RE: Another Enbrel question

[Guest guest]

Tom, I've not heard anybody talk about decreasing Enbrel so not sure what to

tell you. However, I am curious if you think weather plays a significant role

in your latest flare. I am having the worst flare of P I have ever had and it

came with the winter weather here in eastern Washington. Cheri

tr1rt <tr1rt@...> wrote:

My derm wants me to start backing down on the Enbrel dosage to see if I can

handle that.

My question is- has this worked for anoyone out there on Enbrel? After the major

flare that

I went through that got me on the Enbrel I am a little concerned about backing

down the

dose and having another flare up. He (derm) says to give it a try and if it

doesn't work to

go back up... easy for him to say, he doesn't have put up with the pain and

swelling if he

is wrong!

Tom in Anchorage

btw did I mention that it was zero degrees in Ancorage today!! brrr

[Guest guest]

In a message dated 11/3/2004 6:00:07 AM Eastern Standard Time,

tr1rt@... writes:

Tom in Anchorage

btw did I mention that it was zero degrees in Ancorage today!! brrr

Boy, that weather is enough to make your joints ache. I took the lower dose

for 6 months and it did not help me with the pains. I am now taking the

50mg and have taken 3 injections. So I think it may be taking some of the edge

off. I guess I have to give it a while to work.

Janet

[Guest guest]

I have reduced my Enbrel several times over the past five years. I was even

in remission for a year and a half. Usually I will go from one 25mg

injection twice a week to once a week. Then one injection every two weeks.

Then every three until I stop altogether. About six months ago I had to

start Enbrel again after a flare. Right now I am doing one injection every

two weeks. I may be able to stop again soon. Enbrel is a wonderful thing.

I truly believe that if I would have started it with my first swollen joint

I may have stopped the disease from progressing altogether. Now I seem to

play tag with it.

[ ] Another Enbrel question

My derm wants me to start backing down on the Enbrel dosage to see if I can

handle that.

My question is- has this worked for anoyone out there on Enbrel? After the

major flare that

I went through that got me on the Enbrel I am a little concerned about

backing down the

dose and having another flare up. He (derm) says to give it a try and if it

doesn't work to

go back up... easy for him to say, he doesn't have put up with the pain and

swelling if he

is wrong!

Tom in Anchorage

btw did I mention that it was zero degrees in Ancorage today!! brrr

[Guest guest]

Hi,

I'm real new to this group..just been reading and trying figure out the slang..

I have had PA for a little over 10 years

I took Vioxx for a while which seemed to help, but you all know what that lead

to. Is is possible to have a remission?

I have many health issues including Thyroid which means I already carry extra

weight. I stay so tired all the time..

My GP doesn't seem to know what to do..Any suggestions?

Carol

[Editor's Note: Hi, Carol. Please let us know what slang gives you trouble and

we'll translate it into English, LOL. The one thing that really bothers me from

your post is that you have had PA for 10 years but your GP doesn't know what to

do. I hope you have also been under the care of a rheumatologist. A GP is NOT

an expert on PA just as a GP is not an expert on gynecology. They are a good

first stop but not a good last stop. In addition, if you have had a number of

issues going on, perhaps it is because the medication you have been on has not

really been helping you. There are many other medications for treating not just

PA but a host of other things. I know that many of our list members also suffer

from hypo and hyper thyroid problems so perhaps you can tell us more about

what's going on with you so that the list can share their experiences. Welcome

board and best wishes, Kathy F.]

RE: [ ] Another Enbrel question

I have reduced my Enbrel several times over the past five years. I was even

in remission for a year and a half. Usually I will go from one 25mg

injection twice a week to once a week. Then one injection every two weeks.

Then every three until I stop altogether. About six months ago I had to

start Enbrel again after a flare. Right now I am doing one injection every

two weeks. I may be able to stop again soon. Enbrel is a wonderful thing.

I truly believe that if I would have started it with my first swollen joint

I may have stopped the disease from progressing altogether. Now I seem to

play tag with it.

[Guest guest]

In a message dated 11/4/2004 1:56:53 PM Eastern Standard Time,

AMckenzie@... writes:

I have many health issues including Thyroid which means I already carry

extra weight. I stay so tired all the time..

Hi Carol, I have hypothyroid too and I saw an endocrinologist at Mayo who

really helped...he said that normally the T4 measurement is supposed to be

between 1 and 5 (approx, I can't remember exactly) and that most doctors make

sure your meds put you in that range, but that he has found that most of his

patients feel better when they are at the lower end of the range. Mine now

runs

about 1.25 and I feel much better than when it ran closer to 5...it may be

worth asking your endocrinologist.

Also, in general, people with autoimmune disease tend to have low levels of

folic acid, I take 2 each 400 mcg per day, plus a multivitamin, and that

really seems to help with the fatigue. The folic acid pills are really small

and

easy to take, and I actually take a children's multi because I told my rheumy

I wasn't taking my vitamins because I couldn't stand the thought of one more

pill, so she said to buy chewable children's vitamins:-)

Another thing you might want to have checked is your iron level and your

B-12 level. I also have something called pernicious anemia which is also

autoimmune that prohibits me from absorbing B12 from food...without B12 you

can't

absorb iron, and that can also lead to fatigue. Even now that I get B12

shots, I still wasn't absorbing enough iron so I am on a prescription form

which

is easier for the body to absorb.

Just some things to ask your dr about...the fatigue for me used to be

debilitating and is mostly now under control, but it took a lot of time and

tests

and meds to get to this place!

[Guest guest]

Enbrel was a miracle for me from the first injection. Unfortunately it is

about 50% effective for RA and maybe a little more for PA in general

according to what I have read. That is more than very good as treatments go

for PA or other autoimmune disease. I was lucky and had a great response.

It simply may not be your drug. Have you considered trying another TNF drug?

Five months seems long enough.

[Editor's Note: Ron's right, Donna. Most medications work within 3-4 months if

they are going to work at all. There are other things to try, including the

newest biologic, Humira, and the " old faithful " Remicade. Please talk to your

rheumy/dermy about switching if you feel the Enbrel is not working for you. Good

luck, Kathy F.]

Re: [ ] Another Enbrel question

ok guys I have been on enbrel for about 4 to 5 months

now. two shots a week. no improvement in my psorasis

at all. i was on remicade for 4 years. i did do mtx

and it did well except for my liver so had to stop

that. i am flared up everywhere imaninable. please

give me some feed back as i am at my wiits end Donna

[Guest guest]

I have many health issues including Thyroid which means I already carry

extra weight. I stay so tired all the time..

Hi Carol, I have hypothyroid too and I saw an endocrinologist at Mayo who

really helped...he said that normally the T4 measurement is supposed to be

between 1 and 5 (approx, I can't remember exactly) and that most doctors make

sure your meds put you in that range, but that he has found that most of his

patients feel better when they are at the lower end of the range. Mine now

runs

about 1.25 and I feel much better than when it ran closer to 5...it may be

worth asking your endocrinologist.

Also, in general, people with autoimmune disease tend to have low levels of

folic acid, I take 2 each 400 mcg per day, plus a multivitamin, and that

really seems to help with the fatigue. The folic acid pills are really small

and

easy to take, and I actually take a children's multi because I told my rheumy

I wasn't taking my vitamins because I couldn't stand the thought of one more

pill, so she said to buy chewable children's vitamins:-)

Another thing you might want to have checked is your iron level and your

B-12 level. I also have something called pernicious anemia which is also

autoimmune that prohibits me from absorbing B12 from food...without B12 you

can't

absorb iron, and that can also lead to fatigue. Even now that I get B12

shots, I still wasn't absorbing enough iron so I am on a prescription form

which

is easier for the body to absorb.

Just some things to ask your dr about...the fatigue for me used to be

debilitating and is mostly now under control, but it took a lot of time and

tests

and meds to get to this place!

Hi Again ,

I live in a very small town it is GP or nothing.. I no longer have a Thyriod

gland .I had to have it removed..I will be 55 very soon (Heaven help me). My dr

seems to think there is little I can do.

I am on NO MEDS right now. I still work a 40 hour week on concrete floors on

my feet 8 hours a day. By the end of my shift I am so tired I worry about

driving home.Seems my joints " Flare " on the days I am most tired. I worry about

the Dr. trying to help it always seems to make things worse. I didn't mean this

to be a book..I just don't have a venting place.

Carol