Re: RISG-Enbrel+Methotrexate

[Guest guest]

Brie,

Sounds like Texas needs a good shaking.

As far as your internist - there are medical books available

and drug companies provide dosage recommendations, etc. It

seems remarkable that your doctor would simply ask other

patients what they are taking just to gauge your dosage.

Aside from that. Don't know if weight/size makes a difference.

But, my rheumy has described to me that 15 mg MTX is the

'standard' maintenance dose. She generally starts with 10mg

because your body can and does have a reaction to it. If you

have a reaction, she backs off to 5 mg. Then she keeps you at

that dose for awhile - maybe 2 months? - before increasing it

5 mg at a time until your condition stabelizes or even improves.

That's a weekly dose and it takes 6 weeks on one dose to tell

how it is affecting you.

I started on 10mg for 2 months and it had little effect. She raised

it to 15 mg for another 2 months and had a slight effect. She raised

it to 20mg and I had an amazing improvement, but I still had

mini-flares. I was on 20mg for about 6 months and had a lingering

flare so she raised it to 25mg. The literature states

that 30mg can be given for arthritis, but only in the short-term.

Even though after 4 months on 25mg, I was still having spotty

difficulty, my doc preferred not to give 30mg because she felt the

toxicity begins hitting more severely then. So, I have now been

on 25mg for over a year and I have gradually improved. I still have

an occasional mini-flare, but much less problematic than before.

My doc has indicated that her goal is to eventually get me down to

15mg mainenance and she wants to lower my dose down to 20mg " soon " .

But, she doesn't feel that I am truly stable enough to do this yet.

Meaning, she is cautious about 25mg being a 'high' dose in her

opinion and she has concerns about toxicity, but she feels that

as long as my blood tests are ok, she prefers to keep symptoms

under control. I now get blood tests every two months. At first,

I got them weekly for the first 2 months, then monthly until I

was on the 25 mg for about 4 months with no changes, so now I'm

on bi-monthly.

BRIEALLEN@... wrote:

> Hi all:

> Today I have a question for those on Enbrel and Methotrexate. How much

--

kjg@...

Canberra, ACT Australia

[Guest guest]

Brie, How are you doing on the methotrexate? It made me itch all over. I am

one of those in my 50's, and I feel 85. I was also put on Arava, and that

didn't just make me itch, I got back my migraine headaches, and It went

inside and made me bleed, get lung problems, etc. Now he wants to try

enabrel, and I am very leery to have that injection put into me. I live

alone, so if I go into shock or something, there is no one here to call 911.

I do better on prednizone too, but the Doc says I've been on it too many

times and too long. Also, I am afraid of what this meds jumping will finish

off my last kidney, which is not doing well at all these days. What do you

think? And what do all of you out there in the group think? I know that the

prednizone helps the pain, and hasn't done much damage on the kidney. I need

input, I go to that Doc next Tuesday-Jan 14th. Thanks! EFD

[Guest guest]

In a message dated 1/11/03 4:38:06 PM, EFD1@... writes:

<< I do better on prednizone too, but the Doc says I've been on it too many

times and too long >>

How much were you taking and for how long?

Pris

Check out our ten step program for aggression in house pigs

in our behaviorial book at

http://valentinesperformingpigs.com/trainingbook.html

[Guest guest]

According to my rheumy, Enbrel is safer than Arava. My rheumy won't

prescribe Arava.

[Guest guest]

I had to be taken off Arava because it made my liver enzymes go nuts.

I've been on Remmy for 8 months or so and I think it is starting to have

adverse effects too...I get so tired of all this....And they can't get

their heads straight as to info on the drugs--one says Enbrel and Remmy

are equally safe.. One says no Enbrel is safer.. Another says Humira is

safest of all.. another says no no Humira is just as dangerous as Enbrel..

AYYYYYYYYYYYYYYY!!!!!!!!!!!!!!!

On Mon, 13 Jan 2003, , Janet wrote:

> According to my rheumy, Enbrel is safer than Arava. My rheumy won't

> prescribe Arava.

>

Liz

~~~

" I've learned that people will forget what you said, people will forget

what you did, but people will never forget how you made them feel. "

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

EMAIL: juliette@... **ICQ 49746198** MSN & AIM LizKP1952**

PERSONAL HOMEPAGE PAGE http://members.tripod.com/~LizK

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[Guest guest]

Liz, the drugs we have to take are not without side effects and they should

not be given to us as " completely safe. " I can't think of one drug that is

without some side effect or would be completely safe for everyone. I'm glad

we have the freedom of choice, knowing that our doctors are weighing the

benefits to our particular disease situation with all the side effects that

the drug may bring. Having said that, I'm extremely thankful that I have the

drugs I have to take for AS/IBD /iritis. This is why we have the FDA

regulating all the drugs, why we have double blind studies...which include

placebo, why we have followup...long term studies done, and why we have a

huge 5 inch thick PDR (Physician's desk reference on all drugs) that shows

the complete composition of the drug/the indications for use/the dosage/the

side effects/the warnings/etc. Our pharmacist usually hands us a list of

warnings and side effects so we can have some control in being watchful of

any complication that might suddenly creep up. Most of our drugs have gone

through rigorous years of testing. Some people complain about having to wait

for testing and want the drug " now. " I take a more patient attitude (maybe

too much) and even wait awhile after the drug comes into the market place to

see and hear for myself. Many drugs have had to add other side effects to

their list when 1000s of people are exposed to the new drug and some have had

to be taken off market. At least, unlike alternative meds, we have this

information up front. I want to make it clear...I'm not against

alternatives...my husband and I have taken suppliments and herbs, but only

when they have been double blind tested and approved for a certain aliment.

My husband takes Saw Palmetto which has had double blind studies. There is an

interesting article of double blind studies of menopausal herbs (someone

mentioned this a few weeks ago) that should show how important studies are

for alternative meds. We have to remember that most of our known drugs come

from herbs...so herbs should be tested for their potency/effectiveness/and

safety just like conventional meds.

Best regards, Connie (granny)

[Guest guest]

when i went to my rheummy last week and we were talking about prednisone he

said that he found that prednisone didn't do much for reiter's syndrome and

the associated inflammation. i had not heard that before and was wondering if

anyone else had been told that or found that to be true.

randy RS AS FMS

[Guest guest]

In a message dated 1/15/03 12:23:35 PM, jturner@... writes:

<< Prednisone has transformed my life. It's not a good

long-term solution, but it is an excellent stopgap >>

Prednisone has enabled me to be almost pain-free for about three months,

when usually I am in agony (from AS) . It also seems to give me energy...has

anyone else noticed this?

I asked my rheumie why is is still used some, and her answer is, " There is no

better working anti-inflammatory " .

Now I have to stop taking it and go on Remicade.

I am so depresssed....

Pris

Show Biz tricks for pigs!

Awaken your pigs mind and give him challenges....

See our book at http://valentinesperformingpigs.com/trainingbook.html

[Guest guest]

>when i went to my rheummy last week and we were talking about prednisone

Randy--Like K's daughter, my son found that prednisone was the only thing

that allowed him to keep functioning during a severe flare. He has been

diagnosed with ReA and his knee and ankle were so painful he couldn't walk

until the prednisone. But, then, his doctor also prescribed Arava (and it

worked well--my son's now in remission). Obviously, there's some

disagreement among rheumatologists about what to do. --bc

[Guest guest]

That's baloney. Prednisone has transformed my life. It's not a good

long-term solution, but it is an excellent stopgap until I can get on

Enbrel. I would get a different rheummy. That doesn't even biologically

make any sense to say that. Prednisone is a non-specific immune

suppressant/anti-inflammatory. It's about the strongest anti-inflammatory

you can take. It works at least short-term on any disease that is

autoimmune in nature which reiter's syndrome definitely is.

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

when i went to my rheummy last week and we were talking about prednisone he

said that he found that prednisone didn't do much for reiter's syndrome and

the associated inflammation.

[Guest guest]

But Remicade might work much better and be safer in the long run. Although

Enbrel generally speaking has worked better for AS than Remicade. But, then

every patient's situation is different. Good luck with the Remicade.

Prednisone definitely increases my energy. When I first went on it I was a

little too hyper. The day my doctor prescribed it, I couldn't get up on the

examining table, could barely move my legs, couldn't lift my feet off the

ground. I took 10 mg. all at once and by the next day, I was rearranging

all the furniture in my apartment and moved a sofa all by myself across a

room and turned it around. It scared my kitty cat. I'm trying to taper

down to 3 mg. twice a day, but boy is it hard. I hope to get on Enbrel soon

if the insurance company will approve it.

I'll be interested to hear how the Remicade works for you. I hope it's a

miracle drug.

Janet

[Guest guest]

hi randy , my rheumy put me on prednisone first thing , it was a godsend

.. i went from almost wheelchair bound to walking freely and climbing

stairs . the long term side fx of pred scare me but going back to how i

was 6 months ago scares me even worse .............with this disease its

all a trade off and not much of it is good news .....................

nancy