Remission

[Guest guest]

I couldn't agree more. I belong to another support group (related to a totally

different issue) and one of the things we emphasize is the need to always be

grateful for the good things while we struggle with the bad. Keeping a

gratitude journal is really helpful, i.e. jotting down 5 things every day that

you can be grateful for. Sometimes when things are really rough, it may come

down to having a roof over your head to keep you warm (or cool as the case may

be) and food to eat on that particular day - or even feeling the pain because it

means you will live to see another day that may be better. Thanks for reminding

us . . . . . .

Joanna Hoelscher

630-833-7361

[ ] Remission

Carol,

I am glad to hear that you are going into remission.

[Guest guest]

As one of you wrote me, yes I mistyped.........MAJOR typo.   I meant to say a

cure is very close to being on the market for those of  us with PBC,  and I feel

one for AIH is close also.  Joanne           sorry!!!!!!!!!!!!

"  I am sure a cure is soon to come.and they are very close no for PBC.  and AIH

should surely come soon afterwards.   Joane "

 

Joanne:  Is this a misprint: 'no for PBC. and AIH.......come soon'??  Did you

you mean to write 'to' instead of no? If that  is the case Yippee!  Where did

you read that???? etc..........

[Guest guest]

My kids have been med free for 14 months since changing their diet. Sometimes

people go into remission for periods of time. Just keep praying that it lasts

and enjoy the time while it's here.

Myndi

Sent from my Verizon Wireless BlackBerry

[Guest guest]

So happy to hear your kids are in remission!!! Just curious of what kind of diet

are they on? I was diagnosed with Reiter's 6 months ago and I don't like to take

my meds because of all the bad side effects they have. I'm currently on

Plaquenil, Methotrexate and occasionally I take Indomethacin. I take them

because I have noticed an improvement with the stiffness of my neck. But I'm

still suffering heel pain, sausage toes and a burning sensation on my feet

since all this started back in July 2009. Thanks.

Sent via BlackBerry from T-Mobile

Re: remission

My kids have been med free for 14 months since changing their diet. Sometimes

people go into remission for periods of time. Just keep praying that it lasts

and enjoy the time while it's here.

Myndi

Sent from my Verizon Wireless BlackBerry

[Guest guest]

Myndi,

Thats fantastic.

What changes in their diets have resulted in this phenomenal recovery?

Please let us know.

Thanks!

 

________________________________

From: " the7fitzs@... " <the7fitzs@...>

Sent: Sat, January 23, 2010 5:56:21 PM

Subject: Re: remission

 

My kids have been med free for 14 months since changing their diet. Sometimes

people go into remission for periods of time. Just keep praying that it lasts

and enjoy the time while it's here.

Myndi

Sent from my Verizon Wireless BlackBerry

[Guest guest]

My first was when I was 24 and lasted about 11 months. With a few

exceptions of iritis and aches and pains I've been in remission ever

since. I'm now 51.

Yes, it can happen.

Rick Hahn

Rick@...

On Jan 23, 2010, at 11:11 AM, " rhelwigjr " <rhelwigjr@...> wrote

>> Am I being stupid trying to live without meds. or is there reason

to think that maybe I'm done with the suffering. I have had ReA for 24

years and am 54 yrs. old. Thanks,

>

>

>

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

>

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

> Post message:

>

> Set your subscription to digest (one email a day)

/

>

> Contributions to RISG.ORG are tax deductible. Credit Card or PayPal

> http://www.risg.org/contributions.htm

>

> You're Not Alone!

> http://www.risg.org

[Guest guest]

Sorry it's taken me so long to reply...we were out of town at NIH in DC at a

medical study.

We started taking a nutritional supplement which alleviated all of my kids'

arthritis symptoms. Since that time we also started researching the role of

nutrition in our health. We have gone as organic as we can when we can afford

it. This has helped them tremendously. I believe that all of our bodies are

overloaded with toxins (especially those with the autoimmune issues). Anything

we can do to lower those toxins will help our bodies. I also have eliminated as

much of the cleaning products as I can and almost only use Natural cleaning

products now as well. We also buy as much of our meats as we can from a local

farmer who raises all of their animals on a pasture so they are range free and

grass fed. I would highly suggest that you read the book and watch the movie

Food Inc. It was very informative as to what we are putting in our bodies.

When you think about it, it does make sense that our bodies would work better if

we fed them better. It's

just like changing the oil in the car. If we don't service our cars, they

don't work. I think that most of our doctors aren't suggesting this to us

because they aren't educated in the role of nutrition themselves. I believe

they take one introductory nutrition class in their educations. Since we've

been focusing on nutrition, our docs (especially the Rhuemy) have been very

supportive of it. It's just unfortunate that they didn't point us in that

direction in the first place. Hopefully that will change. I do notice that the

nutrition seminar at the Juvenile Arthritis Conferences are standing room only

now compared to just a few people attending a couple of years ago. The crowd

gets bigger and bigger every year as people are catching on to the power of good

nutrition.

Hope this helps!

Myndi Fitzgerald

Ph: 317-503-3701

www.TheGreatProduct.com/gmfitz

Drink It. Feel It. Share It.

________________________________

From: Mr O <mro71@...>

Sent: Sat, January 23, 2010 7:48:46 PM

Subject: Re: remission

Myndi,

Thats fantastic.

What changes in their diets have resulted in this phenomenal recovery?

Please let us know.

Thanks!

____________ _________ _________ __

From: " the7fitzs (DOT) com " <the7fitzs (DOT) com>

groups (DOT) com

Sent: Sat, January 23, 2010 5:56:21 PM

Subject: Re: remission

My kids have been med free for 14 months since changing their diet. Sometimes

people go into remission for periods of time. Just keep praying that it lasts

and enjoy the time while it's here.

Myndi

Sent from my Verizon Wireless BlackBerry

[Guest guest]

Hi ! I just sent a message out about our nutritional changes, but would

be happy to get into more detail with it if you want more info. Just contact

me. My kids have Ankylosing Spondylitis, not Reiter's. However, the

nutritional changes have helped others that I know with different forms of

arthritis including Rheumatoid. It's all about feeding the body what it needs

to work right.

Myndi Fitzgerald

Ph: 317-503-3701

www.TheGreatProduct.com/gmfitz

Drink It. Feel It. Share It.

________________________________

From: " leslygrcia@... " <leslygrcia@...>

Sent: Sat, January 23, 2010 7:47:52 PM

Subject: Re: remission

So happy to hear your kids are in remission!!! Just curious of what kind of diet

are they on? I was diagnosed with Reiter's 6 months ago and I don't like to take

my meds because of all the bad side effects they have. I'm currently on

Plaquenil, Methotrexate and occasionally I take Indomethacin. I take them

because I have noticed an improvement with the stiffness of my neck. But I'm

still suffering heel pain, sausage toes and a burning sensation on my feet

since all this started back in July 2009. Thanks.

Sent via BlackBerry from T-Mobile

Re: remission

My kids have been med free for 14 months since changing their diet. Sometimes

people go into remission for periods of time. Just keep praying that it lasts

and enjoy the time while it's here.

Myndi

Sent from my Verizon Wireless BlackBerry

[Guest guest]

Hi Janine.

    What meds. are you taking for your RA?  What an awful response.....LIVE

WITH IT????  I have been in my medicine induced remission for almost 1  1/2

years now.  I am pain free and only one small flare that only lasted a few

days.  My Rheumy upped my Pred. from 5mg. a day, to 10 mg. a day.  I am still

on the 10 mg. a day but will begin to go down to my original dose of 5 mg. a

day.

     I look forward to talking with you again.

 

Hugs,

 

Barbara

From: Janine <Raabster@...>

Subject: [ ] Remission

Date: Friday, September 3, 2010, 10:37 PM

 

I was curious how others experience remission. I was hopeful I would return to

normal most of the time. This past month I have felt pain 90% of the time. I

called my rheumy Dr. today and the the nurse told me I need to learn to live

with the discomfort. I have been on methotrexate for 3 months now and have more

joint pain then ever before.

Thank you for your thoughts, I have learned so much here.

Janine Raab

[Guest guest]

Hi Janine,

I too feel pain most of the time. The flare-ups last about a week and happen

about once a month. But the chronic pain is constant. My Rheumy says I

continue to have " significant inflammation. " The key has been the Prednisone.

However, I can't seem to go below 10mg. (currently on 15mg). Remission? Not

sure what that is at this point.

Shanyka in CA

Sent from my HTC on the Now Network from Sprint!

Sent from my HTC on the Now Network from Sprint!

[Guest guest]

hi shanyka,

all your ails and woes,..lol.. it sounds just like me. i have the

severe OA and RA, degenerative disc disease,.... the chronic pain

that is always with me.... today my knee is so bad, can hardly walk.

i have been on prednisone before, the whle thing with high doses, then

down to lower. right now i am on 5mg a day. it has helped me some....

but not enough. there is still so much swelling in my fingers, haven't

been able to bend my fingers in forever.. my hands hurt so bad, but i

still have to cook, clean.... you know... my family here just don't

want to hear about my pain. so, i keep on .....

i wonder if maybe a higher dose of the prenisone will help. i hate to

take it everyday, but dr. says not to worry about it..... how long

have you been taking it ?? is it safe to take everyday ??

wishing you good days, hon....

betty

On 9/4/10, shanyka_else@... <shanyka_else@...> wrote:

> Hi Janine,

>

> I too feel pain most of the time. The flare-ups last about a week and

> happen about once a month. But the chronic pain is constant. My Rheumy

> says I continue to have " significant inflammation. " The key has been the

> Prednisone. However, I can't seem to go below 10mg. (currently on 15mg).

> Remission? Not sure what that is at this point.

>

> Shanyka in CA

>

> Sent from my HTC on the Now Network from Sprint!

>

> Sent from my HTC on the Now Network from Sprint!

>

>

[Guest guest]

Hi Betty.

     So sorry you are suffering so much with your RA.  I have been on Pred.

daily for over 6 1/2 years now.  I am on 10 mg now  but will go back to my

original 5 mg. daily.  My blood work is always good and my Rheumy says I am

fine on it.  I would have no life without it, and my RA " cocktail " .  I feel

good and have been in a medicine induced remission for almost 2 years now.

If your Rheumy says you are fine on the Pred. then continue taking it. 

Sometimes uping the dose to 10 mg or 20 mgs. a day will help the swelling go

down and the pain go away.  You should talk all this over with your Rheumy and

do what she says you need to do to get feeling better and have a life.

    I wish you many pain free days ahead.

 

Hugs,

 

Barbara

> Hi Janine,

>

> I too feel pain most of the time. The flare-ups last about a week and

> happen about once a month. But the chronic pain is constant. My Rheumy

> says I continue to have " significant inflammation. " The key has been the

> Prednisone. However, I can't seem to go below 10mg. (currently on 15mg).

> Remission? Not sure what that is at this point.

>

> Shanyka in CA

>

> Sent from my HTC on the Now Network from Sprint!

>

> Sent from my HTC on the Now Network from Sprint!

>

>

[Guest guest]

Hi ,

I'm sorry to here Prednisone gave you adverse effects. I couldn't imagine the

severe pain I'd have without it. But a lot of people not on Prednisone do well

with some forms of biologics. I guess it depends on the person.

Feel better,

Shanyka in CA

Sent from my HTC on the Now Network from Sprint!

Sent from my HTC on the Now Network from Sprint!

[Guest guest]

In a message dated 9/4/2010 6:06:04 P.M. Central Daylight Time,

shanyka_else@... writes:

I'm sure it seems like I have that " woe is me " attitude lol. I can see

where it seems like it. But I see that a lot of us are experiencing the same

problems.

Well I certainly hope it's safe to take prednisone every day. I've been

taking it everyday for the past four months. >

I was told by a different doctor for a different problem that if the dose

is 5 mg or less, the body will not stop making its own cortisol. I'm sure it

varies, however.

dd

[Guest guest]

I think it's a good question to ask - I wonder too. I have almost the same story as you but it was about 2 years ago. From what I have been reading from the members of this group as well as what the doctors tell me this is a lifetime disease. You really only have to courses of action...1) aspirin desensitization (you will end up taking ~600 mg of aspirin every day) or an alternative that is better on the stomach, or 2) treatment of the condition which involves occasional steroid use to reduce polyps when they get too large (say 2-8 times per year) and occasional surgery (say every 1 to 5 years) to remove them when they become unmanageable. The growth can be slowed down and your breathing can be improved by using a variety of treatments such as nasal wash and the drugs you are taking already. I have found Fluticonase to be the best for me. Also highly recommended to improve your overall immune system is fish oil (omega 3+) 2000 mg/day and vitamin D3 2000 iu/day. Exercise helps clear the passageways and makes you feel better but keep the Albuteral or Xopenex handy in case it causes an acute asthma attack. 

I am not a doctor, I am just rephrasing a few months worth of monitoring this group. I didn't mention a few alternatives that have been discussed - you'll have to search through the archives. 

You have come to the right place for your condition. From what I can tell, this group as a body of knowledge is the best resource you have. On Fri, Oct 1, 2010 at 7:41 AM, rdawson5656 <rdawson5656@...> wrote:

 

Hello, I am an adult male aged 55.

I have been asthmatic and allergic to a number of things e.g. hayfever etc for many years.

However about 18 months ago I suffered severe rhinitis which developed into nasal polyps and I found that I was sensitive to aspirin-samter's triad.

I had nasal surgery earlier this year for polyp removal and am now taking inhaled steroid for asthma and nasonex for rhinitis to try and hold back regrowth of polyps. In effect,the disease is being treated symptomatically rather than getting to the root cause of it

Given that the full-blown symptoms of samter's seemed to come on suddenly about 18 months ago I am wondering if other people have any experience that the condition can go into remission or if once one has it one is in effect stuck with it for ever?

I wonder if any posters here have any thoughts?

I'm sorry if this has been raised before but I am new to this forum.

[Guest guest]

RDawson,Sam wrote a good summary to which I will not add much, except to say that I do not think Samter's can be cured now because is genetic in origin - at least there is an underlying genetic component, which cannot be modified for the time being. The best one can do is to contain it with more or less success. I have read only one article reporting 3 patients being "cured", but I have doubts about whether the purported cure was not in fact rather the condition going low-key for a long while.> > >> >> > Hello, I am an adult male aged 55.> >> > I have been asthmatic and allergic to a number of things e.g. hayfever etc> > for many years.> >> > However about 18 months ago I suffered severe rhinitis which developed into> > nasal polyps and I found that I was sensitive to aspirin-samter's triad.> >> > I had nasal surgery earlier this year for polyp removal and am now taking> > inhaled steroid for asthma and nasonex for rhinitis to try and hold back> > regrowth of polyps. In effect,the disease is being treated symptomatically> > rather than getting to the root cause of it> >> > Given that the full-blown symptoms of samter's seemed to come on suddenly> > about 18 months ago I am wondering if other people have any experience that> > the condition can go into remission or if once one has it one is in effect> > stuck with it for ever?> >> > I wonder if any posters here have any thoughts?> >> > I'm sorry if this has been raised before but I am new to this forum.> >> > > >>