RE: Warming up the Kineret?

[Guest guest]

Oh, Diane, That's totally unfair! I'd hate the stuff too if I were you!

in Maine

>

> I do warm up the Kineret before injecting...I take it out of the

fridge for about an hour...and I do ice the area before I inject..it

still hurts..the pain goes away after about a minute..sometimes it

bleeds...and then about 6-8 hours later, I itch like crazy..Tonight

after my shot, it didnt hurt much at all, nor did it bleed...maybe I

just hit the wrong spot sometimes..but the red welts make it hard to

find a good spot..grrrrrr!!

> I HATE this stuff!!!! 

>

>

>

> Diane..42

>

>

>

>

>

>

>

>

>

> Diane, my site reactions from kineret took a while to go away... I

>

> think maybe 6 or 8 weeks? They were nasty--big, hard, red, itchy

knots.

>

>

>

>

>

> > My God, where did they teach you to make the injection is my first

>

> question? Did they toss a paper at you and left you on your own?

>

>

>   I dont do the 45* angle, I do a 90*

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Why don't they make the stuff so you can take it orally? I suppose it's so

new that they are only just working on that now.

Chin up, Diane... that must suck. *hugs*

[Guest guest]

I have been on Kineret for about 4 years now. It is not that bad. I have a

injection tool I use. It works alot better than me trying to do this myself. I

also take a needle for methotrexate once a week. The Kineret only bleeds if i

hit a vein. When I go to take it, I just grab it from fridge I dont wait anymore

for it to warm up. I alcohol wipe the spot and shake my leg a little so my leg

is not tense when i inject it. I have done this for so long. It gets better

Re: Warming up the Kineret?

Oh, Diane, That's totally unfair! I'd hate the stuff too if I were you!

in Maine

>

> I do warm up the Kineret before injecting... I take it out of the

fridge for about an hour...and I do ice the area before I inject..it

still hurts..the pain goes away after about a minute..sometimes it

bleeds...and then about 6-8 hours later, I itch like crazy..Tonight

after my shot, it didnt hurt much at all, nor did it bleed...maybe I

just hit the wrong spot sometimes..but the red welts make it hard to

find a good spot..grrrrrr! !

> I HATE this stuff!!!! 

>

>

>

> Diane..42

>

>

>

>

>

>

>

>

>

> Diane, my site reactions from kineret took a while to go away... I

>

> think maybe 6 or 8 weeks? They were nasty--big, hard, red, itchy

knots.

>

>

>

>

>

> > My God, where did they teach you to make the injection is my first

>

> question? Did they toss a paper at you and left you on your own?

>

>

>   I dont do the 45* angle, I do a 90*

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

I think I am getting used to it better..I just dont know how my life would be

without taking 15-21 (21 on Sunday only-methotrexate) pills a day

checking my blood sugar 4 times a day

 taking at least 2 shots a day..

some days swollen, some days not..coughing till your ribs hurt

walking sloooowly

not going to work anymore..

hands, feet, knees hurting sooooo bad 

friends not calling..

itching like crazy some days..blah blah blah..lol

I just have to get used to it better.. I know it can be worse!

All this within 10 months..where does the time go!

Diane..42

I have been on Kineret for about 4 years now. It is not that bad. I have a

injection tool I use. It works alot better than me trying to do this myself. I

also take a needle for methotrexate once a week. The Kineret only bleeds if i

hit a vein. When I go to take it, I just grab it from fridge I dont wait anymore

for it to warm up. I alcohol wipe the spot and shake my leg a little so my leg

is not tense when i inject it. I have done this for so long. It gets better

Re: Warming up the Kineret?

Oh, Diane, That's totally unfair! I'd hate the stuff too if I were you!

in Maine

>

> I do warm up the Kineret before injecting... I take it out of the

fridge for about an hour...and I do ice the area before I inject..it

still hurts..the pain goes away after about a minute..sometimes it

bleeds...and then about 6-8 hours later, I itch like crazy..Tonight

after my shot, it didnt hurt much at all, nor did it bleed...maybe I

just hit the wrong spot sometimes..but the red welts make it hard to

find a good spot..grrrrrr! !

> I HATE this stuff!!!! 

>

>

>

> Diane..42

>

>

>

>

>

>

>

>

>

> Diane, my site reactions from kineret took a while to go away... I

>

> think maybe 6 or 8 weeks? They were nasty--big, hard, red, itchy

knots.

>

>

>

>

>

> > My God, where did they teach you to make the injection is my first

>

> question? Did they toss a paper at you and left you on your own?

>

>

>   I dont do the 45* angle, I do a 90*

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

>

> , I've only been taking Kineret for 3 weeks, but have had no adverse

> affects from injecting it cold and fast, aside from many ugly bruises where

> I've injected. I have been so pressed for time that I manage to inject

> myself with Forteo & Kineret (both) in under a minute, from the time I take

> them out of the 'fridge until I'm finished pushing the plunger all of the

> way down.

>

The only thing I'd like to know if I'm the only one who thinks that the

Kineret needles are incredibly " dull " as they seem to take quite a bit of

pressure before they pierce the skin. I inject Kineret into my thighs and

have to push down as hard as I can...otherwise the Kineret needle will push

my skin in at least 1/2 " before it pierces. I have found that I don't like

the needles very much (I've been on Enbrel & now Forteo and neither of those

took this much pressure to break the skin) and that is really my only bitch.

One other thing....how long are the majority of people on Kineret before

they start to feel any positive results???

Later, Kirk.

>

>

>

--

Everything in life sucks except things that should!

[Guest guest]

Kirk,

I find it hard to push the needle in also...I thought it was me being scared at

first, but it still

is hard to push in now..

take care..

Diane..42

>

The only thing I'd like to know if I'm the only one who thinks that the

Kineret needles are incredibly " dull " as they seem to take quite a bit of

pressure before they pierce the skin.

[Guest guest]

I find that splitting two fingers and pressing my skin inwards pretty

firmly greatly aids in using the Kineret, and I also found it makes the

injection rather painless compared to pressing it in.

Adios.

2008/8/15

> Kirk,

> I find it hard to push the needle in also...I thought it was me being

> scared at first, but it still

>

> is hard to push in now..

>

> take care..

>

> Diane..42

>

> >

>

> The only thing I'd like to know if I'm the only one who thinks that the

>

> Kineret needles are incredibly " dull " as they seem to take quite a bit of

>

> pressure before they pierce the skin.

>

>

[Guest guest]

Diane, you sound like you could use a good hug or shoulder to cry on.

I'm so sorry.

I think everyone adjusts differently and at different paces. I spent

the first year being really cheerful and optimistic ( " things could be

worse! " " I'm sure it'll just go away! " ) with bouts of anger in

between. The second year I spent angry and depressed and isolated.

Year three was better--I took some time off from work and am

realizing, just now, in year four, that I need to start processing my

disability claim so I can drop back to part time. I started doing

pottery again, I'm resting a lot, I just learned how to press flowers

in the microwave (small but significant pleasure!). After a while,

the meds become somewhat routine (even a day of nausea and intestinal

distress after taking MTX is " routine " believe it or not... I just

don't change out of my nightgown on Fridays), and you start to

remember that you have a " rest of your life " and find new ways to

enjoy it.

Of course, that's the me speaking who has been feeling pretty good for

the past three days after a huge-almost went to the hospital-evening

flare on Monday. The me who isn't feel so good will likely say to you

with a Blair spinning head, " Aaarrghhhhh! It sucks and it's

never ending!!!! "

You'll start living again, Diane. You will. Get as much help as you

can--see a counselor--learn to breathe deeply--don't lose hope.

>

> >

>

> > I do warm up the Kineret before injecting... I take it out of the

>

> fridge for about an hour...and I do ice the area before I inject..it

>

> still hurts..the pain goes away after about a minute..sometimes it

>

> bleeds...and then about 6-8 hours later, I itch like crazy..Tonight

>

> after my shot, it didnt hurt much at all, nor did it bleed...maybe I

>

> just hit the wrong spot sometimes..but the red welts make it hard to

>

> find a good spot..grrrrrr! !

>

> > I HATE this stuff!!!! 

>

> >

>

> >

>

> >

>

> > Diane..42

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> > Diane, my site reactions from kineret took a while to go away... I

>

> >

>

> > think maybe 6 or 8 weeks? They were nasty--big, hard, red, itchy

>

> knots.

>

> >

>

> >

>

> >

>

> >

>

> >

>

> > > My God, where did they teach you to make the injection is my first

>

> >

>

> > question? Did they toss a paper at you and left you on your own?

>

> >

>

> >

>

> >   I dont do the 45* angle, I do a 90*

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

[Guest guest]

What is with the cough? I have it too... I get it when I lay down, or have

been talking to someone for a while. Is that normal?

*hugs* about the friends, . I have some like that too. I think they are

just overwhelmed that something like this can happen so fast to anyone and

it scares them. But on the other hand, I have had friends come out of the

woodwork and be absolutely incredible to me.

>

>

> I think I am getting used to it better..I just dont know how my life would

> be without taking 15-21 (21 on Sunday only-methotrexate) pills a day

>

> checking my blood sugar 4 times a day

>

> taking at least 2 shots a day..

>

> some days swollen, some days not..coughing till your ribs hurt

>

> walking sloooowly

>

> not going to work anymore..

>

> hands, feet, knees hurting sooooo bad

>

> friends not calling..

>

> itching like crazy some days..blah blah blah..lol

>

> I just have to get used to it better.. I know it can be worse!

>

> All this within 10 months..where does the time go!

>

> Diane..42

>

> I have been on Kineret for about 4 years now. It is not that bad. I have a

> injection tool I use. It works alot better than me trying to do this myself.

> I also take a needle for methotrexate once a week. The Kineret only bleeds

> if i hit a vein. When I go to take it, I just grab it from fridge I dont

> wait anymore for it to warm up. I alcohol wipe the spot and shake my leg a

> little so my leg is not tense when i inject it. I have done this for so

> long. It gets better

>

> Re: Warming up the Kineret?

>

> Oh, Diane, That's totally unfair! I'd hate the stuff too if I were you!

>

> in Maine

>

>

>

> >

>

> > I do warm up the Kineret before injecting... I take it out of the

>

> fridge for about an hour...and I do ice the area before I inject..it

>

> still hurts..the pain goes away after about a minute..sometimes it

>

> bleeds...and then about 6-8 hours later, I itch like crazy..Tonight

>

> after my shot, it didnt hurt much at all, nor did it bleed...maybe I

>

> just hit the wrong spot sometimes..but the red welts make it hard to

>

> find a good spot..grrrrrr! !

>

> > I HATE this stuff!!!!Â

>

> >

>

> >

>

> >

>

> > Diane..42

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> > Diane, my site reactions from kineret took a while to go away... I

>

> >

>

> > think maybe 6 or 8 weeks? They were nasty--big, hard, red, itchy

>

> knots.

>

> >

>

> >

>

> >

>

> >

>

> >

>

> > > My God, where did they teach you to make the injection is my first

>

> >

>

> > question? Did they toss a paper at you and left you on your own?

>

> >

>

> >

>

> > Â Â I dont do the 45* angle, I do a 90*

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

[Guest guest]

My daughter starts Kineret today and I think I will probably have to give her

the shot because her hands are rather swollen. Hopefully soon she will be able

to do it. I noticed from previous emails that it is helpful to let it warm up

but I had only just read that the needle may be difficult to push in.  Any

suggestions on that point?  If she is well enough she goes back to school next

weekend. Her body has very little time to recover and she also has to learn to

give this each day. Dr. Cush gave her a steroid shot on wed at noon which made

her feel great for a day and a half. By last night she was back the same as she

was.

 

Thanks for sharing all the tips.

Lea

Subject: Re: Warming up the Kineret?

To: Stillsdisease

Date: Thursday, August 14, 2008, 11:06 PM

>

> , I've only been taking Kineret for 3 weeks, but have had no adverse

> affects from injecting it cold and fast, aside from many ugly bruises where

> I've injected. I have been so pressed for time that I manage to inject

> myself with Forteo & Kineret (both) in under a minute, from the time I take

> them out of the 'fridge until I'm finished pushing the plunger all of the

> way down.

>

The only thing I'd like to know if I'm the only one who thinks that the

Kineret needles are incredibly " dull " as they seem to take quite a bit of

pressure before they pierce the skin. I inject Kineret into my thighs and

have to push down as hard as I can...otherwise the Kineret needle will push

my skin in at least 1/2 " before it pierces. I have found that I don't like

the needles very much (I've been on Enbrel & now Forteo and neither of those

took this much pressure to break the skin) and that is really my only bitch.

One other thing....how long are the majority of people on Kineret before

they start to feel any positive results???

Later, Kirk.

>

>

>

--

Everything in life sucks except things that should!

[Guest guest]

Hi Lea,

The nurse taught me not to push the needle in, but to make a quick jab

into the skin. That way it goes in all at once. Of course, sometimes

I hesitate (I'm still fairly new at this), and I don't get it all the

way in; then I usually just try again. The nurse told me specifically

not to push it through the skin, I suppose because of how painful this

could be. Most of the time I get the needle all the way in in one

motion. I hope this helps - good luck!

> My daughter starts Kineret today and I think I will probably have to

> give her the shot because her hands are rather swollen. Hopefully

> soon she will be able to do it. I noticed from previous emails that

> it is helpful to let it warm up but I had only just read that the

> needle may be difficult to push in. Any suggestions on that point?

> If she is well enough she goes back to school next weekend. Her body

> has very little time to recover and she also has to learn to give

> this each day. Dr. Cush gave her a steroid shot on wed at noon which

> made her feel great for a day and a half. By last night she was back

> the same as she was.

>

> Thanks for sharing all the tips.

> Lea

>

>

>

>

> Subject: Re: Warming up the Kineret?

> To: Stillsdisease

> Date: Thursday, August 14, 2008, 11:06 PM

>

> >

> > , I've only been taking Kineret for 3 weeks, but have had no

> adverse

> > affects from injecting it cold and fast, aside from many ugly

> bruises where

> > I've injected. I have been so pressed for time that I manage to

> inject

> > myself with Forteo & Kineret (both) in under a minute, from the

> time I take

> > them out of the 'fridge until I'm finished pushing the plunger all

> of the

> > way down.

> >

> The only thing I'd like to know if I'm the only one who thinks that

> the

> Kineret needles are incredibly " dull " as they seem to take quite a

> bit of

> pressure before they pierce the skin. I inject Kineret into my

> thighs and

> have to push down as hard as I can...otherwise the Kineret needle

> will push

> my skin in at least 1/2 " before it pierces. I have found that I

> don't like

> the needles very much (I've been on Enbrel & now Forteo and neither

> of those

> took this much pressure to break the skin) and that is really my

> only bitch.

> One other thing....how long are the majority of people on Kineret

> before

> they start to feel any positive results???

>

> Later, Kirk.

>

> >

> >

> >

>

> --

> Everything in life sucks except things that should!

>

>

[Guest guest]

Hi,

I am on Kineret also and what helped me most was: to take the shot out of the

fridge and place it on the bathroom counter to warm while I take a shower.

After my shower, when my skin is soft & clean and the Kineret is warm I pinch

and inch and inject. My system really works for me and the nurse

said I didn't even need to use alcohol because my skin is clean. I hope your

daughter feels better soon! It took me about a month after Kineret to feel

almost symptom free. I still get the occasional rash or joint ache.

Sedillo

Educational Diagnostician

Hays CISD Special Education Department

sedillol@...

phone ext. 6951

[Guest guest]

When I was taking Kineret, I jabbed it too. Just pinch the skin (I found it

hardly hurt at all in the abdomen)...get a running go at it, hold your breath

and jab. After the first time she'll say " What was I worried about " . It really

isn't bad at all. Good luck!

in TX

[Guest guest]

Did any of you feel better at all after the first injection of Kineret?

Lea

Subject: Re: Warming up the Kineret?

To: Stillsdisease

Cc: Stillsdisease

Date: Friday, August 15, 2008, 1:16 PM

Hi,

I am on Kineret also and what helped me most was: to take the shot out of the

fridge and place it on the bathroom counter to warm while I take a shower. After

my shower, when my skin is soft & clean and the Kineret is warm I pinch and inch

and inject. My system really works for me and the nurse

said I didn't even need to use alcohol because my skin is clean. I hope your

daughter feels better soon! It took me about a month after Kineret to feel

almost symptom free. I still get the occasional rash or joint ache.

Sedillo

Educational Diagnostician

Hays CISD Special Education Department

sedillolhayscisd (DOT) net

phone ext. 6951

[Guest guest]

I did - I think even within a few minutes I started to feel better. I

was doing pretty well before I started Kineret. I was on 60mg of

prednisone, and this suppressed all the symptoms for the most part,

except that I felt tired and not alert most of the time. What I

noticed when I started Kineret was that I suddenly had more energy,

and it was as if a fog was lifting - I felt more alert very soon.

> Did any of you feel better at all after the first injection of

> Kineret?

> Lea

>

>

>

>

> Subject: Re: Warming up the Kineret?

> To: Stillsdisease

> Cc: Stillsdisease

> Date: Friday, August 15, 2008, 1:16 PM

>

> Hi,

> I am on Kineret also and what helped me most was: to take the shot

> out of the fridge and place it on the bathroom counter to warm while

> I take a shower. After my shower, when my skin is soft & clean and

> the Kineret is warm I pinch and inch and inject. My system really

> works for me and the nurse

> said I didn't even need to use alcohol because my skin is clean. I

> hope your daughter feels better soon! It took me about a month after

> Kineret to feel almost symptom free. I still get the occasional rash

> or joint ache.

>

> Sedillo

> Educational Diagnostician

> Hays CISD Special Education Department

> sedillolhayscisd (DOT) net

> phone ext. 6951

>

>

[Guest guest]

I did, Lea. By my third day, I felt " cured. " That lasted about 8

weeks, then it gradually became less effective for me. But other

people on this board have been on it more successfully for years.

in Maine

>

> Did any of you feel better at all after the first injection of Kineret?

> Lea

>

[Guest guest]

,

Were your symptoms more stills related or RA related. Dr. Cush said it usually

works fastest on Stills symptoms.  Did you go on to a different medication? Have

you tried enbrel?

Lea

Subject: Re: Warming up the Kineret?

To: Stillsdisease

Date: Friday, August 15, 2008, 3:46 PM

I did, Lea. By my third day, I felt " cured. " That lasted about 8

weeks, then it gradually became less effective for me. But other

people on this board have been on it more successfully for years.

in Maine

>

> Did any of you feel better at all after the first injection of Kineret?

> Lea

>

[Guest guest]

Lea, I'm not sure what you mean--I've always considered the joint

pain/inflammation all part of the Still's, not RA, because I tested

negative for RA. If you mean the systemic symptoms, like fevers,

rashes, sore throats, etc., then YES, I had NONE of those, but I also

went from barely being able to walk because of joint pain to Boogie

Boarding and lugging firewood and running up and down stairs almost

overnight. It truly was a short-term miracle.

I tried Enbrel--both the weekly injection and the self-mixing, twice

weekly. It never worked as well for me as Kineret. Oh, I should add

that I've always been on prednisone and MTX as well. The biologic

drug was just added to the cocktail. Too bad I didn't get an olive

and a martini glass with that.

>

> ,

> Were your symptoms more stills related or RA related. Dr. Cush said

it usually works fastest on Stills symptoms.  Did you go on to a

different medication? Have you tried enbrel?

> Lea

>

[Guest guest]

,

Thanks-- how much prednisone do you take?  I think wants to get off the

steroids as soon as possible because she is concerned about the side effects.

Have you and your doctor discussed that?  She has never had a sore throat until

recently. The rashes lasted for the first  2 months and then declined to

completely gone now a year later. Now it is fatigue and joint pain and swelling

- much like you mentioned where you couldn't walk well. Today is her 2nd day on

Kineret and she has also just begun MTX . She has been on plaquenil for a year

and celebrex. You are tight about the cocktail.

 

Lea

Subject: Re: Warming up the Kineret?

To: Stillsdisease

Date: Friday, August 15, 2008, 4:03 PM

Lea, I'm not sure what you mean--I've always considered the joint

pain/inflammation all part of the Still's, not RA, because I tested

negative for RA. If you mean the systemic symptoms, like fevers,

rashes, sore throats, etc., then YES, I had NONE of those, but I also

went from barely being able to walk because of joint pain to Boogie

Boarding and lugging firewood and running up and down stairs almost

overnight. It truly was a short-term miracle.

I tried Enbrel--both the weekly injection and the self-mixing, twice

weekly. It never worked as well for me as Kineret. Oh, I should add

that I've always been on prednisone and MTX as well. The biologic

drug was just added to the cocktail. Too bad I didn't get an olive

and a martini glass with that.

>

> ,

> Were your symptoms more stills related or RA related. Dr. Cush said

it usually works fastest on Stills symptoms.  Did you go on to a

different medication? Have you tried enbrel?

> Lea

>

[Guest guest]

Lea, I hope has good results from the Kineret. How did the

injection go for her?

I've been on prednisone for over three years. When I first got

Still's, I was on 60-80 mg/day, then after I started MTX, I was able

to taper down to 30-40. After adding Enbrel, I tapered to 20 mgs. but

began having evening flares 4-5 days/week again, so I switched to

Kineret, got great results, and tapered to 8 mgs. prednisone, but 3

months later, I had to double my MTX, then 3 months after that I had

to go back up to 20 mgs. prednisone to keep the flares to a minimum.

Like in Texas, I think I have a really active version of the

disease--it seems to " morph " after I've been on a drug for a while, so

I'm always adjusting the cocktail. I don't think this happens to

everyone--just the *lucky* ones, maybe half of us here?

I agree, getting off the steroids quickly is what you want to do. I've

been tapering all summer and took time off from work to see if that

would ease the adjustment. I made it down to 4 mgs. but haven't been

doing well. Unfortunately, for me, they've always been the one thing

I can count on to keep the flares to a minimum. I should

clarify--because I'm always in an active state of the disease--never

in a " real " remission--I think of " flares " as the ones that happen

every evening, when my temp shoots up to 100-103, I get the chills and

shakes and a rash, and the joint pain starts migrating. People who

experience remissions (natural or drug induced), will say they're " in

a flare " when the disease gets active again.

Confusing, I know, but this disease is like a big rubiks cube.

in Maine

>

> ,

> Thanks-- how much prednisone do you take?  I think wants to

get off the steroids as soon as possible because she is concerned

about the side effects. Have you and your doctor discussed that?  She

has never had a sore throat until recently. The rashes lasted for the

first  2 months and then declined to completely gone now a year later.

Now it is fatigue and joint pain and swelling - much like you

mentioned where you couldn't walk well. Today is her 2nd day on

Kineret and she has also just begun MTX . She has been on plaquenil

for a year and celebrex. You are tight about the cocktail.

>  

> Lea

[Guest guest]

Hi

When you started on kineret did you cut down your prednisone straight away?

I have just started Humira and am not feeling too good - just a bit fuzzy

and not quite with it and as I have not been told to cut down on pred. I

thought I was meant to wait until I improved with the Humira and then cut

down. I am just asking out of interest, of course I will ask my doctor what

I should do

Cheers

Joan U.K.

[Guest guest]

Hi Joan,

The doctors had me wait two weeks after starting Kineret. At two

weeks we reduced from 60 to 50mg of prednisone, and two weeks after

that we went to 40mg. Now since things are continuing to go well,

they are letting me reduce by 10mg per week until I get down to 10mg.

So far all is going well - no fevers, etc. Good luck to you and to

everyone!

> Hi

>

> When you started on kineret did you cut down your prednisone

> straight away?

> I have just started Humira and am not feeling too good - just a bit

> fuzzy

> and not quite with it and as I have not been told to cut down on

> pred. I

> thought I was meant to wait until I improved with the Humira and

> then cut

> down. I am just asking out of interest, of course I will ask my

> doctor what

> I should do

>

> Cheers

>

> Joan U.K.

>

>

[Guest guest]

Lea,

It took about 6 weeks utnil I realized I was feeling better from teh

Kineret. It was a gradual build, which I personally think is

preferable. When I was on Enbrel I felt better right away and after 2

months it stopped working. The gradual build to feeling better has

eventually worked out far better in the end.

Houston, TX

[Guest guest]

,

 

I think is beginning to feel better. It is difficult to know what is

helping because Dr. Cush did start her on Prednisone. 10mg twice a day. Besides

Kineret she is on MTX and is so concerned that she will loose her hair. I sort

of wish he had only put her on one thing but she was so bad last week I know he

just wanted to hot it hard. She is not taking celebrex any more now that she is

taking Pred but is still on Plaquenil.

 

Maybe you are right and a slower improvement is better. she leaves to go back to

Austin and move into a new apt. and start her senior year at UT. I will be on my

knees praying her through this year.

 

Take care

Lea

Subject: Re: Warming up the Kineret?

To: Stillsdisease

Date: Monday, August 18, 2008, 7:51 AM

Lea,

It took about 6 weeks utnil I realized I was feeling better from teh

Kineret. It was a gradual build, which I personally think is

preferable. When I was on Enbrel I felt better right away and after 2

months it stopped working. The gradual build to feeling better has

eventually worked out far better in the end.

Houston, TX

[Guest guest]

Lea,

I did experience thinning of my hair on MTX. Just on the top. I have

had some on Arava as well, but it has greatly slowed down. i too was

mostly worried about that as I have a thick mane of hair. but as time

wore on and I matured about the reality of this disease, I realized

that wearing a wig was the least of my concerns if the rest of me

functioned better. A wig became a viable alternative to the brain fog

and pain. But it did take me a good long while to get to that

thinking - and heck now I work in a place where women wear wigs and go

bald all the time out of the necessity of chemo/radiation. Eventually

will come to these realizations on her own, but let's hope in

the meantime all goes well for her with the medications.

Hook 'em,

Houston, TX