Out of Denial - Need Your Support

January 6, 2006

Prakasha,

At one time I could have been the author of this email. I started off

on traditional

meds back in the 70's but as I became more knowledgeable, thanks to

the internet, I also became

more afraid of the side effects so I turned to alternative medicine.

I often wonder if the damage

done during that time period would have been less had I taken meds,

but we can't go backwards.

I haven't given up on alternative, I've just added traditional to my

regiment. I believe the combination

is what's best for me. I take things like ginger, turmeric, omega

3's, etc for inflammation but I also take

naproxen. I eat a very healthy diet, but know that it isn't enough.

The scariest med I've taken was Enbrel. It was the first biological

approved and I started it only about a

month after it was approved. But I was desperate. I am glad I took

the chance because it helped me

more than any drug I had ever taken and I had NO side effects.

If your doctor carefully monitors your labs, problems can be caught

early and usually any abnormal

lab results will be reversed when you stop the offending medication.

I'm truly sorry that the natural approach wasn't enough. For most

people it is not enough although some

say they've gotten better with the natural approach. I often wonder

if those people really have RA or

maybe they have something else that has similar symptoms. If you

didn't try the natural approach, you'd

always wonder if you should have. Now that you know it isn't enough

you can move on to another

treatment. I think we were all afraid when we started meds. We'll be

there for you so try not to worry.

Just get your labs done regularly so you know how it's affecting you.

a

On Jan 6, 2006, at 11:05 AM, brightt@... wrote:

> Wonderful brave & inspiring ones -

>

> I've hesitated to write this since so many of you have much bigger

> challenges to deal with. But, the fact is, I need your help.

>

> I was diagnosed with RA in 1999. Of course, at first I was

> overwhelmed.

> The possible side effects of the medication the rheumy recommended

> frightened me. I resolved to try to take care of it with

> natural/alternative medicine. I do feel that the strict " natural "

> program I pursued (with the advice of a wonderful herbalist) helped

> control the inflammation and reduced the number of and length of

> flares.

>

> However, now I must face the fact that--in spite of this--my RA has

> definitely progressed. My joints have continued to deteriorate. And I

> know I must try other means to deal with it. I just had a thorough

> checkup with my GP. My liver, kidneys, etc. are all great. But my

> RF is

> 130 and my SED is 98, up quite a bit from my original tests.

>

> Now I know I must investigate conventional medicine. But I'm still

> scared to pieces of the possible side effects. So scared that tears

> come into my eyes just from typing these words and admitting my fears

> to you. Most of my physical systems are in good shape; I'm frightened

> about, frankly, destroying them.

>

> Any insight, encouragement, thoughts, cautions, inspiration or

> whatever

> comes to mind that you'd like to share with me will be so gratefully

> embraced.

>

> Thank you so much for all that you are, all that you do, and the way

> all of you honestly (and more bravely than you realize) deal with your

> challenges.

>

> Prakasha

>

January 6, 2006

Dear Prakasha,

I am right there with you. I have been in denial since my diagnoses in 1999 as

well. I was teaching aerobics at the time and despite the dr discouraging it, I

continued to teach 4 classes a week. It was not long after that I realized that

it was too much for my body to handle. I seemed to just stay active and that has

kept my away from meds. I was and still am taking Omega 3/6/9 which is a natural

joint enhancer and it has helped keep my joints limber. I was having a great

deal of trouble all summer and just kept telling myself it was just daily aches

and pains. By Sept. I was in so much pain just getting out of bed that I knew it

was time to get some help. I have been taking 10mg of methotrexate since Oct.

and I am still having a hard time really seeing any major results. The

anti-inflammatory I am on seems to help with the swelling and pain, but has

recently started to upset my stomach. I see my rheumy in Feb. and am searching

for answers to some concerns I have regarding the

mtx. and how much relief I should be feeling from it. My dr wants to increase

my dosage, but I am leary because I am such a freak when it comes to taking any

type of meds. I am having a hard time adjusting to my new life with meds, how do

you feel about taking them? Am I alone in my feeling?

Best of luck on your journey and please feel free to contact me in the future.

I too am new to this support group, but the response I have had is fantastic!

Peggy

brightt@... wrote:

Wonderful brave & inspiring ones -

I've hesitated to write this since so many of you have much bigger

challenges to deal with. But, the fact is, I need your help.

I was diagnosed with RA in 1999. Of course, at first I was overwhelmed.

The possible side effects of the medication the rheumy recommended

frightened me. I resolved to try to take care of it with

natural/alternative medicine. I do feel that the strict " natural "

program I pursued (with the advice of a wonderful herbalist) helped

control the inflammation and reduced the number of and length of

flares.

However, now I must face the fact that--in spite of this--my RA has

definitely progressed. My joints have continued to deteriorate. And I

know I must try other means to deal with it. I just had a thorough

checkup with my GP. My liver, kidneys, etc. are all great. But my RF is

130 and my SED is 98, up quite a bit from my original tests.

Now I know I must investigate conventional medicine. But I'm still

scared to pieces of the possible side effects. So scared that tears

come into my eyes just from typing these words and admitting my fears

to you. Most of my physical systems are in good shape; I'm frightened

about, frankly, destroying them.

Any insight, encouragement, thoughts, cautions, inspiration or whatever

comes to mind that you'd like to share with me will be so gratefully

embraced.

Thank you so much for all that you are, all that you do, and the way

all of you honestly (and more bravely than you realize) deal with your

challenges.

Prakasha

January 6, 2006

Prakasha, most of us have done exactly what you have done, I know I tried very

hard to avoid taking the conventional treatments by going with alternative

medicines. Sadly, during this period, I did a lot of damage to my joints that

may have been avoided. Then, again, some people get great results with

alternative meds. I have been on many, many different meds for 20+ years and

have never experienced any serious side affects. As long as your doctor makes

sure you are having regular labs done, any possible problems can normally be

caught in time. I am now on Enbrel & Mtx and 5mg Prednisone. Research the meds

that are prescribed but keep in mind, although the side affects shown are

downright scary, the manufacturer, must by law, show every single side affect

reported, even if it was only 2 or 3 people that were affected. There are many

new meds coming out and the future is looking brighter for patients to be able

to control and often go into remission from the different forms of arthritis.

I guess what I am saying in a round about way, is to embrace the future with

positive thoughts (hard to do, I admit) and keep in touch as you progress.

Hugs

June

January 6, 2006

Prakasha, you're eching the same fears that lots of others have voiced. I get

the feeling that most pay more attention to the possible side effects than the

good the medicine will/may do. There's not really any truth in possible side

effects as they are printed in materials that are available to us. There's no

percentage listed for each item on the list and no guarantee the possible side

effect is actually a result of the medicine.

I was in a clinical trial for a new pneumonia medication about a year ago. If my

nose itched (as it tends to do with one of my pain meds) and I reached to

scratch it, that was written down and added to the possible side effects. Your

only recourse at this time is to try it for yourself. All the meds that do me

wrong have been discovered in the first 2 weeks before any real damage could

occur.

Prednisone is an absolutely horrible medicine and nobody should be taking it!

That's what everybody says or is told, even by doctors. I've taken it and

enjoyed the benefits of it for 16 years and have had no adverse effects. My

doctor and I were having a conversation on Prednisone recently, and I asked him

what is bad about it since it's being good for me. He said I might have a stroke

or heart attack because of it. I countered with the idea that the double meat

cheeseburger I had that day might do it also. I suppose it could be said that

sleeping will definitely cause death for every one that's done it. Snapping my

fingers keeps elephants away from me. I haven't seen one on my farm yet, so it

must work.

OK, I'm too far gone, so I'll shut up now!

Dennis

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