Remicade Treatment

[Guest guest]

Good luck Tery,I hope and pray this is the med that will work for you.

Hugs

June

[Guest guest]

Hi Tess, Hope your IV Remicade treatment went well, had to prostpone my V

treatment from today, Friday, 2/08/02 until next Friday, Feb 15. bcause I had

a sinus infection. I am much better now. I hate to have to put things off.,

but sometimes it can't be helped.

Have a good week end.

Be Blessed,

Becky

[Guest guest]

Hi Becky...The Remicade infusion went really well. Just a few days

after my first one the swelling began to subside in both hands...still a

little problem with both index fingers. But this does look hopeful.

The MA doing my treatment said I may begin to have more energy soon. Oh

how I hope so. I am so very overweight, and perhaps more energy will

help me move more so the weight will come off, along with eating

healthier.

Get well soon.

Hugs & Hope...

Tess

[Guest guest]

Hi Friends...last night was bad...much pain in lots of joints and

fingers swollen again. I understand that the first couple days after a

Remicade infusion can be a little difficult...perhaps that's just what

is happening and things will improve in a few days.

I was so happy to see " skinny fingers " (believe me, nothing on me is

skinny! But the swelling was down so much they looked beautiful to me!)

In a few days, perhaps they'll be back.

I am very grateful to have found you all. I don't feel so alone, and I

know you understand. God bless you all.

Tess

[Guest guest]

Shirley,

Thank you for posting and sharing that you're going to start Remicade on

Monday.

I will be thinking of you and I'll look forward to you checking in here with

how it went for you. I hope you have wonderful results right away also.

Vicki

[Guest guest]

I had my first Remicade injection on Monday April 8th.

I have not felt any relief yet. I go for the 2nd on

this Monday April 22nd. I hope I feel relief after

that one. I am taking Demerol pills to get to sleep at

night, and just dealing with the pain during the day.

I am also on MTX, 4 prednesone pills a day. My Reumy

has prescribed Bextra (the newest of antinflamitory

drug). Azulfidine (full dose) and something else I can

not even remember what it is called.

With all of that, I am still in constant pain. I am on

the list for Enbrel, but my reumy says it may be

August before I can get it. Maybe the Remicade will

start working soon, and I can be ready for the Enbrel.

Wishing me and everone else GOOD LUCK!!!!

--- Vlarson169@... wrote:

> I had my first Remicade IV Therapy Tuesday. I could

> not believe how good I

> felt after only 24 hours! " Suddenly " I could

> actually walk without support

> and walk without pain. I could actually get out of

> a chair without help. I

> could roll over in bed at will and I could sleep all

> night because I didn't

> hurt. I suddenly feel my age instead of feeling 20

> years older than I am!!

> It seems like I don't see a lot written in this

> group about Remicade...

> mostly enbrel. It seems to be a good alternative,

> since enbrel is so

> difficult to get. Is there a reason more of us

> aren't on the Remicade

> therapy? How many are and/or were and what are your

> experiences?

> Vicki

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

__________________________________________________

[Guest guest]

Hi Vicki,

I know what you mean about the Remicade infusions. I too was at the

end of my rope from all the pain, stiffness and lack of life I was

having at 39. The joke at our house is that I may have been only 39

years old as far as the calander was concerned, but I switched the

numbers around to show how I felt physically--which was every year of

93!!!!!!!!

I had my first dose of Remicade 2 weeks ago, because I could not

wait until the end of July when the makers of Enbrel would finally

consider filling my perscription from this past December. I was a

little sick to my stomach for 2 days, but woke up the next day and was

not crying with pain and was able to get out of the chair like a normal

person should be able to. For the first time in months, I washed my own

hair. I can't believe how much better I feel with the Remicade in me.

There also seems to be an added bonus--as if I needed one with the pain

being gone and looking and feeling normal,--but my skin cleared itself

with 7 days of getting the first infusion. I know that many people do

not want to take the infusions, because you have to go to the hospital

for about 4 hours to get it and you may get sick to your stomach and I

am personally soooooo tired for days after getting the treatment, but it

sure beats the unbearable pain, stiffness, swelling and lack of

movement. I know that the people who put in the needle to get you the

medication, numb the area first, which makes it better and much less

painless than giving blood. I too am very excited about feeling well

for the first time in years. I still have complaints in my joints when

I do things I really should not be doing with them--like over using my

hands or being on my feet too long, but it is NOTHING compared to life

before the Remicade.

I do plan on getting the Enbrel as soon as it becomes available to

me though, as I hate to spend the 4 hours at the hospital and I think

life would just be easier for me being able to do it at home, rather

than having to go to the hospital. I also know that for me, the Enbrel

is cheaper compared to the Remicade. The tech told me that the Remicade

was costing our insurance about $3500 each time I have it done, because

I am not a thin woman and the medication is based on your weight. He

said that so far, the cheapest Remicade he has given was about $2200 for

the treatment. I like how well the Remicade works, but if I can get the

convience from the Enbrel and it is cheaper, than I will be switching to

it when it becomes available for me. I also thank God for my

insurance. We could not afford the expense of this treatment and I

would be literally bedridden without it.

I really do agree with you Vicki. I am soooooo glad that you are

feeling better with the Remicade. I hope this continues for you and

that you are able to do the things that for so long seemed like they

were a part of the past. I have a feeling that you and I are going to

be enjoying life a lot more with Remicade in our life.

Shirley Duval wrote:

>

> Hi Vicki, Thanks for the post. I start my Remicade treatment this

> coming Monday. Your post has made me feel better about going on

> Remicade. I have been a little scared about it and am glad to hear you

> have gotten such good results. I will post on Monday or Tuesday about

> my experience wit it. Thanks again. Shirley in VA

> Vlarson169@... wrote: I had my first Remicade IV Therapy

> Tuesday. I could not believe how good I

> felt after only 24 hours! " Suddenly " I could actually walk without

> support

> and walk without pain. I could actually get out of a chair without

> help. I

> could roll over in bed at will and I could sleep all night because I

> didn't

> hurt. I suddenly feel my age instead of feeling 20 years older than I

> am!!

> It seems like I don't see a lot written in this group about

> Remicade...

> mostly enbrel. It seems to be a good alternative, since enbrel is so

> difficult to get. Is there a reason more of us aren't on the Remicade

>

> therapy? How many are and/or were and what are your experiences?

> Vicki

>

>

>

[Guest guest]

.

I hope the Remicade starts working for you soon. Apparently it can take

numerous infusions before it takes effect and I'm feeling very fortunate that

I had some relief so quickly. Best of luck to you.

Vicki

[Guest guest]

,

It sounds like a couple of us have started Remicade within a few weeks of

each other and Shirley is about to start. I hope it starts working for

soon and that Shirley has good results as well. I don't even mind the time

it takes to go have the IV therapy! I took a book and it was very relaxing.

I don't foresee this as a problem for me but I'm retired and that makes a

huge difference. If I was still working, it would be very inconvenient.

I'm very glad to hear your skin cleared up! I'll look forward to that. I

thought it seemed a little better already but I wondered if I was imagining

things. It's hard to believe how quickly this has worked. I didn't have

much hope but I agreed to try it. I'm so glad I did.

It's incredible how expensive these treatments are! I don't even want to

think about what it would be like to not have insurance. I wouldn't be able

to get help, that's for sure. I am thankful for the insurance and for the

treatments I'm getting and I am so very grateful that I'm feeling much better

now. I am enjoying life more already!

Best to you! Vicki

[

[Guest guest]

Me Too!! I had my first Remicade treatment on Tuesday, 4/16. Other than

being a bit tired (from Benadryl), a bit " flushed " (normal), I knew almost

immediately that I was going to feel much better! And, I do just these few

days later. So much better that I forgot to take my Friday, once per week

dose of MTX! I know this Remicade is going to do the trick. And, now that

the Neurontin has kicked in, my neuropathy has gotten enough better that I am

able to sleep - Will wonders never cease! Can't wait til my next Remicade

treatment, which they promise will not take 4 hours this time. Toadessa

[Guest guest]

Toadessa,

I am so very very happy for you and I hope you continue to improve with each and

every infusion.

Shirley in VA

Toadessa7@... wrote: Me Too!! I had my first Remicade treatment on

Tuesday, 4/16. Other than

being a bit tired (from Benadryl), a bit " flushed " (normal), I knew almost

immediately that I was going to feel much better! And, I do just these few

days later. So much better that I forgot to take my Friday, once per week

dose of MTX! I know this Remicade is going to do the trick. And, now that

the Neurontin has kicked in, my neuropathy has gotten enough better that I am

able to sleep - Will wonders never cease! Can't wait til my next Remicade

treatment, which they promise will not take 4 hours this time. Toadessa

[Guest guest]

I, too, have started Remicade recently. I had my first infusion on April 2. I

noticed that first week that I wasn't still and sore in the morning. I wasn't

sure whether it was really working so fast or if I just WANTED it to work so I

was imagining it. When I went for my 2nd infusion on April 15 I asked the

nurse if it was possible it could be working so fast and she said yes. I am

still on MTX and Endocin but my Rhuemy says after the 3rd infusion we will start

to wean off them if the Remicade is working, which it definately is. I have the

arthritis mainly in my hands and feet and just after this short time on Remicade

I can't really remember the pain. Sometimes I start to think maybe I'm in

remission, but then I remember how it was before Remicade. It's not perfect

now, but it sure is nice to wake up and be able to move. I can see the bone in

my wrist for the first time in months. My wrists and hands are not swelled up

like they were before. The few patches of psoriasis that I had are now gone

also. I do have permanent damage to my joints but Remicade is supposed to stop

further damage. My old Rhuemy did not see the urgency in stopping it and that

is why I have the damage I do. My first appointment with a new Rheumy and he

said my wrists were so swelled up they were pinching the nerves in my hand and I

was loosing use of both hands. He gave me a cortisone shot and that helped for

a couple months but then the swelling came back. I finally got approved for

Remicade and here I am. I have had virtually no side effects. The first

infusion I got a headache during it and they slowed the drip down and it went

away. The second one I had no problems. They come in about every 20 minutes

and check your blood pressure and see that you are okay. I have been tired the

day I have it done, but other than that, it is only the inconvenience of having

to go have it done. After the next one I will only have to go every 2 months,

so it won't be too bad.

Good luck to everyone who has started this and will be starting it. It has made

a world of difference for me!!!!!

[Guest guest]

YaHoo Toadessa,

I'm so glad you're doing better too. You know... when I was having my

infusion there was a lady there that was just finishing up with hers. Her

husband was waiting for her and the three of us was visiting a little bit.

He happened to say that this drug was like a silver bullet for his wife. I

thought, " Oh yeah, sure. For her maybe... " But that's how I feel now too...

it feels like it's been a silver bullet for me. Unbelievable, isn't it?

Vicki

[Guest guest]

Shirley,

Only a couple more days to go now before you get your infusion. Thinking of

ya!

I can see where you'd be a little nervous after you said you're allergic to

so many meds. The nurse really stuck close by though and I'm sure it will be

the same for you. The infusion nurse I had knew a lot about psoriatic

arthritis and she knew Remicade well and what to do or not do. I assume

you'll have the same good care.

I've got my fingers crossed for you.

I was not so nervous when I went on this. I was feeling so badly and so

tired of hurting that I was ready to give it a try. I can remember how

terrified I was to go on Methotrexate though so I can empathize with you.

A rheumatologist I had once said, if we can control the psoriasis - we can

control the arthritis! I'm still not real sure of that, but it did seem as

though my arthritis was/is worse when the psoriasis is flaring. Interesting

though - I'm feeling much much less pain now after the Remicade infusion and

yet my psoriasis isn't all that much better - yet. So, go figure.

Continue to hang in there. Hugs, Vicki

[Guest guest]

Hi Jeanne,

Glad to hear that Remicade is working for you too. Thanks for sharing your

experience. You know, something you said kinda struck home. You didn't know

if it was really working that fast or if you just wanted it to so maybe you

were imagining it. When I was having my infusion, the nurse was telling me

how fast it " could " work. She said it was not unusual for people to notice a

difference before they even got out of the chair. I listened with hope but

was still skeptical, thinking it might work for others but it probably won't

work for me. I still could hardly get out of the chair when we were done and

I had to stand there in one spot for awhile, waiting for my leg to straighten

out so I could put enough weight on it to limp out of there. But by the time

I got home, I felt better. I wondered if I was just imagining it also but

then I thought... if I can just " imagine " that I have less pain, then so be

it! I'll just keep imagining it then. LOL But I'm not imagining that I

can see my knuckles again and the wrinkles in my fingers. Only someone that

has had lots of inflammation would be happy to see wrinkles!! I love

wrinkles. Wrinkles in my knees, in my hands, in my legs... Bring 'em on.

Vicki

[

[Guest guest]

Will think of you, fear not. I am also allergic to many meds, penicillin,

sulpha, cortisone, morphine. Had no big trouble with Remicade. Love it.

[Guest guest]

Me too, to all you said. Funny think happened. A friend, artist type guy

who does wonderful things from wood, made me a beautiful " walking stick "

(refuse to say " cane " ) and brought it to me last night, knowing how bad I was

getting and wanted to help. I could not tell him how well I felt -- he had

put so much work into it and it truly is a work of art. I think I will wait,

and then tell him his stick had magic in it and helped me get well. Whatcha

think of that little fib?

[Guest guest]

My first treatment went well - but I was there 5 hours. I always have very

low blood pressure, so that presented a bit of a problem when it dropped, but

then came quickly back. It has been one week since the first treatment, and

I feel so good, unlike anything I can remember in 10 years. Glad to not

inject anymore, and that Arava was worthless. Can't take anything with

Sulfa, so this is it for me. Can't wait til next treatment. And, it is after

9 pm and I am no where near ready to go to sleep. I have been staying up

later and later, unlike pre-Remicade when I could barely get my son to bed

before I crashed! Keep up the faith.

[Guest guest]

Vicki,

Thanks so much for the support. I do believe I feel a little better today. It

might be my imagination, but who cares why........just the fact that I think I

feel better is worth something. My schedule is just as you said. I guess that

is the normal protocol. The nurse said the only thing that would stop the next

infusion would be if I were sick and that depended on what was wrong.

Apparently they are mainly concerned about infections you might have. Again,

thanks for the support. I really needed it. Now that I know what it is all

about, I can support others.

Take care and feel better each day!!!!

Shirley in VA

Vlarson169@... wrote: Shirley,

I'm glad that first infusion is behind you and that it went well (except for

the blood pressure dropping). I guess that's not an unusual thing to have

happen. I expected that to happen to me because my blood pressure has taken

a dive when I've had other tests and procedures. It didn't this time for

some reason. Anyway, I'm glad you're not anxious about having the next one

now. Is it in 2 weeks, then 4 weeks and then 8 weeks after that? Thanks for

posting and giving the update. I really hope to hear from you soon that

you're feeling a difference - for the better. Take care. Vicki

> Vicki,

> Thanks for the pep talk. Well, I got through the infusion, but not without

> some problems. I did not get sick or anything but my blood pressure kept

> going down, down, down, so they slowed down the infusion. With the blood

> pressure going so low, I got really tired and slept through most of it. LOL

>

> When I finally left the doctor's office after being there for 4 hours, I

> felt like nothing had ever happened. I am hopeful it will help the pain.

> So far nothing has changed but there is still tomorrow and who knows, I

> might be better then or it might take a couple of treatments for me, but at

> any rate, I am no longer afraid to have the infusions now. The nurse was

> great and kept a good eye on me. Again, thanks for the pep talk. Glad you

> are doing better. Lots of hugs back to you.

> Shirley in VA

>

[Guest guest]

Hi Shirley and Vicki,

Best wishes to you with your Remicade treatment. I guess that you will have

more

continued improvement. I can say that because I have had that type of

progress since I had my first Remicade IV treatment on March 11, 2002, my

second on 3/25/02 and my third on 4/22/02. If you have any questions for me,

I would be happy

to answer them.

Sincerely,

Bill Reid in DC

[Guest guest]

Toadessa, I am finding the same thing. I have so much more energy. I have

done more projects around the house in the last week than I've done in a few

months! I don't dare sit down though (LOL) or I want to fall asleep,

especially about 3:00 in the afternoon. But then, I've been getting up by

7:00 too... ready and rarin' to start the day.

Shirley, I'm so glad to have seen you post and that you think you're feeling

better today. I hope it gets better and better for you. Keep us informed as

to your progress. I wish everyone could feel like I feel right now.

Vicki

[Guest guest]

Hi Bill, Thanks so much for writing. I had my first infusion on Monday with

no problems except my blood pressure kept going down down down so they had to

slow the drip down. Basically it was a piece of cake and I had been scared

before I started the treatment with not knowing what to expect. I had a ton of

allergies and of course my frear was I would be allergic to it, but thankfully

that did not happen and I came through the whole thing with flying colors. On

Tuesday(yesterday) I thought I might be feeling better, but today(Wednesday) I

was in just as much pain as I hae ever been. My questions are.....Should I be

concerned I don't feel any better? Could the second infusion help with the pain

even though the first one apparently didn't help? Is there a build up of

remicade in your body? When should I expect blood work to be done since reicade

can cause your white blood cell count go very? Did you get immediate results or

did it take longer? Any information would be greatly appreciated.

Thanks so much,

Shirley in VA

wreid2@... wrote: Hi Shirley and Vicki,

Best wishes to you with your Remicade treatment. I guess that you will have

more

continued improvement. I can say that because I have had that type of

progress since I had my first Remicade IV treatment on March 11, 2002, my

second on 3/25/02 and my third on 4/22/02. If you have any questions for me,

I would be happy

to answer them.

Sincerely,

Bill Reid in DC

[Guest guest]

Hi Shirley,

On March 11, when I had my first infusion, I was taking Arava, prednisone,

and methotrexate. After a week, I gradually felt much better with less

stiffness, and more

range of motion in my upper right arm that had been very sore and stiff.

Also, I had a

negative reaction to the TB test injection I received on 3/11/02. About a

week after my second infusion, I had less stiffness and more strength in my

fingers. As you said, each infusion serves as a booster shot to continue the

work of neutralizing the

inflammatory cells within our bodies that started with the first treatment.

So, based on the extended time schedule of treatments, it seems that the

Remicade process

of medication takes at least two weeks to reach all parts of the patient. In

my case,

my doctor said I could stop taking Arava after the first infusion, and cut my

dosage of

prednisone in half after the second. Moreover, for your information, in 1998

I had both

double hip and double knee replacement surgeries within a three month period

at the

age of 55. Now I feel better than I did when I was first diagnosed with PA in

1994. But, now I am being treated for diabetes and osteoporosis, due to the

prednisone I have been taking since 1994. Nevertheless, I can walk within my

home without any assistance, and I usually use a walker when I go outside. I

hope that you have much

success with Remicade as time goes by.

Sincerely,

Bill Reid