously Combine' all year .. just to clean your body out good.

Later .. DaveF