Lori

[Guest guest]

Kathy,

I am having minor surgery at the end of next week, so I have decided to postpone

the diet until after that. We eat pretty healthy ( a lot of tofu, veges, very

little meat, etc.), but this diet will still be a pretty big change for me. I

am hoping that my husband will also participate. I've decided to ease into it

and start with the 3rd phase, then second, then first so that it's not such a

shock to the taste buds. Then I'll work my way back up. I really think that

the diet will help in dramatic ways. In little bit is worth it. I do want to

suggest something to you....I have just started making my own homemade ginger

ale and ginger tea from fresh ginger root, and I can really tell that it helps.

Ginger is one of nature's top antiinflammatories. If you're interested, I'll

post the recipe. (I am not using the recipe in the back of the book. I'm just

too nervous about the homemade whey thing! However, if you're going to try that

one, I have an easy recipe for homemade whey.)

My arthritis is kind of all over, with many joints being affected, but the worst

of it is in my right wrist, my knees, and my ankles and heels. I'm only on

Lodine (NSAID) right now, but am currently looking for another rhuemy who will

treat it more aggressively. I am slowly learning to cope with the pain on a day

by day basis. It sure has been a test of my character!!!! If you are going to

try the diet, I would like to compare notes with you and see how things are

going. I DO think that diet can make a BIG difference with RA, but there's no

$$ in it for drug companies, so there are very few clinical trials out there

testing these matters. It has really made me feel alone in my quest, but I know

that the Great Physician hears my prayers and knows more than any rhuematologist

will ever dream of, and that gives me hope! Let me know what you decide about

the diet!

~Lori~

[ ] Lori

Dear Lori,

I was so glad to find your letter on here.

I am new also. I'm 44, married 25 years, mom to three young adult sons and

just found out I probably have RA. I see a rheumy as soon as I can get into

one!!! I currently have an appt at the end of August with one but I'm trying to

find someone who can get me in sooner. I started this RA symptoms in April and

I don't want to wait til August.

I do believe diet and/or hormones have a big play in RA. I, too, am reading

" The Maker's Diet " !!! What do you think? Are you going to do any of it? I

think I'll try go for it but wow - it'll be a huge major change for me. My

grandma got ill with " rheumatism " after the birth of her last child. She

couldn't walk well and also could not use her hands as they were so painful.

They had to hire in help. No one knows what really happened but after a year or

two she got better and I never knew her to have anything except some osteo

arthritis in her knees. Something was going on with her hormones, I'm sure. I

just started menopause and I read a lot about women and menopause and RA - they

do connect somehow.

Please keep me posted on what you find out and what you are doing to treat

your RA. I'm on prednisone now (family doc) - 20 mg a day. I am trying to go

down to 10 but my hands hurt pretty bad when I do that. Where is your pain?

Hugs,

Kath

joyfulkate60@...<mailto:joyfulkate60@...>

Hi all,

My name is Lori, and I had a rapid onset case of RA 6 months ago when my first

child was a month and half old. This disease has been the biggest challenge of

my life. I first saw a quack doctor at UNC in Chapel Hill, then went to a

standard rheumatologist in Raleigh. He hasn't been much help either. His only

solution was to give me steroid injections and to put me on Lodine (NSAID). I

had to beg him to give me a rx for DMARDS. I have begun to try various diets as

well. I went through the elimination diet, and found that tomatoes made me

flare up so that I couldn't move. I saw an allergist (I didn't tell him my

theory at first) and he confirmed that I was allergic to tomatoes and oats. Has

anyone else looked into the link between RA and allergies? I have just finished

reading The Maker's Diet by ??? Rubin. I'm wondering if anyone has had any

success with these types of diet changes or if I'm merely wasting my t! ime. I

feel as though there are no good rheumatologists around, and that swimming

around in the sea of internet medical jargin alone. My husband loves me very

much, and is completely supportive, but as I am consumed with getting over this

disease, it's hard for him to hear about it all the time. I have never been so

lonely in all my life!!! Can anyone offer any suggestions?

[Guest guest]

[ ] Lori

Dear Lori,

I was so glad to find your letter on here.

I am new also. I'm 44, married 25 years, mom to three young adult sons and

just found out I probably have RA. I see a rheumy as soon as I can get into

one!!! I currently have an appt at the end of August with one but I'm trying to

find someone who can get me in sooner. I started this RA symptoms in April and

I don't want to wait til August.

I do believe diet and/or hormones have a big play in RA. I, too, am reading

" The Maker's Diet " !!! What do you think? Are you going to do any of it? I

think I'll try go for it but wow - it'll be a huge major change for me. My

grandma got ill with " rheumatism " after the birth of her last child. She

couldn't walk well and also could not use her hands as they were so painful.

They had to hire in help. No one knows what really happened but after a year or

two she got better and I never knew her to have anything except some osteo

arthritis in her knees. Something was going on with her hormones, I'm sure. I

just started menopause and I read a lot about women and menopause and RA - they

do connect somehow.

Please keep me posted on what you find out and what you are doing to treat

your RA. I'm on prednisone now (family doc) - 20 mg a day. I am trying to go

down to 10 but my hands hurt pretty bad when I do that. Where is your pain?

Hugs,

Kath

joyfulkate60@...<mailto:joyfulkate60@...>

Hi all,

My name is Lori, and I had a rapid onset case of RA 6 months ago when my first

child was a month and half old. This disease has been the biggest challenge of

my life. I first saw a quack doctor at UNC in Chapel Hill, then went to a

standard rheumatologist in Raleigh. He hasn't been much help either. His only

solution was to give me steroid injections and to put me on Lodine (NSAID). I

had to beg him to give me a rx for DMARDS. I have begun to try various diets as

well. I went through the elimination diet, and found that tomatoes made me

flare up so that I couldn't move. I saw an allergist (I didn't tell him my

theory at first) and he confirmed that I was allergic to tomatoes and oats. Has

anyone else looked into the link between RA and allergies? I have just finished

reading The Maker's Diet by ??? Rubin. I'm wondering if anyone has had any

success with these types of diet changes or if I'm merely wasting my t! ime. I

feel as though there are no good rheumatologists around, and that swimming

around in the sea of internet medical jargin alone. My husband loves me very

much, and is completely supportive, but as I am consumed with getting over this

disease, it's hard for him to hear about it all the time. I have never been so

lonely in all my life!!! Can anyone offer any suggestions?

[Guest guest]

--- In , " Lori McKinley " <lmckinley@n...>

wrote:

Hi Lori - thanks so much for that tip about ginger root. I have

researched the internet and found a couple of herbs which might help

me, such as Dandelion ( sorry mind blank at present over the

others:). But when it came to finding them fresh, at the supermarket

it was a real no no.

Just recently I have cut out aspartme and artifical sweetners, and

now drinking filtered water.

I used to drink a lot of diet drinks, so that was stopped (and miss

them sorely) but I love ginger beer, and your recipe on homemade

ginger ale and ginger tea would be most welcome.

All the best - Carole

~~~

> Kathy,

>

> I am having minor surgery at the end of next week, so I have

decided to postpone the diet until after that. We eat pretty

healthy ( a lot of tofu, veges, very little meat, etc.), but this

diet will still be a pretty big change for me. I am hoping that my

husband will also participate. I've decided to ease into it and

start with the 3rd phase, then second, then first so that it's not

such a shock to the taste buds. Then I'll work my way back up. I

really think that the diet will help in dramatic ways. In little

bit is worth it. I do want to suggest something to you....I have

just started making my own homemade ginger ale and ginger tea from

fresh ginger root, and I can really tell that it helps. Ginger is

one of nature's top antiinflammatories. If you're interested, I'll

post the recipe.

[Guest guest]

I just mean for the day of the flush. I have to skip fats today,

yes?

I have had about 2grams for breadfast (a piece of plain bread, a can

of corn, a can of greenbeans, a bit of nonfat organic milk) but hope

to stick to fresh fruits after this. This is hard.

~F.

[Guest guest]

Hi Lori:

I was up to 20 mg. of Mtx at one time, but when I

began doing better with the addition of Enbrel,

actually was almost in remission I felt so good, my

doctor decided to try and wean me off my Mtx. Went

down to 10 mg. before the Ra flared up again, and

since that time I have gone back up to 12.5. Now with

the way I have been feeling for the past week, I

wonder if we don't need to go up again to 15 - we

shall see.

Unfortunately, there is never NO pain. I have pain on

a daily basis, the degree of pain varies and the

location of the pain varies somewhat, although the

tops of my feet (left more so), my knees, hips, elbows

and wrists are pretty much constant in some degree or

another. Walking is always difficult, but once the

initial 15 minutes or so of hobbling, I can walk

pretty good, until I sit again for any length of time,

and then the hobbling begins again.

This disease is so horrible, and no know that it is

affecting your 13 year old daughter in such a way, and

stealing her hair, her link to other girls her age

because I know hair is soooo important, is just awful.

Maybe there are extensions which can be weaved into

the hair she has left? I just kind of do what men do,

and flip most of my " bangs " or what used to pass for

the front of my hair, over to one side and cover the

thinness. There is stil obvious very high hair loss

in the more typical male pattern along the sides of

the top, but I fancy that I am doing a pretty good job

of wroking with it. At least I have wavy hair

naturally so I use the messy, wavy look quite a bit

lol.

Even with the blood work looking great, you can still

have pain, unfortuantely, which just means the the

disease is still active to that degree which registers

pain, but not increased lab results. I do believe

that 25 mg. MTX is the top of the level for that med.

Have they spoken to you about the newer biologics that

work in a slightly different way than the Enbrel, like

Rituxan or Orencia? I don't believe the need Mtx to

work better, but or a would know best about

that.

Again, my heart goes out to you and your daughter.

Having a 19 year old daughter, who takes a lot of

pride in her hair, I know how much emotional pain your

daughter must be going through, just something else to

make her " different " from her peers, and it just

breaks my heart to hear it, and I must applaud you for

the strong and loving mother you are to be here trying

to get help for her - I did everything in my power

when my son was so very ill for many years, and I know

of a mom's devotion and fight for their child. Bless

you and your daughter - my prayers are with you.

Kathe in CA

--- Lori Maynard <lorimaynard@...> wrote:

> Kathe,

>

> You asked if the MTX and Humira is working well for

> her RA. I don't really

> know how to answer that. I would say yes, according

> to her labs, but she

> really isn't feeling great. She is always in pain

> and always has trouble

> going up stairs. Her hands and back always hurt and

> her knees and feet hurt

> most of the time. Sometimes she limps (like today).

> However both her RF

> and sed rates are down to normal after being sky

> high. So as far as our

> rheumatologist is concerned, she is doing well.

> ly, I don't know what

> my expectations should be.

>

> How much MTX do you take? She's been taking the

> full 100 unit syringe of 25

> mg each week and 1 mg folic acid.

>

> Lori

>

>

>

>

> age - how awful for her.

>

> Is the Mtx and Humira working well for her RA? I am

> on Enbrel and Mtx, have tried to do without one or

> the

> other, only to find that I need the combo to have

> relief of my RA.

>

>

>

>

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