Starting remicade

[Guest guest]

Hi, Rhonda:

I completely understand your nervousness. I was into panic at the

thought of starting Remicade, which I did just one month ago. My second

treatment was Thursday. I know there are many people on here who have

been on Remicade far longer than I have been and can offer amazing

advice. I, on the other hand, can only offer the fresh in my mind

experience of what its like to start it.

I was terrified. Of everything. The needle, the room, the nurses, the

medicine (would it burn like Humira?), how sick would it make me? Was

all this worth it? Even the medicine smell of the room upset me.

Procedure day I've wept the entire 3 hours, more or less. And that after

taking 10mg Valium..However, I don't think my experience is normal. If I

weren't so severely afraid of IVs and needles it would have been totally

fine. Everyone else in the room was fine, more than fine, actually;

certainly no one else was a big baby like me. Bring a book or they will

have a tv. Lots of people slept in their recliners. When they pull out

the IV there's only a few drops of blood and my wrist didn't hurt or

bruise afterwards.

As for afterwards, I feel wiped out, all wrung out. I just want to lay

down and sleep, which I do, for days more or less. It makes me nauseous

for several days afterwards and also intestinally distressed, which I am

not sure is typical. Last time I felt bowled over for a week, but the

next week I felt more energy (tho still nauseous etc). Also, I noticed

this time that diet drinks taste awful to me now, like chemicals and

metal and not like Diet Coke (I have no idea if its related to the

Remicade, but I am a 5 Diet Coke a day drinker and they don't taste

right to me as of yesterday)

That's the downside, which I am fine with because it does seem to be

working. The first treatment the lessening of the pain was pretty

subtle, but it was there and any less pain was A-OK with me. By the end

of the 2 weeks I could feel the stiffness coming back, but it was still

better than it had been. After this second treatment I feel the pain

lessening again, and I am really hopeful it will lessen even more than

last time. My psoriasis (which my Derm said covered 60% of my body) is

lighter in color and seems to no longer be actively spreading,

hallelujiah.

I agreed to the infusions because I was hoping for a Lazarus-like

miracle. So far, its not a miracle for me, exactly. However, its the

quickest improvement I have had so far and I have been on MTX,

Prednisone (well, that was pretty miraculous on the joints but the side

effects are not good), NSAIDS, Humira, etc. After just 2 treatments I

went from immobile and in terrible pain all day, every day and now I am

able to walk (still with pain, but better), my toes are no longer

sausages, and my hands and wrists do not look like baseball mitts

anymore. My Rheumatologist told me to " keep the faith " . And since Humira

did nothing, absolutely nothing to help me, I am grateful for any

improvement! I can put up with the nausea etc as a trade off for moving!

:-)

I hope it works miracles for you; for many people it does. And don't be

scared because its not bad :-) The nurse told me that many people think

of it as a quiet relaxing " spa day " .

Carla

[Guest guest]

Your doctor may already be doing it, but thought I'd mention that

there are pre-meds that can be given before your Remicade that help

with nausea, etc. You might want to ask!

Cheryl M.

[Guest guest]

This is interesting. My rheumy and I just discussed Remicade -- and she

didn't recommend it. She said it had the same basic properties as Humira

(which I'm on) and that the biggest difference was that you got the Remicade

in one big dose, whereas with Humira, the dosage is spread out over a period

of time. She said most people had more side effects with Remicade and that

if there's a major issue, it's harder to take someone off it quickly. For

example, if you get sick, the Remicade is in your system and treating

certain illnesses (i.e. bronchitis) is more difficult. With Humira, you can

stop a shot or two if you get ill.

It's interesting hearing your experience.

Patty

[Guest guest]

Just thought that I'd add this info. I am new to Remicade and will be going for

Infusion # 4 on May 23 rd. I am given 2 Tylenol Tablets, 2 Aerius Tablets 10 mg

, prior to each Infusion and also a small bag of Steroids through Infusion also

just before the Remicade. It is suppose to cut down on the Nausea and fatigue.

So far it has worked for me .Good luck !

Questions - Has anyone had there Temp go up at each Infusion of Remicade ?

Mine has each Infusion so far > Was wondering if this was common ? Also , how

long did Remicade take to start working for PA ? I have 0 Psoriasis for the

first time in 33 years and it was Severe . Amazing to say the least what

Remicade has done for P. Thanks & be well !

[Guest guest]

I've been in remission for 3 1/2 years on nothing but naproxen and

methotrexate, but I've gone " active " again and my Rheumy wants to

start me on Remicade next month. He is trying to get me into a

study.

I wanted the infusion, rather than injections because my insurance

(medicare part D) doesn't cover much if you have to take it to a

drugstore and fill a prescription, like Enbril. The infusians are

covered under my Part B, apparently, since it is an in-office

procedure.

Anyone out there using Remicade?

Sharon