remicade

[Guest guest]

Actually the foot ankle symptoms sound very familiar. I too get

flare ups in this area as well as other areas of the body at

different intervals. My exrays never show anything either.

Sometimes my ankle gets so bad that when I get up in the morning I

can't walk without holding onto the table and hopping.(I use a golf

putter for a cane when I'm around the house)-then suddenly it goes

away like I never had it.Same with my neck, eye,ect.. too.

Something Iv'e realized for myself, is that if I take vitamins or

immune boosting things, a few weeks later I get a flare up of

somekind.

Bonnie

>

> Hi all.? I've not been present in the group for?a while.? I have

Reactive Arthritis, AS and now crones.? I am unable to take any anti

inflammatories as they cause plumbing problems.? I've been through

basically all the DMARDs, methotrexate, etc.? They started me last

Thursday on Remicade.? Just curious how long it has taken for people

to tell it is working?? Also I am having severe foot pain (ball of

the foot, ankle and spreading up the ankle now).? They took an xray

and nothing is broken, so basically they stopped looking and said it

is the arthritis.? What are people using in their shoes or to steady

their ankle?? Rheumy said hard shoe inserts would be painful.? I've

tried the?Dr.Scholls and all the over the counter inserts.? He

mentioned a New Balance store which I haven't had a chance to visit.?

Just curious if anyone knows anything about them or has any advice.??

I just feel that there is something else wrong in the foot besides

the arthritis.? Thanks for any help you can provide.? Kathy from WI

>

>

>

>

[Guest guest]

Hi Liz

I do believe I mentioned the fact that they have me on Prednisone 50 mg daily

for 6 months to try to rectify something growing on my lungs. It has helped the

pain levels somewhat but has sent my blood sugars haywire at mid day. On top of

that, with all the cold weather (-50C) two nights in a row, I now have a rotten

head cold. It has been bitterly cold for more than a week and it wreaked havoc

on both vehicles. That meant I had to get all bundled up to go out and get

things running again. They are also hoping that the Prednisone does something

to help the major sweats I am having again. That I think is the main reason I

have the cold now. I start sweating and then have to move around and sweat

more. That means I have to come in, get out of my parka which is damp on the

inside now, my arctic eskimo made hoody I wear in real cold weather comes off

and underneath is my t-shirt which is soaking wet. I actually look like I just

stepped out of a shower. Then once dry clothes are put on it is outside again

to shut everything off or run to the store.

Right now I am praying that this head cold goes no further so I can try to get

better. Having pneumonia last April and May has not helped at all.

One problem we had to face was the isolation from groups of people during church

services (none for me), volunteer Christmas parties, and even a family Christmas

Dinner at our daughter's place. She is cooking for both sides of the family and

we were invited but had to say no. Needless to say this is also playing on my

mind. I just pray that this whole treatment is worthwhile and gets rid of any

fibrosis or other junk in my lungs.

Glad to hear that the Remi helped you and pray that you can get it back.

Blessings

Fr. Dave

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[Guest guest]

Hi,

I am on Enbrel and it took about a month to really get some signs that

it was working. I am also on Methotrexate, that helps me.

I have ankle and knee issues. A sports teacher turned me on to Ryka

sneakers. They have a built in wide stabilized heel. They fit like a

glove and never gave me any blisters. I like them better than any shoe

or sneaker I have tried for stability. My 2nd choice is Reeboc s,

they are a little less in price but not as stable.

I do not like how ortho's feel and have not found any over the counter

or the two I had made professionally. I do however think it is a good

idea to see a Physical Therapist or go to Rehab if you are in severe

pain or weak and prone to fall or hurt yourself. I have had sucess with

physical therapy.

Good luck,

MK

[Guest guest]

I'm glad to hear I'm not the only one who has had this experience with

Remicade (not that I would wish it on anyone) but I find it

interesting that my rheumy always acts as though he's perplexed that

the drugs aren't working.

I did try Enbrel but had neurological problems and had to stop it after

2 months. Also tried Humira but it did nothing at all. Not sure where

he'll go from here now that all 3 biologics have been tried. Right now

I'm just hoping the neck/back and headaches go away soon!

[Guest guest]

,

When I was first diagnosed I was on remicaide and it was GREAT!! I would feel so

good after an infusion that I went for a run. I regretted the next day, and I

had to learn to pase myself. I had no side effects from it and it helped me soo

much.

> >

> > Has anyone had experience with Remicade? I'm starting later on this month

and I'm scared to death about all the side effects and the TB

> > warnings.

> >

>

[Guest guest]

Doreen,

No, i am not on remicade anymore. Ever since the sepsis, my rheumy won't put me

on any of the new DMARDs. I am on sulfasalizine and plaquinel. I felt the best

on remicade. I noticed a differance immedately after the 1st infusion. I know

it can take a few weeks before you can feel a difference...talk to your rheumy.

Crossing my fingers that you approved soon for ssdi. take care.

>

> ,

>

> When I was first diagnosed I was on remicaide and it was GREAT!! I would feel

so good after an infusion that I went for a run. I regretted the next day, and I

had to learn to pase myself. I had no side effects from it and it helped me soo

much.

>

>

>

[Guest guest]

dd,

When the med starts working, you can really tell when your in need for

the next dose. It's the same way with humira and mtx for me. I hope

you get some relief immediately after your infusion. Do you take other

meds, to help you? I have pain meds, when I need to take them.

Hey, at least he knows it effects your joints. Some people I talk to,

think its still an old person's disease,lol Which makes me pissed.

Keep us posted, and hope you feel better Tuesday.

Tawny

>

> Tuesday is my infusion. It's been 8 weeks. I've been having symptoms

for

> the last couple of weeks. Joints are more inflamed, GI issues from

Crohn's

> and hours of reflux last night.

>

> Am really anxious to get back to my new normal.

>

> I went to a party last night and told someone that I now have RA. He

asked

> which joints I have it in -- which let me know he has no idea.

>

> dd

> **************A Good Credit Score is 700 or Above. See yours in just 2

easy

> steps!

>

(http://pr.atwola.com/promoclk/100126575x1222846709x1201493018/aol?redir\

=http://www.freecreditreport.com/pm/default.aspx?sc=668072 & hmpgID=115 & bc\

d

> =JulystepsfooterNO115)

>

>

>

[Guest guest]

In a message dated 1/10/2010 9:54:19 P.M. Central Standard Time,

deulrich@... writes:

I am also interested in how Remicade works. I have failed mtx, enbrel,

humira and now Orencia and Immuran combination. Anyone take Immuran and have

side effects? RA remains very active. Just curious about Remicade - how

fast it reduced symptoms for folks and any side effects. >

I was pretty much in a medicine-induced remission before we started on

Remicade. It was actually my GI that suggested it for Crohn's symptoms. The

only side-effect I have had is my nails are trashed. They peel and break off

and look terrible. Then we switched from Mtx to Imuran because I was still

getting a little nauseated from the Mtx. I lost a few hairs then, but my

beautician said my hair is so much better than when I was on Arava.

I believe I am on the lowest dose of Remicade and I am going to ask to have

it raised this week when I have my infusion. I also see my rheumatologist

and that's the only issue. I've had some knee, hip and hand pain this time.

Not sure I'm answering your questions. My symptoms were mostly gone when I

started Remicade and for the most part remain gone.

dd

[Guest guest]

Hi ,

I did Remicade for a year, it did help but I eventually had a problem with

it and went back to just mtx.

I will tell you that I went the first time with my husband in tow and I was

scared to death, actually in tears and it was all for nothing. They will

take your temp, my doc has private rooms, real nice recliner you sit in, the

nusre will get the IV in and then it's just a matter of sitting there for 2

hours. They'll put a blanket on you because some say they get a little

cold. There was a bell next to my chair to ring if anything felt funny, one

day I accidently hit the bell and they were there in an instant. You can

read, sleep, watch TV. Afterwards I felt the same and went about my day.

Good luck, I know two people who have been on it for years and do very well

on it. It's all a matter of finding out what your body likes best.

in PA

On Sun, Sep 12, 2010 at 1:03 PM, Scherrer <hscherrer@...>wrote:

>

>

> Good morning

>

> I have been taking Arava and Enbrel injections for a few years now, but

> things aren't going well for me so my rheumatologist is switching me to

> Remicade infusions.

>

> I know some of you are on it, so I'm hoping to get some information about

> it.

>

> How long do you go for?

> How often do you go?

> Are you sitting in a comfortable chair?

> How do you feel after the infusion?

>

> Also, if anyone has any advice about a newbie starting Remicade that would

> be great.

>

> Thanks to all,

>

> , 32 from WA state

>

> Sent from my iPhone

>

> On Sep 11, 2010, at 8:06, dgd301@... <dgd301%40aol.com> wrote:

>

> > I had my Remicade infusion on Tuesday -- also got a flu shot and a

> > cortisone shot in my right thumb. He ordered complete bloodwork and we

> did a xray

> > of my left hip. A cortisone shot in that hip is in my near future.

> >

> > The bloodwork came back yesterday. Liver good, kidneys good, RDW is

> > slightly high. 15.2 -- should be between 11 and 15. I don't know if this

> is

> > related to RA or one of my other problems.

> >

> > CRP is 1.6. Normal is between 0 and .9.

> >

> > He wrote " slight inflammation, stable. Would like it to be zero, but

> you're

> > on fairly maximal therapy. "

> >

> > I do feel pretty well since I started taking an anti-thyroid medication,

> > although I'm fatigued today. I've decided to walk our beagle a half mile

> each

> > morning, no matter what. We used to walk much longer than that, but I

> > pretty much quit walking when I first got RA. So I'm working my way up. I

> can

> > easily talk myself into a half mile. We haven't been rained out yet --

> we've

> > gone almost a month without missing a day. I can mall-walk when the

> > weather is bad, but " no dogs allowed. "

> >

> > dd

> >

> >

[Guest guest]

Hi

I get my Remicade every 8 weeks. It takes between 1 1/2 and 2 hours and I sit in

a comfortable chair.

I have never had any problems or side effects from it and it has worked really

well for me. I feel great after the infusion.

I hope you have a similar good result.

Maggie

>

> Good morning

>

> I have been taking Arava and Enbrel injections for a few years now, but things

aren't going well for me so my rheumatologist is switching me to Remicade

infusions.

>

> I know some of you are on it, so I'm hoping to get some information about it.

>

> How long do you go for?

> How often do you go?

> Are you sitting in a comfortable chair?

> How do you feel after the infusion?

>

> Also, if anyone has any advice about a newbie starting Remicade that would be

great.

>

> Thanks to all,

>

> , 32 from WA state

>

> Sent from my iPhone

>

>

[Guest guest]

What is the difference between Remicade and Enbrel?

Jon

________________________________

From: maggiemac52 <maggiemac52@...>

Sent: Sun, September 12, 2010 4:16:39 PM

Subject: [ ] Re: Remicade

Hi

I get my Remicade every 8 weeks. It takes between 1 1/2 and 2 hours and I sit in

a comfortable chair.

I have never had any problems or side effects from it and it has worked really

well for me. I feel great after the infusion.

I hope you have a similar good result.

Maggie

[Guest guest]

They are both tumor necrosis factor antagonists. Remicade is given by

infusion, while Enbrel is given by injection. You have to go to a

doctor's office or other place to get an infusion, while you can

inject the Enbrel yourself at home. Enbrel is much more convenient for

me.

Sue

On Sep 12, 2010, at 4:59 PM, A Z wrote:

> What is the difference between Remicade and Enbrel?

>

> Jon

>

[Guest guest]

In a message dated 9/12/2010 3:11:43 P.M. Central Daylight Time,

hscherrer@... writes:

How long do you go for?

How often do you go?

Are you sitting in a comfortable chair?

How do you feel after the infusion? /

When I was on the lower dose, it took 2 hours -- now it's 2.5.. I go every

eight weeks. I am in a nice recliner and they have heated blankets. The

recliner has a desk thing that goes over and I bring a project I can do on my

computer. The clinic has WiFi, so I check my email, etc.

I am somewhat tired for a day or two after the infusion. This time I also

got a flu shot and thought I was more tired than usual.

dd

[Guest guest]

Thanks.

I have no problems with the injection regimen and demands of Enbrel.

I have also never had an ISR or suffered from any infections requiring medical

intervention due to its use. I currently work in a fetid, disgusting sorry

excuse for an office with a mouse-eating cat and its open litter box in my

office. Efforts to relocate them are not possible. I am very careful not to

dose up on days when I am in that office, as one never knows what cats may

harbor and spread, etc. Besides, the whole office is a petri dish of filth.

A Rhematologist whom I consulted this summer thought I was lying when I said

that I never had any ISR or other complications.

My problems with Enbrel are the same as they probably would be with Remicade: I

worry, greatly, about long - term side-effects.

But, when taken wisely and according to plan---it's one heck of a good drug.

Jon

________________________________

From: marysue <marysue@...>

Sent: Sun, September 12, 2010 5:19:01 PM

Subject: Re: [ ] Re: Remicade

They are both tumor necrosis factor antagonists. Remicade is given by

infusion, while Enbrel is given by injection. You have to go to a

doctor's office or other place to get an infusion, while you can

inject the Enbrel yourself at home. Enbrel is much more convenient for

me.

Sue

[Guest guest]

Jon,

Can you organize a clean-up effort in which all of the workers there

could pitch in and help clean up the filth?

On Enbrel, I don't get a lot of respiratory infections, but I do get

some strange other infections.

Sue

On Sep 12, 2010, at 5:47 PM, A Z wrote:

>

> I have also never had an ISR or suffered from any infections

> requiring medical

> intervention due to its use. I currently work in a fetid,

> disgusting sorry

> excuse for an office with a mouse-eating cat and its open litter box

> in my

> office. Efforts to relocate them are not possible. I am very

> careful not to

> dose up on days when I am in that office, as one never knows what

> cats may

> harbor and spread, etc. Besides, the whole office is a petri dish of

> filth.

[Guest guest]

Don't have a lot of advice, but my daughter (who is 9) has been on Remicade

since August, and it really seems to be helping keep her blood levels close

to normal, and she seems more energetic. She had been on Humira for almost

a year, but though it helped with the uveitis she had, her blood levels got

worse while she was on it, and she had more flares. Hope the Remicade helps

you as well!!

Lori

[Guest guest]

" elaine " ,

Remicade was the first of the really expensive medicines I took. It did wonders

for my pain and stiffness on the very first dose. After 5 years I built up an

immunity and had to switch to Humira where I've been for about 6 years. While

Remicade took care of my pain, it didn't seem to help my psoriasis at all.

That's when methotrexate was added along with some topical ointment. My

arthritis pain was about a 7 before the Remicade - down to 1-2 for the first few

years. My psoriasis has never been bad - being told once that on a level of one

to ten, I was at 2.

Good luck!

Jim

[Guest guest]

Thanks everyone. My doctor didn't say anything about taking methotrexate, I'll

guess we'll wait and see. Am still waiting approval from my insurance company.

Although my skin is really not that bad, I do see a dermatologist and am

currently using Olux-E and Taxlonex for the skin and get steroid injections in

the really bad spots which help alot. My biggest concern with all of this stuff

is getting lymphoma. Life is not easy . . .

[Guest guest]

I've been lucky never to have taken Remicade but I managed to get non-hodgkin's

lymphoma anyway !! 4 + years and I'm still clean Yup, life isn't

easy.......

[Guest guest]

Hello All,

I am getting ready to start remicade, (I hope) and I have read about all the

side effects, but is there anything I should know about when I am actually

getting the treatment? Any immediate issues?

Thanks

Heidi Hart