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Medical Forum / Diseases and Disorders / Arthritis / August 2007

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First Post, RA questions

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Gary Helfert - 28 Aug 2007 07:10 GMT
My wife is 49 and about 9 months ago discovered she had arthritis. From
tests taken and symptoms experienced it looks pretty certain she has
rheumatoid arthritis.

The doctor said she could take drugs to lower her immune system but it
sounded to radical to her. She has always had excellent health and rarely
ever got sick. I thought it might be worth a try. Anybody have experience
with drugs that lower immune system response?
Harvey R. Stone - 28 Aug 2007 11:57 GMT
> My wife is 49 and about 9 months ago discovered she had arthritis. From
> tests taken and symptoms experienced it looks pretty certain she has
[quoted text clipped - 4 lines]
> ever got sick. I thought it might be worth a try. Anybody have experience
> with drugs that lower immune system response?

Ooh about 3/4 of the people posting in this newsgroup.   I have RA and on
average your doctor has told you the truth.  The sooner your wife adjusts to
the idea the better she is going to be.   What has always been does not
matter now.   It is from today forward that counts for your wife.   Please
try to get her to read and post here where people want to help her live with
what she has because,,,,,,,, we have been there,,,, done that too.

Harv
Adelle - 28 Aug 2007 15:17 GMT
> My wife is 49 and about 9 months ago discovered she had arthritis. From
> tests taken and symptoms experienced it looks pretty certain she has
[quoted text clipped - 4 lines]
> ever got sick. I thought it might be worth a try. Anybody have experience
> with drugs that lower immune system response?

Gary - I'm very close to your wife's age and I just started Methotrexate,
one of the first step medications which lower the immunity. It seems
counterintuitive - leave the body more prone to infection. It may even seem
'radical.' But its what the disease requires.

In RA (shorthand for Rheumatoid Arthritis), your immune system,  from some
'malfunction,' has decided that your own body is something it needs to
defend against, which is why RA is termed an 'auto-immune disease.' The body
is attacking itself. That process needs to be stopped to protect your wife's
own body. Unfortunately, one can't just stop the immune system from
attacking the body and redirect it more appropriately. Maybe one day, but
not now. All you can do is lower the total immune response so it stops
damaging the patient's own body.

At its most basic level, RA attacks the joints, causing erosions of the
protective cartilage and bone. Once that happens, the damage cannot be
reversed, only slowed (sometimes stopped) by these medications which lower
the body's immune response. In some versions of RA, other organs of the body
are attacked in addition to the joints. It can be a very debilitating
disease if left inadequately treated.

Because my symptoms have been in the 'mild' range for this disease, I have
been on the very 'mildest' treatments for about four years now, hoping that
it would be enough. I have a really excellent rheumatologist (he is the
third I tried. Finding a really excellent one is difficult). He followed a
very conservative course of treatment. Its recently been found that keeping
tabs on the condition of the hands is an excellent way of following the
early stages of RA. He has been doing an MRI of my hands every year since
the study showing this has come out.

This year, the MRI (my third) showed its first erosion. It means the
medication was not protecting my body. And my hand is now permanently
damaged. So we added the first level of these immune reducing drugs. Again,
My symptoms are pretty mild, so a really heavy hitter isn't called for
unless tests show it isn't 'enough.' Symptoms, combined with a blood test to
measure how high the body's immune response is (C-Reactive Protein goes up
in response to any inflammation in the body) tells a doctor how aggressively
the disease is acting. Medication to reduce this response needs to be as
aggressive as the body's own inappropriate activity. Everyone responds to
medication differently. It may take trying different medications, or taking
them in combination.

What your wife does now will not only affect how she is feeling now, it will
also affect her ability to care for herself as she ages: How well will she
be able to use her hands to dress, eat and toilet; whether she will need
hip, knee, or even shoulder replacements; how well she can lead an active
life on her own two feet, or from a motorized scooter or wheelchair - all
depends on preventing damage as much and as early as possible.

So, if you plan on growing old together, and you sound like a truly caring
husband, you need to think about what her life will look like all through
the course of your marriage. Encourage her to do what is truly best for her
long term health, so you can enjoy many wonderful years together.

Wishing you both all good things!
Adelle
Gary Helfert - 28 Aug 2007 19:33 GMT
If you have had RA for 4 years there must have been drugs or changes in year
life style that made you feel better than usual. You must have good days &
bad days. Can you make any connection on what minimizes the bad days? For
instance I convinced my wife to take 3 aspirin before she went to bed. (she
never liked drugs of any kind, even aspirin). She said it seemed to help.
I was hoping this newsgroup might provide some tricks people used to
minimized their suffering. Sounds like the medication you tried did not work
for you. Even this information is useful so we don't persue dead ends.
Hopefully we will hear from others what worked for them (and what didn't).

Thanks for your reply
Gary

>> My wife is 49 and about 9 months ago discovered she had arthritis. From
>> tests taken and symptoms experienced it looks pretty certain she has
[quoted text clipped - 62 lines]
> Wishing you both all good things!
> Adelle
Adelle - 28 Aug 2007 19:57 GMT
> If you have had RA for 4 years there must have been drugs or changes in
> year life style that made you feel better than usual. You must have good
[quoted text clipped - 5 lines]
> minimized their suffering. Sounds like the medication you tried did not
> work for you.

Not true. It worked for a while, then stopped. That's why its important to
not be wedded to a particular approach. Things change over time.

Aspirin, or any anti-inflammatory needs to be maintained as a constant blood
level to really help. Three aspirin at night do something, but not as much
as taking two every 4-6 hours round the clock and maintaining an even amount
of the medication in the bloodstream. Consistency is important. So it may
make her more comfortable for a while, but not reduce overall inflammation.
And aspirin does nothing to prevent future damage. Its an 'in the now'
comfort measure.

>Even this information is useful so we don't persue dead ends. Hopefully we
>will hear from others what worked for them (and what didn't).

Well, what worked for me with my early RA may not work for your wife because
we are different people with different responses to medication and therapies
and may also be at different stages of the disease process. And just because
something eventually stopped working for me doesn't mean it wasn't effective
and worthwhile for most of the time I used it.

You need to find a really good rheumatologist. And your wife needs to be an
active and educated partner in her own care. Until you learn more about how
RA affects the body and how it is treated, just listening to others stories
won't be helpful because you won't have the context as to why people made
the choices they they did, why they progressed from x medication to y or
chose z over y.

BTW - Exercise is always important, but sometimes not practical until pain
and inflammation are under control. And then guidance to exercise without
worsening things is important.

Adelle

>>> My wife is 49 and about 9 months ago discovered she had arthritis. From
>>> tests taken and symptoms experienced it looks pretty certain she has
[quoted text clipped - 63 lines]
>> Wishing you both all good things!
>> Adelle
jofirey - 28 Aug 2007 21:59 GMT
>> If you have had RA for 4 years there must have been drugs or changes in
>> year life style that made you feel better than usual. You must have good
[quoted text clipped - 36 lines]
> and inflammation are under control. And then guidance to exercise without
> worsening things is important.

Its funny, now that Charlie has osteoarthritis in his knee, he has shut up
about how much better I'd feel if I got out and did more.

Jo
jofirey - 28 Aug 2007 21:57 GMT
> If you have had RA for 4 years there must have been drugs or changes in
> year life style that made you feel better than usual. You must have good
[quoted text clipped - 10 lines]
> Thanks for your reply
> Gary

The amount of aspirin it takes to control arthritis inflammation and pain
will cause gastrointestinal bleeding in an awful lot of people.

I do find Tylenol to be a pretty good pain killer a lot of the time, and the
Arthritis formula taken at bedtime can mean you still have some painkiller
in your system when you wake up.

Don't try to second guess the doctors, or at least if you do be sure to tell
them what you are doing.

Jo
blueonblack101@gmail.com - 28 Aug 2007 23:34 GMT
> If you have had RA for 4 years there must have been drugs or changes in year
> life style that made you feel better than usual. You must have good days &
[quoted text clipped - 8 lines]
> Thanks for your reply
> Gary

Gary, I will make one connection that you and your wife might
pursue...diet.  Here's another connection...odors, such as perfume,
household chemicals, etc

All the drugs that rheumies prescribe are just that, drugs.  And most
come with a huge price to pay for a year or two of relief.

Drugs that supress the immune system will cause other issues.  Hint,
never go out in public during the cold or flu season while being on
drugs that suppress the immune system.  A simple situation as standing
in line at the grocery store and some careless person coughs on you or
sneezes near you can make you sick for weeks...why?   Because the
immune system is now suppressed to help with RA symptoms!  Been there,
suffer that, every flu season.

I have had RA for over 12 years and the two most important things that
affect my particular body are, diet...what I eat, and what I smell.
Again, simple things like perfume, after shave, candles, cleaning
fluids...even the air quality where you live.  Believe it or not,
allergies play a huge roll with this disease.

I have found that some food items really hammer my RA.  Things like
basil, paprika, dill, fried foods, some dairy products, foods
containing MSG,  foods and drinks with processed sugar.

Check it out, do some research.  Not all rheumatoid arthritics are
affected by their diet or smells, but many are, and don't even know
it!

Rheumatologists won't tell you this, because they don't know this.
Their business is prescribing drugs, period.

I hope that helps a bit.  If you feel inclined, visit my RA blog that
I recently put together.  Lots of good info and references there and
much more to come.

http://arthritis-ra.blogspot.com

Best wishes for both you and your wife...and I admire you for taking
an active role in her issues!

Bob
johnie - 29 Aug 2007 01:20 GMT
Bob,ya know. its good ya found a way to manage your symptoms with
diet. I have used diet as a tool also over the last 30 years but it
has never been enough and you should know that one size never fits all
with this disease. It takes different approaches and combinations of
both conventional and alternative protocols to combat the complexity
of RA.
You should also know better than make a blanket statement about RDs.
There are lots of good ones out there cause I got a great one after
going thru my share of bad.

And since you are so opposed to immune suppression you should know
that prednisone is very much an immune suppressant drug. Some very
good studies on that one. Its not the immune suppression thats the
problem. Its the microfractures I live with daily due to the steroid
induced osteoporosis.

A balanced, holistic approach is the key bob. You make it about taking
sides and that is an approach as ignorant as negating all things
alternative (like diet). An open mind is the key bob. Try it. you
might learn something new and thats always a good thing.

johnie
jofirey - 29 Aug 2007 02:00 GMT
>> If you have had RA for 4 years there must have been drugs or changes in
>> year
[quoted text clipped - 20 lines]
> All the drugs that rheumies prescribe are just that, drugs.  And most
> come with a huge price to pay for a year or two of relief.

Now that is a blanket statement that I'll bet you cannot support.  Not all
drugs are bad.  Not all drugs are the same.  And not many drugs are worse
than that which they hope to prevent or alleviate.

> Drugs that supress the immune system will cause other issues.  Hint,
> never go out in public during the cold or flu season while being on
[quoted text clipped - 3 lines]
> immune system is now suppressed to help with RA symptoms!  Been there,
> suffer that, every flu season.

Guess what, there is a really simple way to deal with that.  Most of us hope
to be able to get out of the house once in a while or at least like to live
with or visit people that do.  So colds and the flu are unavoidable.  So
once in a while, with my doctors advice and blessing, I'll skip a dose or
two of MTX when I have a cold.  Many of us also will delay a dose of other
DMARDS while dealing with an infection.

> I have had RA for over 12 years and the two most important things that
> affect my particular body are, diet...what I eat, and what I smell.
> Again, simple things like perfume, after shave, candles, cleaning
> fluids...even the air quality where you live.  Believe it or not,
> allergies play a huge roll with this disease.

Allergies with RA aren't news for most of us.  A mucked up immune system
isn't particular about what it does wrong.  I have found that if my asthma
is acting up, I won't have hay fever.

> I have found that some food items really hammer my RA.  Things like
> basil, paprika, dill, fried foods, some dairy products, foods
> containing MSG,  foods and drinks with processed sugar.
>
> Rheumatologists won't tell you this, because they don't know this.
> Their business is prescribing drugs, period.

That blanket statement is bull, and you should know it.  It will keep you
from getting help where it is available.

Jo
california_chief - 29 Aug 2007 06:46 GMT
> All the drugs that rheumies prescribe are just that, drugs.  And most
> come with a huge price to pay for a year or two of relief.

Can you back up those statements?

> Rheumatologists won't tell you this, because they don't know this.
> Their business is prescribing drugs, period.

And you can't back up those statements.

Sounds rather defammatory, even libellous.

... Epitaph:  JOLLY GREEN GIANT --  Rest In Peas
Aina Nilsen - 30 Aug 2007 18:07 GMT
>> If you have had RA for 4 years there must have been drugs or changes in
>> year
[quoted text clipped - 20 lines]
> All the drugs that rheumies prescribe are just that, drugs.  And most
> come with a huge price to pay for a year or two of relief.

I got agressive treatment with DMARDS as soon as the RA-specialists were
sure I had RA. This help me on my way to recovery, and in about 18 months I
went from 100% sick leave to working full time. I had not had any longer
sickleave since 2001, when I had to work 60 % for some weeks this spring.
Some of it due to me being stubborn and not raising my prednisone level with
less than a gram.

> Drugs that supress the immune system will cause other issues.  Hint,
> never go out in public during the cold or flu season while being on
[quoted text clipped - 3 lines]
> immune system is now suppressed to help with RA symptoms!  Been there,
> suffer that, every flu season.

I'm on these drugs since 1999 and have not had a serious flu since that. Yes
I do get a cold every winter and a few years a go I had some bronchitis, but
my number of sick days has not really increased that much since my healthy
days

> I have had RA for over 12 years and the two most important things that
> affect my particular body are, diet...what I eat, and what I smell.
[quoted text clipped - 23 lines]
>
> Bob

There might be many ways to Rome, and I'm not sure your way is the only one
either. This said, I use heavy supplementation of omega 3 and I also use
some other herbs recommended to my by other readers in this group.  I do
however not believe that I would function as well today without the
aggressive treatment from my doctors.

Aina
the lurker in Norway
Diane - 30 Aug 2007 23:53 GMT
gary, when i was first diagnosed, i also felt the rheumatologist's
suggested medications were too 'radical.' i put off using the disease
modifying drugs for a year. . . and i have the permanently destroyed
joints to prove it. doctors tend to treat more aggressively from the
start these days to avoid that destruction.

also, aspirin can eat a hole in stomach lining. my esophagus hurt just
reading that your wife takes three at night! please have her go back
to the rheumatologist and plan a safe course of action with him or
her.

diane
Harvey R. Stone - 29 Aug 2007 02:41 GMT
> If you have had RA for 4 years there must have been drugs or changes in
> year life style that made you feel better than usual. You must have good
[quoted text clipped - 10 lines]
> Thanks for your reply
> Gary

Hi Gary,,,3 aspirin right before bedtime will eat a hole in your wife's
stomach.
With food an hour before bedtime and you might get by with not much damage.
    What worked best for me was Naprosyn better than aspirin and it will
work on your insides also.  Good luck with it.
Harv
johnie - 28 Aug 2007 20:44 GMT
> My wife is 49 and about 9 months ago discovered she had arthritis. From
> tests taken and symptoms experienced it looks pretty certain she has
[quoted text clipped - 4 lines]
> ever got sick. I thought it might be worth a try. Anybody have experience
> with drugs that lower immune system response?

gary, sorry about your wifes dx. She has a lot of work to do and
actually thats the good news. Ive had RA for nearly 30 years and it
wasn't that long ago there was little to research and no real options
available. Gold was available and mtx came along and that was it.
There have been some real breakthrus the last 10 years and your RD
needs to be discussing the half dozen new drug therapies available
with your wife and she needs to be reading everything she can find.
Apparently there are still RDs out there that withhold meaningful
treatment until damage occurs. It has become more common to treat RA
aggressively at the very beginning with one of the new anti-TNF
therapies in the hope of preventing all that early damage.
Unfortunately it has been found that the early damage is often the
most destructive and the longer it goes on the more difficult it
becomes to slow it down.
Good luck and encourage your wif to join the group and keep us updated
on how she does. There is a lot of wisdom and information amongst the
hundreds of folks that post and read here.

just a side note. Nearly all drugs lower the immune response. Anti-
biotics do as well as prednisone,

johnie
ravi - 30 Aug 2007 02:43 GMT
> > My wife is 49 and about 9 months ago discovered she hadarthritis. From
> > tests taken and symptoms experienced it looks pretty certain she has
[quoted text clipped - 27 lines]
>
> johnie

please condact kamalisethu@yahoo.co.in
we discovered one miracle and different type of herbal based
treatment .
psoriasis and arthritis totaly clear.
jofirey - 28 Aug 2007 21:53 GMT
> My wife is 49 and about 9 months ago discovered she had arthritis. From
> tests taken and symptoms experienced it looks pretty certain she has
[quoted text clipped - 4 lines]
> ever got sick. I thought it might be worth a try. Anybody have experience
> with drugs that lower immune system response?

Sometimes you have to find a different way to say something for it to sound
acceptable.

Rather than 'lower' the immune system response, think of it as 'normalize'
the immune system response.

I come from a family that lived very long lives.  They raised most of their
very large families to adulthood in spite of epidemics of one sort or
another and in spite of much higher infant and childhood death rates around
them.

They have also left us with a kick a.s legacy of allergy and other immune
system sorts of problems.  Various sorts of arthritis, lupus, etc.  Probably
the migraines and depression as well.

When I started Methotrexate to cut down on the inflammation in my joints and
the resulting damage, I was surprised to find it was also a wonder drug for
my asthma as well.  A well known result, just has too serious side effects
to be standard treatment for asthma.

You really don't want to know how many poisons I've consumed over the years
to keep my "healthy" system in check.

Jo
Adelle - 28 Aug 2007 22:10 GMT
>> My wife is 49 and about 9 months ago discovered she had arthritis. From
>> tests taken and symptoms experienced it looks pretty certain she has
[quoted text clipped - 24 lines]
> drug for my asthma as well.  A well known result, just has too serious
> side effects to be standard treatment for asthma.

Jo -

I never knew that!!! And its making so much sense. I suddenly have  more
air/breathing capacity when I lead services. And its pretty coincidental to
starting the methotrexate.

Thanks!!!!

Adelle
jofirey - 29 Aug 2007 02:04 GMT
>>> My wife is 49 and about 9 months ago discovered she had arthritis. From
>>> tests taken and symptoms experienced it looks pretty certain she has
[quoted text clipped - 32 lines]
>
> Thanks!!!!

Just don't forget that if you skip or stop MTX for any reason, you will need
to go back to more support for your breathing.

I got in trouble without thinking, should have known better.  I stopped MTX
for my ear surgery and then stayed off it for a while as I was having a bit
of a remission.  My asthma kicked into high gear.  Felt like a fool when I
went to the doctor and he suggested I should get back on some of my asthma
medicine.

Jo
Gary Helfert - 29 Aug 2007 02:25 GMT
Thanks for your interesting post. I always suspected my wife's immune system
was running at 110%. It wasn't natural. The few times she did get a cold, it
was gone within 24 hours. She has always been afflicted with severe
allergies during the spring season and I remember that allergies are
actually an overly active immune response.

Thanks, I feel better about exploring immune surpression drugs.
One odd occurrance; Her allergy didn't occur this last spring.
I wonder if it's just coincidence it disappeared around the same time her RA
showed up?

>> My wife is 49 and about 9 months ago discovered she had arthritis. From
>> tests taken and symptoms experienced it looks pretty certain she has
[quoted text clipped - 29 lines]
>
> Jo
california_chief - 29 Aug 2007 07:07 GMT
> My wife is 49 and about 9 months ago discovered she had arthritis.
> From tests taken and symptoms experienced it looks pretty certain
[quoted text clipped - 4 lines]
> ever got sick. I thought it might be worth a try. Anybody have experience
> with drugs that lower immune system response?

DMARDs -- Disease Modifying Anti-Arthritic Drugs -- are an excellent way to
combat arthritis.  They don't stop the disease, they don't cure any damage
that's already been done.  NOTHING CAN DO THAT.  But they can slow down the
progression of arthritis.

NSAIDs -- Non-steroid Anti-Inflammatory Drugs -- help reduce inflammation
and pain.  Reducing inflammation reduces damage to the body's systems.

But don't forget low impact exercises -- water exercises, walking (not
jogging or running).  I even added square dancing and lost pound after
pound.   That's another thing - keep the weight down because every extra
pound on the body damages it, especially in people with arthritis.

When I was diagnosed in 1976, there were only aspirin and Indocine (now
available OTC in non-prescription strength generic formulas), gold, and a
couple other remedies.  Today there are dozens and dozens of drugs.  Not all
work for everyone, and when they do work not all are effective beyond a few
years at which time a person must switch to something different.

By the way, I was always healthy before arthritis hit me.  I had 23 years in
the Naval Reserve (and I was able to complete 26 before retirement), high
desert camping and hiking.  I had been a cop for 10 years before trading my
badge for one from the fire department in the same city.  Diagnosis came 1
year later with a 20-pound lifting and carrying restriction and I moved into
administration for the next 12 years before retiring on disability.

... Epitaph:      ANGELA LANSBURIED HERE

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