1st remicade treatment

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Our3sons
New Member


Date Joined Sep 2009
Total Posts : 2
   Posted 9/15/2009 3:57 AM (GMT -7)   
I had my first remicade treatment a week and a half ago. After two I was feeling great. That feeling lasted a week, then I started feeling bad again. Has anybody had this experience?

Our3sons
New Member


Date Joined Sep 2009
Total Posts : 2
   Posted 9/15/2009 7:52 PM (GMT -7)   
It should have said two days

SarahObear
New Member


Date Joined Sep 2009
Total Posts : 14
   Posted 9/21/2009 4:34 PM (GMT -7)   
I started on what my doctor called dosing visits. I had my first one, then two weeks later my second, then 4 weeks later my 3rd and then 8 weeks for my next. It stopped working around week 6 and got really bad this past weekend so I'm back on prednisone until I go in for my dose Wednesday.

If you're feeling bad you should talk to your doctor.

peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 9/26/2009 8:14 PM (GMT -7)   

Hi I'm just about to go for my first treatment of Remicade and not sure what to expect? Any information you can give me would be helpful. Will I feel tired, sick or just plain old normal (what ever that means when you have AS)?  I've not had an injection of Humira for over 3 weeks now and my back is starting to play up yet again, the problem in my right foot has never been pain free so hopefully the Remicade will help both sections.  I've just returned from travelling overseas and while there had the worst trouble with pain.  For the last 16months I've been very careful not to over do the walking, working etc as I'm with pain 24/7.  Having been away for over 3 weeks and on my feet most of the time visiting friends and family it's been hell!!! Very swollen and intense pain.  Thankfully I got to lay down on the plane both ways and rest my foot which helped a lot.  Since returning home I've been trying to rest up and it's better but not good.  I do hope that the new treatment will work as my specialist has tried everything thats possible, obtainable and even took my case overseas to see if there was anything new there, which wasn't the case. So fingers crossed.

So if anyone out there has any advice on how to cope with this treatment or things to ask I'd be very grateful.

I hope you all have a better day today than the last.

Peggy Baggins


SarahObear
New Member


Date Joined Sep 2009
Total Posts : 14
   Posted 9/26/2009 8:24 PM (GMT -7)   
Hey Peggy,

So I can only speak for how my doctor works. I go in and they weigh me, take my temp, pulse, and blood pressure. Then if I want (because some people need it) they offer benadryl and a dose of tylenol. Then they start the IV take a few vials of blood and let it run. The first time took close to 6 hours between getting a needle in my arm and the dose running thru. This last time I was in and out in about 3 hours.

It's really made a difference for me for weight reasons. I hope it works for you. Just be sure to take care of yourself and get lots of rest after the treatment. That seems to make a difference in how I feel for the week to come.

Feel better soon!!

Sarah
Once you choose hope, anything's possible. ~ Christopher Reeve


peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 9/26/2009 8:27 PM (GMT -7)   
Thank you so much Sarah, any help if good as it's much better to form a picture in your head. Although I realise that it's different for everyone at least I can have a fuller knowledge of what their doing and why.
I'll let you know what happens??
Peggy

SarahObear
New Member


Date Joined Sep 2009
Total Posts : 14
   Posted 9/26/2009 8:30 PM (GMT -7)   
I'll look forward to hearing how it went.

Truth be told...I'm never upset about it. My doctor has nice recliners and blankets...so that and a good book. It's like a break from everything while you're doing something that we all wish we didn't have to, but it's better than no treatment.

(((Hugs)))

Sarah
Once you choose hope, anything's possible. ~ Christopher Reeve


peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 9/26/2009 8:43 PM (GMT -7)   
my husband god bless him says he is going to stay with me the whole time while I have the first one, I've tried telling him that sometimes that's not possible and could be very boring but I'm lucky I suppose as he says he loves me and wants to support me. I think he's more scared of it than I am? Although saying that it's not something that I would necessary chose but I have no option as we have tried everything else. I really need some kind of life back I'm only 53 and thats too young to have a disabled sticker on my car and not to be able to walk very far and do every day things out side in the garden because of the pain. I sound dreadful don't I as there are many more people worst off than I am. Just feeling a little bit scared of the unknown myself.
Peggy

SarahObear
New Member


Date Joined Sep 2009
Total Posts : 14
   Posted 9/26/2009 8:54 PM (GMT -7)   
It's ok to be scared. I get worried about people who show no fear in the face of something that seems so obtuse. Who would have thought my immune system was so fantastic it got confused? lol My husband is constantly asking me how I am even on days when I'm feeling decent. I know we are lucky to have people who love us when we are not feeling very lovable

I know what you mean about feeling like there has to be more. I just turned 32 and I get salty when I'm out of juice for the day and all of my friends are off to do something I'd enjoy. I just have to keep hoping that my ups and downs will even out for me.

I know you're going to have a good treatment. I felt the difference within a few days and I babied myself for a few days just to be sure.
Once you choose hope, anything's possible. ~ Christopher Reeve


peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 9/26/2009 9:02 PM (GMT -7)   
Im so sorry your so young to have this problem too. But I have to say you've put a smile on my face this morning. lol. Not that your suffering but you just sound a nice person full of hope and that's what we have to cling on to! I believe that 'what doesn't kill you makes you stronger' and this is just a big test for me and I firmly believe I'll pass. lol. I just want some kind of life back, I'll take just a little bit I'm not greedy. lol

Thank you for listening to me and you've been so helpful and cheered me up today. I hope your day goes well if there's anything left of it as it's 2pm here in Australia. lol. Take care and I'll keep you posted.

Here's to a better week for all of us....

Peggy

SarahObear
New Member


Date Joined Sep 2009
Total Posts : 14
   Posted 9/27/2009 12:25 PM (GMT -7)   
Hey Peggy,

When you posted last it was 10 pm on Saturday night for me. I'm in America.

At any rate I'm so glad you felt better. This site has made me feel a lot better. There is nothing worse than talking to someone about how you're feeling and they look at you like you have 3 heads and just asked for some peanut butter lol.

Keep us posted, k?

Sarah
Once you choose hope, anything's possible. ~ Christopher Reeve


peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 9/28/2009 7:58 PM (GMT -7)   

Well after waiting a week for my appointment to come through to start Remicade I get a phone call from my specialist, who wasn't so happy that my test results for blood test have been mislaid!! shakehead   Therefore to speed things up yesterday I quickly (what ever that means with a painful body) went to his surgery and picked up the forms and had the blood tests for HIV, Hep A,B and TP all done yet again..... Don't get me wrong I didn't mind if it meant speeding up the process but something I could have done without.  Now I have to wait to see if they ring me for an appointment this Thursday or next Thursday.  I'm a little concerned about having the treatment as it is and with the waiting it's doing my head in.  Meantime my body is in pain as I haven't had a humira injection for some weeks as I had to come off that before going onto Remicade.  I told my specialist to try and speed up the appointment and put me out of my misery.

Sorry I'm just sounding off as I know I can here. No need to respond really just needed to express myself. lol.

Here's to a better day tomorrow.

Thanks for listening...... :-)


SarahObear
New Member


Date Joined Sep 2009
Total Posts : 14
   Posted 9/28/2009 8:50 PM (GMT -7)   
Peggy,

I'm so sorry hon. I know that you've been very amped up about this. Things will be ok...it's better to have your tests cleared just to be safe. I hope he can get you in ASAP. I know the pain part of this is pretty rough.

(((Hugs)))

Sarah
Once you choose hope, anything's possible. ~ Christopher Reeve


peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 9/29/2009 3:05 PM (GMT -7)   

those kind words were much appreciated SarahObear, thank you.  Feel better this morning and trying to relax and go with the flow. It's just so many things to change should I go tomorrow at short notice...mind you that doesn't mean I would go, I'll drop everything.  My dear husband asked me several times during the day if I'd heard back, bless him I realised he's as uptight us I am, hence going with the flow as I don't want him to be worrying as well as me (not that I can stop that, hey he loves me)lol.

So just going about business as usual today and if I get the call great, if I don't then I'm sure it will be next week, if I don't hear by Monday I'll ring my specialist yet again as instructed.  My visits and comings and goings with him have been so smooth so I suppose being under the hospital where control is not so tight is something I will have to deal with.  I can't control it, so have to let it go to a degree.

I'll keep you posted.

hugs back at ya!

Peggy

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