Re: Newbie switching Meds...getting discouraged

[Guest guest]

Hi Sam, I sympathize with you totally. First thing I would recommend is

don't expect any of your family to understand, it's a tough disease to

understand for those of us suffering but for others it's impossible. How

can a person hurt so much and seemingly look ok? They can understand and

sympathize with a broken bone because many people have suffered this

themselves, but RA, it's beyond the scope of most people. Try not to blame

them for this. I heard things like, you've just gotten lazy, you have lost

your motivation, just try to do it or work through the pain, it'll go away.

lol Of course this was all WRONG but no one understood and I finally

quit caring if they understood. I had to understand, and care for myself.

Making excuses for having a nap or having a messy house takes too much of

your limited energy, just don't bother.

Now, you say you have 3 children under the age of 6, hmmmmmm, are you

getting proper rest? Our bodies require a certain amount of sleep in order

to maintain health, 7 - 8 hours uninterupted sleep, what most young moms

don't have the luxury of getting is what you need. Is it possibe for you to

get this?

Although Humira and Embrel work much the same the effects on individuals

does appear to be much different. There's alot of people in here will share

with you their experiences with this, I'll leave it to them.

The weight gain on prednizone is impossible to get around, it's one of those

" less than pleasing " side effects of prednizone, of which there are many.

Good you are reducing the amount, do this exactly as the doctor says since

coming off prednizone too quickly can be dangerous.

This disease does " stink " but what stinks more is that no one ever tries to

figure out the cause, therefore there is no hope for a cure.

Hopefully one day doctors will listen to their patients and start learning

from patients what the causes might be. I believe, as Harold mentions that

for each of us it could be a different cause and the only way to fight any

auto immune disorder is to figure out how to get the immune system back on

track......not block the pain and hope the damage is minimized.

Good luck to you Sam, I hope the Humira works better for you.

Dorey

www.LivingWithRheumatoidArthritis.com

----- Original Message -----

From: " twinsmomsam2000 " <samrocci@...>

<Rheumatoid Arthritis >

Sent: Sunday, June 05, 2005 10:19 PM

Subject: Newbie switching Meds...getting discouraged

> Hi everyone...

> I found your group while doing some web research this evening. I am

> 37 and coping with RA... I was first diagnosed in 1987. It went away

> for 13 years and then

> came back and kicked me in the butt after my last baby was born. It's

> been two years and I

> am getting discouraged. I have three little guys under 6 and it's a

> challenge to be a mom

> sometimes. It affects my knees, hands and most recently my feet and

> ankles... frankly it

> justplain stinks!! So far I have been on prednisone, methotrexate and

> Enbrel. Since the Enbrel

> is not working I am transitioning on to Humira in the next few weeks.

> Has anyone else

> hadany experience in going from Enbrel to Humira? They seem pretty

> similiar and I amunsure

> as to why my rheum. thinks Humira will work where Enbrel has not. I

> am also weaning off of

> the prednisone having been on it for over a year... my weight has

> ballooned and it is very

> stubbornly staying put! Anyone have any great predinsone diet

> tricks!?!?!

>

> I guess I am just looking for some understanding and support as I am

> the only one in my

> family who has RA and sometimes it seems as though no one else gets

> it. Some days it feels

> like if we all ignore it won't really be there and it's getting

> harder for me to ignore!

> Thanks for any words of wisdom you can pass along.

> Sam

>

>

>

>

>

>

>

>

>

[Guest guest]

The only diet trick to prednisone is getting

off of it....which is a very hard step to take. Weight gain is

something you have to live with if you want to feel somewhat better. My

weight went up from 115 to 180 on prednisone since 1992. I'm weaning

off of it but I don't see me getting off of it all together...since

I've been weaning down....my weight has stablilized at least...I do go

to the gym and walk 2 miles 3 times a week tho. You're not alone.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Maggie

http://www.4HockeyFans.com

http://www.4FloridaHockey.com

MSN: Maggies1429

AOL: Maggies85

I

am also weaning off of

the prednisone having been on it for over a year... my weight has

ballooned and it is very

stubbornly staying put! Anyone have any great predinsone diet

tricks!?!?!

[Guest guest]

Prednisone is the DEVIL... yes it is, for many reasons that would take a large textbook to list here.

That being said, it doesn't cause weight gain for absolutely everyone. There are exceptions. I'm 24 years old and I have been on prednisone since I was 12. I've taken anywhere from 10mg to 25mg every single day for twelve years.

I'm exactly five feet tall and I weigh 98 lbs. The most I have ever weighed in my life is 115 lbs.

I don't know why it is that prednisone didn't turn me into a cow, but I'm grateful. It did other things that were worse -- she says as the proud possessor of three titanium joints.

Jenni

[Guest guest]

Hi Sam and welcome to the group. I'm on Remicade which is similar to Enbrel and Humira but all three are different. The all work on the TNF of the immune system but they do it in different ways so one may be successful even though the others are not. If those don't work some people have success with Kineret that acts in a totally different way on the immune system. Also some people get help from Plaquenil and/or Sulfasalazine along with Methotrexate even though on average they are less effective than the biologics. However, nobody is average so for some people the drugs that are effective for one person may be those that on the average are less effective. Finding the right combination of drugs is a trial and error process and unfortunately it takes quite a while for a meaningful trial. God bless.

----- Original Message -----

From: twinsmomsam2000

Rheumatoid Arthritis

Sent: Sunday, June 05, 2005 10:19 PM

Subject: Newbie switching Meds...getting discouraged

Hi everyone...I found your group while doing some web research this evening. I am37 and coping with RA... I was first diagnosed in 1987. It went awayfor 13 years and thencame back and kicked me in the butt after my last baby was born. It'sbeen two years and I am getting discouraged. I have three little guys under 6 and it's achallenge to be a momsometimes. It affects my knees, hands and most recently my feet andankles... frankly it justplain stinks!! So far I have been on prednisone, methotrexate andEnbrel. Since the Enbrel is not working I am transitioning on to Humira in the next few weeks.Has anyone else hadany experience in going from Enbrel to Humira? They seem prettysimiliar and I amunsure as to why my rheum. thinks Humira will work where Enbrel has not. Iam also weaning off of the prednisone having been on it for over a year... my weight hasballooned and it is very stubbornly staying put! Anyone have any great predinsone diettricks!?!?!I guess I am just looking for some understanding and support as I amthe only one in my family who has RA and sometimes it seems as though no one else getsit. Some days it feels like if we all ignore it won't really be there and it's gettingharder for me to ignore!Thanks for any words of wisdom you can pass along.Sam

[Guest guest]

Oh... and while I'm at it. No, the reason for my tiny weight on prednisone has nothing to do with diet. I don't do any of the "NO" diets. You know those ones. No sugar no salt no meat no nightshade no dairy no wheat no fruit no no no... nothing that tastes good. You can't eat anything besides Swiss tofu sprouts or your arthritis will rise up and KILL YOU and then screw the dog and turn your socks pink.

Ha. There isn't really anything I don't eat. I like coffee and soda. I like chocolate. I really like red meat. I like Mc's.

Just lucky I guess. The odd thing is both my parents are a bit overweight so it apparently isn't a genetic thing either. I like to think Fate only has so much crap it can possibly hand out and it figured making me balloon up into a rolly polly hairball would just be too cruel on top of every thing else.

Nah.

[Guest guest]

----- Original Message -----

From: Jenni

>Oh... and while I'm at it. No, the reason for my tiny weight on prednisone has nothing to do with diet. I don't do any of the "NO" diets. You know those ones. No sugar no salt no meat no nightshade no dairy no wheat no fruit no no no... nothing that tastes good. You can't eat anything besides Swiss tofu sprouts or your arthritis will rise up and KILL YOU and then screw the dog and turn your socks pink.

I'm betting your age has something to do with it. Wait until you hit 40.

Nina

[Guest guest]

Hi Sam,

First welcome to all the Newbies, but Sam, I only have specific experience in

the question you asked so that's the only one I am going to answer!

I was on Enbrel for a little over 6 months. It helped but not enough and I

switched to Humira and as long as I take it, I am almost completely in

remission! Everyone is different, of course, but at least you have got a

testimonial!

Humira burns very badly when it is injected, though. Just want to prepare

you. I find that leaving it out about a half an hour before injecting helps and

injecting slowly, over the course of about 30 seconds or so, instead of

plunging it in all at once!

Good luck,

> Hi everyone...

> I found your group while doing some web research this evening. I am

> 37 and coping with RA... I was first diagnosed in 1987. It went away

> for 13 years and then

> came back and kicked me in the butt after my last baby was born. It's

> been two years and I

> am getting discouraged. I have three little guys under 6 and it's a

> challenge to be a mom

> sometimes. It affects my knees, hands and most recently my feet and

> ankles... frankly it

> justplain stinks!! So far I have been on prednisone, methotrexate and

> Enbrel. Since the Enbrel

> is not working I am transitioning on to Humira in the next few weeks.

> Has anyone else

> hadany experience in going from Enbrel to Humira? They seem pretty

> similiar and I amunsure

> as to why my rheum. thinks Humira will work where Enbrel has not. I

> am also weaning off of

> the prednisone having been on it for over a year... my weight has

> ballooned and it is very

> stubbornly staying put! Anyone have any great predinsone diet

> tricks!?!?!

>

> I guess I am just looking for some understanding and support as I am

> the only one in my

> family who has RA and sometimes it seems as though no one else gets

> it. Some days it feels

> like if we all ignore it won't really be there and it's getting

> harder for me to ignore!

> Thanks for any words of wisdom you can pass along.

> Sam

[Guest guest]

Jenna,

Hey, you are young! I had both knees replaced at the age of 22, I am now 49. I've had the right knee done 3 times, the left twice, and both hips done. My ankles are beyond repair and I wear braces!

Ray

----- Original Message -----

From: Jenni

Rheumatoid Arthritis

Sent: Monday, June 06, 2005 6:17 PM

Subject: Re: Newbie switching Meds...getting discouraged

Prednisone is the DEVIL... yes it is, for many reasons that would take a large textbook to list here.

That being said, it doesn't cause weight gain for absolutely everyone. There are exceptions. I'm 24 years old and I have been on prednisone since I was 12. I've taken anywhere from 10mg to 25mg every single day for twelve years.

I'm exactly five feet tall and I weigh 98 lbs. The most I have ever weighed in my life is 115 lbs.

I don't know why it is that prednisone didn't turn me into a cow, but I'm grateful. It did other things that were worse -- she says as the proud possessor of three titanium joints.

Jenni

[Guest guest]

You're right Jenni, I have another friend who went on prednizone for 6 months and he lost a ton of weight, very unusual but it made him lose his appetite and weight.

Dorey

----- Original Message -----

From: Jenni

Rheumatoid Arthritis

Sent: Monday, June 06, 2005 3:17 PM

Subject: Re: Newbie switching Meds...getting discouraged

Prednisone is the DEVIL... yes it is, for many reasons that would take a large textbook to list here.

That being said, it doesn't cause weight gain for absolutely everyone. There are exceptions. I'm 24 years old and I have been on prednisone since I was 12. I've taken anywhere from 10mg to 25mg every single day for twelve years.

I'm exactly five feet tall and I weigh 98 lbs. The most I have ever weighed in my life is 115 lbs.

I don't know why it is that prednisone didn't turn me into a cow, but I'm grateful. It did other things that were worse -- she says as the proud possessor of three titanium joints.

Jenni