Re: Can anyone help or advise please?

[Guest guest]

Hi Graham, and welcome. I am sorry to hear that your wife's RA is progressing. I

believe that natural treatments are helpful, but I would discourage you from

giving up on the biologics. Yes, they are powerful drugs, and have some serious

potential side effects. However they have been life altering for many of us. My

grandmother died young and after years of pain from RA. I am able to do so much

and my rheum said she would never know that I had RA if she weren't looking at

my chart. I hope you hear more positive stories and consider trying another

biologic. Kate F

Sent from my iPhone

On Jan 11, 2011, at 11:06 AM, " grahamsimpkin " <grahamsimpkin@...>

wrote:

> Hello everyone.

> Can anyone give me some help or advice please. My wife has RA and we live in

the UK, she started with it just over five years ago and we have been trying to

fight it ever since.

> When she was first diagnosed, she initially refused the drugs that the

rheumatologist prescribed/recomended ( scary side effects ) plus her dad also

had RA and died young ( 57 ) he was on a coctail of different tablets but none

seemed to work for him but caused other problems.

> We tried the alternative path, I grew wheatgrass and juiced it, sprouted

seeds, she took supliments etc, we changed to more healthy eating and juicing (

lots of different things tried )

> It seemed to hold it at bay for about two years but when she visited the

rheumatologist to get the results of xrays and tests he told us that the disease

was progressing as erosions were visible in he foot xrays and told her that she

faced some stark choices.

> After long and hard thinking she decided to give the drugs a try.

> first sulfasalazine, she tolerated this but was told that methatrexate had to

be taken as well to do any good.

> So she started on the Methotrexate, had bad sickness side effects so we went

from tablets to injections but then she also started getting infections, ending

up with pneumonia and pleurisy ( please Forgive any spelling mistakes, these

medical terms defeat me )

> So had to come off the methotrexate and have treatment from a chest

specialist. When she was ok again went back on to the methotrexate but

infections, (chest and dental/abscesses ) started again.

> methotrexate was stopped.

> Next came embrel. After five injections, no improvement but bad injection site

reactions, she had another chest infection so the drug was halted for antibiotic

treatment. Back on the enbrel, but again three injections and an infection. drug

was discontinued.

> Now the rheumatologist wants her to start on rituximab infusions but after all

the trauma and stress of the last three years she has decided that enough is

enough and is not going to have them.

> Can anyone here please give us any help or advice regarding things to try,

diet or alternative treatments /supliments that may help

> any advice on things that have helped or improved your condition will be very

gratefully received, in fact any any ray of hope from someone who has made

progress against this vile disease without using the strong frightening drugs

would be fantastic.

> Thank you in advance.

> best wishes to you all.

> Graham.

> PS, sorry for the long post.

>

>

[Guest guest]

Hello my name is ,i was diagnosed with this decease many years ago and

still as

of this day have no idea where or how i picked it up,but have learn to manage

it;but keep

in mind we are all different.Now with that in mind,here we go:As you know by now

their

is no cure for Rheumatoid Arthritis at this time but we all deal with it the

best way we can

through are knowledge and through others indirectly.

Now with me :Keep in mind the Drugs on the market today " Scare me aswell " but

others

praise them,like i said were all different,as you can tell i don't take

Pharmaceutical drugs

at all and probable never will:Notice how i said probable,only if health

requires it,and then

i probable could not take any Pharmaceutical drugs anyway because of other

health

problems so i'm one of those who can't take any drugs if i wanted to.

So i take the other side of treatment,which is self control:What do i mean well

i watch

what i eat,work out with weights,jog/speedwalk,stretch/yoga,keep stress to a

bare

minimum which is hard to with a Business to run .You must stay active,i found

this to

be very important.Oh and another fact is " Hot Baths " i take frequently and the

most

important is to " Pray " it helps to keep me focused on what is important.

Don't get me wrong i have Flair ups aswell,but what i'm doing seems to work

with me 90.0% of the time.I'm not a Rich/Have a lot of Money person so i get

special help when

it's available.I believe things happen for a reason,find out what this reason

is;go with your

self conscious it's usually right,but thats my thoughts;you do what you think is

right!.

I'm sorry i can't be of more help.Stay active.your friend .

From: grahamsimpkin <grahamsimpkin@...>

Subject: [ ] Can anyone help or advise please?

Date: Tuesday, January 11, 2011, 12:06 PM

 

Hello everyone.

Can anyone give me some help or advice please. My wife has RA and we live in the

UK, she started with it just over five years ago and we have been trying to

fight it ever since.

When she was first diagnosed, she initially refused the drugs that the

rheumatologist prescribed/recomended ( scary side effects ) plus her dad also

had RA and died young ( 57 ) he was on a coctail of different tablets but none

seemed to work for him but caused other problems.

We tried the alternative path, I grew wheatgrass and juiced it, sprouted seeds,

she took supliments etc, we changed to more healthy eating and juicing ( lots of

different things tried )

It seemed to hold it at bay for about two years but when she visited the

rheumatologist to get the results of xrays and tests he told us that the disease

was progressing as erosions were visible in he foot xrays and told her that she

faced some stark choices.

After long and hard thinking she decided to give the drugs a try.

first sulfasalazine, she tolerated this but was told that methatrexate had to be

taken as well to do any good.

So she started on the Methotrexate, had bad sickness side effects so we went

from tablets to injections but then she also started getting infections, ending

up with pneumonia and pleurisy ( please Forgive any spelling mistakes, these

medical terms defeat me )

So had to come off the methotrexate and have treatment from a chest specialist.

When she was ok again went back on to the methotrexate but infections, (chest

and dental/abscesses ) started again.

methotrexate was stopped.

Next came embrel. After five injections, no improvement but bad injection site

reactions, she had another chest infection so the drug was halted for antibiotic

treatment. Back on the enbrel, but again three injections and an infection. drug

was discontinued.

Now the rheumatologist wants her to start on rituximab infusions but after all

the trauma and stress of the last three years she has decided that enough is

enough and is not going to have them.

Can anyone here please give us any help or advice regarding things to try, diet

or alternative treatments /supliments that may help

any advice on things that have helped or improved your condition will be very

gratefully received, in fact any any ray of hope from someone who has made

progress against this vile disease without using the strong frightening drugs

would be fantastic.

Thank you in advance.

best wishes to you all.

Graham.

PS, sorry for the long post.

[Guest guest]

Graham,

I wish I could help. I'm in the same boat as your wife. Methotrexate will take

me out of commission for two days after I take it. I just had my second dose of

Rituxan, and it doesn't seem to be working yet. Just like your wife, I am

petrified of what all of these drugs will do to me, but at the same time, I just

want my pain to stop. I want my life back. I hope she doesn't give up.

Missie-PA

>

> Hello everyone.

> Can anyone give me some help or advice please. My wife has RA and we live in

the UK, she started with it just over five years ago and we have been trying to

fight it ever since.

> When she was first diagnosed, she initially refused the drugs that the

rheumatologist prescribed/recomended ( scary side effects ) plus her dad also

had RA and died young ( 57 ) he was on a coctail of different tablets but none

seemed to work for him but caused other problems.

> We tried the alternative path, I grew wheatgrass and juiced it, sprouted

seeds, she took supliments etc, we changed to more healthy eating and juicing (

lots of different things tried )

> It seemed to hold it at bay for about two years but when she visited the

rheumatologist to get the results of xrays and tests he told us that the disease

was progressing as erosions were visible in he foot xrays and told her that she

faced some stark choices.

> After long and hard thinking she decided to give the drugs a try.

> first sulfasalazine, she tolerated this but was told that methatrexate had to

be taken as well to do any good.

> So she started on the Methotrexate, had bad sickness side effects so we went

from tablets to injections but then she also started getting infections, ending

up with pneumonia and pleurisy ( please Forgive any spelling mistakes, these

medical terms defeat me )

> So had to come off the methotrexate and have treatment from a chest

specialist. When she was ok again went back on to the methotrexate but

infections, (chest and dental/abscesses ) started again.

> methotrexate was stopped.

> Next came embrel. After five injections, no improvement but bad injection site

reactions, she had another chest infection so the drug was halted for antibiotic

treatment. Back on the enbrel, but again three injections and an infection. drug

was discontinued.

> Now the rheumatologist wants her to start on rituximab infusions but after all

the trauma and stress of the last three years she has decided that enough is

enough and is not going to have them.

> Can anyone here please give us any help or advice regarding things to try,

diet or alternative treatments /supliments that may help

> any advice on things that have helped or improved your condition will be very

gratefully received, in fact any any ray of hope from someone who has made

progress against this vile disease without using the strong frightening drugs

would be fantastic.

> Thank you in advance.

> best wishes to you all.

> Graham.

> PS, sorry for the long post.

>