Peggy Baggins had her 1st Remicade treatment

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 10/8/2009 2:29 AM (GMT -7)   
Hi to everyone that has listened, been supportive and helped with information prior to my treatment.  The first one is in the bag now and all went well. Not half as scary as I thought it would be, with no adverse effects during the treatment. I feel very tired but that's a small price to pay. Staff, doctors and nurses were so friendly, helpful and informative the whole way through. I even meet another person with AS, which was so good as I hadn't met or knew of anyone else with this condition.  Just been told to rest up for next 48 hours and given a number to ring if I feel any one of the side effects they listed for me.
 
Next one in two weeks, followed by 4 weeks and then every 6 weeks.  All say it's a wonder drug and will help me no end. Time will tell.
 
So 'thank you one and all' for all the support and I hope your days ahead are happy and pain free.
Peggy Baggins. smilewinkgrin

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 10/8/2009 5:05 AM (GMT -7)   
Go Peggy, well done. Fingers crossed that all goes well for you and the remicade works beautifully. Do you feel the effects straight away? Or does it take a couple of treatments to kick in?
Be sure to let us know.
My rheumy mentions remicade to me if the humira doesn't work as well anymore, so very interested in how it goes for you too.
Best wishes, Peggy, golitho

peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 10/8/2009 4:56 PM (GMT -7)   

Hi Golitho,

Thank you. They say it can take effect anything from 2 days to 2 months. Time will tell. Woke feeling like I'd done 10 hours in a gym this morning, tired and slight pins and needles in the skin,(all explained as normal). Otherwise all's well with nothing dreadful so far.

I will let you know how it goes as time progresses. Take care and thank you for your kind words.

Peggy.


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 10/10/2009 10:09 PM (GMT -7)   
Hi Peggy, some of the fatigue that comes with the infusion  lightens over time (so I'm told). The Benedryl can do a number on you as well.
 
Glad the first infusion went well. hope you get some great results from it. I used to take it and it was truly a miracle drug. I had results with my psorisis instantaneously, my IBS-type symptoms (they called it microscopic colitis or something) and joint problems improved greatly by the 3rd infusion.
 


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 10/11/2009 6:20 PM (GMT -7)   
Yeah for you Peggy, hopefully this is the med to put you into remission :)
Sorry your trip to Spain wasnt as pleasant as it should have been.
Keep us posted.
Jo
Crohn's Disease
Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone


peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 10/11/2009 10:00 PM (GMT -7)   

Hi CaMama,

Your so right about the psorisis clearing up. I had the treatment Thursday and my knuckle, toes, elbows and knees were all very sore, bleeding etc and by Saturday it's 50% better and hardly anything there!  The severe lower back pain over the last few days has certainly calmed down and I'm more able again to get out of bed without holding on to the furniture etc.  I'm hopefully that with a few more treatments things in other areas will improve.

Hi to you also Sydneyjo, any kind of relieve would be good so thinking very positively.  Spain wasn't what I remembered but then it was the company that was important at the end of the day. My only sister lives there and she has these past weeks been undergoing tests for AS herself. I hope to god she hasn't got it, but if that's the case something is very seriously wrong with her.  I'm her sounding board and will guide her in all things to make sure she get some results one way or another, what ever it is that's stopping her from having a life. Results this week as the health system over there isn't anything like it is here, you have to wait weeks before they tell you anything.

I hope both of you enjoy a pain free week, and thank you for being there to listen.

Peggy. wink   


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 10/14/2009 4:49 PM (GMT -7)   
Oh Peggy I hope your sister isn't inflicted with this as well, I know I wouldnt want anyone I love to have to go through the things I do. One small comfort is that she has you to love and guide her through it.
Hope you are feeling good from the Remi :0
Jo
PS - I will be staying down your way on Saturday night for my FIL birthday - is it still cold at night? (it still is here)
Crohn's Disease
Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone


peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 10/14/2009 8:00 PM (GMT -7)   

Hi Sydneyjo,

I fully agree with you, I will be so upset to think she has the same as me....Last two days I've been to see my specialist. First trip was to assist in a case study of AS for a 3rd Year Medical Student (I feel they have to learn from somewhere to be good doctors). It was as informative for me as it was for him, he gave me my readings on the measurements they take and scores I obtained.  Good on some and not at all good on others. Seems my AS is now effecting my upper spine/neck as I I can't move my head left to right very well. Never mind you just keep plodding on. Yesterdays visit was a follow up to the 1st Treatment.  The specialist there mentioned to my doctor that my feet were in poor shape and seems I have it in both feet now! We still keep smiling :-)

As for the weather here, well I've told friends we're having here at the weekend to bring layers!  It's actually quite warm at the moment with a little wind. Sunny and bright with little cloud.  Temps of up to 22/23C tomorrow until  Monday, only a small chance of rain which I don't think will happen. I hope you have a great visit and rest up.

Take care and will be thinking of you...by the way what's a FIL Birthday? tongue

As for how I'm feeling, much better in the back already, although my specialist says his fingers are crossed for the feet, if not we have to up the MXT again....

Peggy


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 10/15/2009 1:31 PM (GMT -7)   
That case study sounded interesting, I would like to participate in something like that - just that bit more information they can tell you.
FIL= father in law - sorry ;)
I was looking forward to this night as the dinner party is being held by his brother who is a chef, but I have just had the worst few weeks with my Crohns disease and am only now just tolerating a very light diet, so will have to be very picky about what I eat there :( Also concerned about staying in someone elses home while like this (having to repeatedly use the bathroom UGH).
Your weather sounds the same as here at the moment - could really do without the blustering wind though.
Sorry to hear your feet are troubling you, hopefully the Remi will kick in for that and you wont have to head down the MTX path.
Have a great weekend with your visitors :)
Jo
Crohn's Disease
Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone


peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 10/15/2009 10:26 PM (GMT -7)   

How disappointing for you, I'm so sorry your not feeling too well. Isn't it always the way, just when your looking forward to something and then 'bang' a problem arises. I fully agree with you re: bathroom situation! There's nothing like being in your own home when like that. The Mxt has that effect on me, either can't go or can't stop going!....

I've had a call from my sister who had the results: she's clear for everything, no sign of AS or anything associated with it, which is great on one hand and a concern on the other as she is in great pain throughout her body. I asked what they were going to do now??? typical UK health system, nothing as it turns out she had to see a trainee GP in the surgery who said she could have an appointment to go to the pain management clinic to help with her posture etc, which might help the pains....They wont do an MRI (too expensive) and the trainee GP said if she isn't happy after the appointment with the clinic she can always go and see her usual GP when he's in! I'm so mad as she has on going problems with veins in her leg and had many operations already.. As it was the GP said she was lucky they did the special X rays as they were expensive to the NHS and had to be sent up North to a specialist... I wish she was here, our medical system is second to none in the world, I know people think otherwise sometimes but believe me it's worst overseas.. Anyway my husband says I shouldn't worry I have enough on my plate and she's an adult, which is all true.

I've a terrible headache at the momentand seeing stars etc, going to lie down and have a nap. Enjoy your weekend, it's been a little bit showery otherwise, warm and very sunny.

Take care and look after yourself.

Peggy. smilewinkgrin


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 10/18/2009 11:08 PM (GMT -7)   

Hi Peggy,

Maybe your sister has Fibromyalgia, that sometimes presents like AS, Ive heard. Not sure of how you test for that though Glad for her that it isnt AS, but still scary when its still the unknown.

Hope you are headache free now.

Had a lovely time at my father-in-laws birthday down your way. What a beautiful part of our country you live in - very peaceful and just the tonic I needed at the moment - in fact I was reluctant to come home :-)

The weather was lovely, a bit of rain Saurday night, but nice anyway. My Crohn's Disease behaved OK so I didnt embarrass myself at the dinner party, just stunk the family out of the guesthouse we stayed at later that night smilewinkgrin

As I said, hope you are feeling better.

Jo


Crohn's Disease
Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone
Bowel Resection Sept. 07


peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 10/19/2009 12:11 AM (GMT -7)   

Hi Jo,

thanks for that bit of information I'll look it up and maybe if I think it's appropriate send the details to her...  I'm glad your weekend turned out well and you weren't too sick. It was as you said a lovely weekend weather wise and a beautiful part of the country to live in.

I'm laid up on the sofa at the moment as I had to work today. Well I work most days, but from home and don't do the business trips I used to as I'm not good on my feet all day anymore. Having said that I had to train a new member of staff today and out all day. By mid afternoon I could hardly put one foot in front of the other and was near to tears with pain. Which also meant I had to explain to some degree what was wrong (which I don't do as a rule). Therefore, I eventually managed to drive home, make a cuppa and have been laying here since. I've ordered a take away for our dinner this evening as I don't think I could stand in the kitchen. Soon off to have a bath and try and soak the pain away. I know it doesn't do any good, but mentally it helps. My husband isn't very happy with me, but as we run a business together and no one else can do my job what can I do?? In the real world I'd love to give up altogether but that wont happen for a while. Thankfully my staff are all over the country and I don't see them other than a visit to them once a year, so I've managed to get away without saying anything to anyone.

I have my second Remicade treatment on Wednesday so looking for some sort of relief with the pain!

Enjoy the sun shine in Sydney today and take care of yourself.

Peggy. wink


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 10/19/2009 9:29 AM (GMT -7)   
Hope you recover quickly. Glad you were able to visit w/o too much trouble from the chrons.
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, December 05, 2016 1:36 AM (GMT -7)
There are a total of 2,732,866 posts in 301,064 threads.
View Active Threads


Who's Online
This forum has 151217 registered members. Please welcome our newest member, antknight.
206 Guest(s), 5 Registered Member(s) are currently online.  Details
Mews2much, getting by, MarcCrisp, JaxCalvin, YiyiBoo


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer