Re: I don't understand....

[Guest guest]

Kelli, you hit the nail on the head!!! While Enbrel and other

biologics are intended to stop joint destruction... and in most cases

they do. But everyone is different and sometimes the biologics

don't work as well as with that person as the doc had hoped. And

sometimes after being on these meds for a long time, more than 10

years they can lose their efficiency, although it is rare. There

are alot of factors with the biologics. Even something as simple

as the pharmacy not storing it in the fridge.... well that makes the

med ineffective and usually the patient never knows.

But if you take it all the way around...... the biologics in my

opionion work better, have much, much, much, less side effects

( minus infections which is why you have to stop taking it if you

develop the flu, have surgery, even a bad cold.) And skipping those

doses can set you back a bit. I've had to stop my enbrel lots of

times for surgeries, But as soon as I started it back I felt much

better. And even when I did stop I never had a major flare with

stills. Just had some stiffness and fatigue and some increased pain.

I just had my first major flare in 12 years since I staeted taking

enbrel. My RD did say that long term use of enbrel that sometimes

the drug just fails to work and they move on to another. But

honestly I think my flare came from MAJOR STRESS ( worse than my

divorce and the last 4 yrs that followed) and I had another total

hip so I stopped it for 2 months... Then when I started it back I got

MRSA in the joint replacement, so that was another 4 months without

enbrel. So I think it just all built up. And hopefully the enbrel

still works for me....it's just that not taking it for so long I had

a flare. Hope this helps

Jen

[Guest guest]

Subject: I don't understand....

 

Our family is new to Still's. I thought that medication was supposed to keep

joints from deteriorating. Are the newer drugs like Kineret and Enbrel, etc.,

keeping that from happening, or do you just not know if you if it is going to

happen despite medication.

Thanks all!

Kelli

Kelli

 How any of the meds work for one is not a given at all for one it may stop

things and in another it may only slow things down and for some it may not help

at all and so the reason to try other meds tell a mix is found that works the

best for you as a person what ever that may be . you must remember that there is

no cure at this time for stills and the best we all fight for is control of it

and hope for a remission be it from meds or just stills taking a break from us

for a time and how long that time is even that no one can say as again for each

it is very different. so will a med stop it cold for you or any one it might

happen and then maybe not this is why it is good for one to keep a log of how

they feel daily and to take it to there doctors appointments with them to help

show how things are doing besides just by memory. I know it is not what you

wanted to here as just like when I started this journey with stills I did not

want to here it but it is what it is . I also would suggest one other thing both

the one with stills and all in the house hold get some counseling on living with

chronic illness as it not only changes the one withs life but every one around

them that loves and cares for them also. it helps to understand things a bit not

medically but on the humanistic side of life as some times that can be as hard

to deal with the changes as the pain and physical problems stills can bring

hugs

 

The Redneck

Marty G.

Be careful about reading health books. You may die of a misprint.

Mark Twain

I don't give a damn for a man that can only spell a word one way.

Mark Twain

 

To learn about Stills Disease http://www.stillsdisease.org/stills_info

[Guest guest]

So Jen, is the hip replacement because of Still's? If you were on Enbrel and it

worked why did you have your hip replaced? Was it damage that happened before

you were on the biologic? Will joint deterioration happen while on prednisone?

Jasmine started at 60 mg. but had to go up to 80 mg. because her white count

went up to 54,000. She is down to 30 mg. and tapering a little each week. We see

her RD in a month and will set up her next protocol then.

Thanks all!

Kelli

[Guest guest]

> Hey , yes the hip replacement was done about 8 years

> before Enbrel was approved. I had alot of damage done to my joints

> during the onset and the 2 years that followed. They have much

> better meds now!!!! I did take prednisone. And actually

> prednisone can cause some serious side effects. One being

> Avascular Necrosis, in which the blood supply is reduced to the

> joints resulting in bone death. Then you develop arthritis where

> you previously may not have been affected. It doesnt happen to

> everyone. but it is a concern especialy taken long term. The

> vast majority of hip replacements that are done because of AVN are

> due to prednisone use. Prednisone is used for many, many illnesses

> including asthma, and it's given in high doses with

> chemotherapy. I've know several cancer patients beat their cancer

> only to find that the prednisone they took caused bone death and

> they had to have a hip replacement. Now with that being

> said..... Don't let it scare you away from prednisone. It is a

> life saver. A life saver with risks, but a life saver

> nonetheless. Most of the time we dont' have any option but to

> take the prednisone when in a still's flare or onset. Everyone's

> body is different and I have know people that have taken prednisone

> for 30 years and they never developed the bone death. So.... it's

> kinda of like a coin toss.... But if the doctor says he needs it,

> Im sure he does. Still's flares are aggressive... and the

> prednisone is helping that. Ive had still's for 20 years ,

> since I was 18 and they really didnt have any good meds to stop

> joint destruction other than pred, methotrexate, gold,

> plaquenil... I do know that in my case when they did the MRI

> when I was 21 it showed no evidence of avascular necrosis and the

> damage done was consistent with agressive inflammatory arthritis.

> Now when I had my other hip done a few years ago, they did see

> some AVN.... but I had been taking pred for 10 years.

Hope this helps

> .

>

>

[Guest guest]

WOW! Thank you Jen for sharing with us! We'll find out in a month what's next

for Jasmine. Please keep her in your thoughts and prayers!