Previous Thread
Next Thread
Print Thread
Switching to Remicade
#251869 05/08/13 05:02 AM
Joined: Jul 2012
Posts: 114
S
SteveB Offline OP
Registered Visitor
OP Offline
Registered Visitor
S
Joined: Jul 2012
Posts: 114
Went to see my Rhumy yesterday, she likes what Enbrel is doing for me, but it seems to wear off after a few days and I stiff back up so she thinks Remicade will help? Guess its worth a try, I will try anything at this point if it helps even a little bit. It's been just over a year now since my diagnoses and since I have worked. I trimmed and mowed my yard yesterday since I felt somewhat ok, took me more than 6 hours when a couple years ago I could do it in about 2 hours! I am sure paying for it today though, couldn't hardly get out of bed this morning, my t-spine hips, knees, shoulders, and neck are stiff as heck! I drove to Memphis a few weeks ago, had to stop a bunch and get out move around. Nice to spend a couple weeks with my family that I don't get to see but maybe once a year so it was nice quality time with them. I haven't posted for a while but been checking in and keeping up with the topics. Looking for any advice about what to expect with Remicade, although I know everyone is different and what doesn't work for some, does for others. I understand this, just looking for advise, should I do it at the hospital or at my Rhumys office? Those kind of things.
My SSDI claim is still pending, waiting for a ALJ (Administrative Law Judge)to look it over to see if I will need to go to a hearing or what? This disease has taken about everything from me, my job, Officiating Hockey, my ease of getting around, my finances, and now may be taking my vehicle that I love too! My wife had to have a full hysterectomy a few months ago, so now we cannot have kids either? If there is ever a hospital looking for people for case studies, I am willing to take the chance of giving up my life (in case it didnt go as planned) so maybe others could have the chance to be cured? Just a thought since everything is being taken away from me might as well try to help others?
Wishing all of you a pieceful night and you all are in my prayers!


Dx'd April 2012 Psoriatic Arthritis/Osteoarthritis/Degenerative Disc Disease, my Rhumy said I have had this 10-15 years untreated. Have had Iritis in both eyes since 2007 it comes and goes. HLA-B27 negative. Meds currently taking are oxycodone for pain as needed, Remicade (starting when insurance approves) I also am a diabetic and now have high blood pressure. Failed Enbrel, Humira, Diclofenac, Methotrexate and Predisone. Wonderful wife Sarah, and father to 3 pugs!!
Re: Switching to Remicade
SteveB #251877 05/08/13 10:59 AM
Joined: Jul 2006
Posts: 6,637
Registered Visitor
Offline
Registered Visitor
Joined: Jul 2006
Posts: 6,637
Oh Stve, hopefully, Remicade will help you. I still cut the lawn too and it takes me much longer too. It is good exercise and helps me feel useful.

Remicade has the advantage of being able to adjust the dose much more widely than Enbrel or any of the others. So your rheumy is working for you!!

It is really depressing when you get a couple good days and then the med loses power. To me it is more depressing than if a med isn't working at all. I don't know why, except maybe we are being teased with good days?

Hope it goes better soon. Anna


Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.
Re: Switching to Remicade
SteveB #251879 05/08/13 11:49 AM
Joined: Oct 2012
Posts: 499
O
Registered Visitor
Offline
Registered Visitor
O
Joined: Oct 2012
Posts: 499
Steve
I hope you have good luck with the Remicade. This disease does surely cause some life changes. I have learned the importance of pacing myself over the years. This year symptoms have become worse for me. Tomorrow I will try to cut the lawn for the first time this year. It will probably take me two days, but eventually it will get done(I hope).

Best Wishes


Age 61. AS dx'd at age 57
HLA-B27+,iritis/uveitis periodically since 1970, diabetic
Meds. naproxen and muscle relaxer(as needed)
Re: Switching to Remicade
SteveB #251880 05/08/13 11:56 AM
Joined: May 2008
Posts: 1,173
Registered Visitor
Offline
Registered Visitor
Joined: May 2008
Posts: 1,173
My rheumy does not do remicade at his office, so I get it done at a Cancer center office (Not a hospital).
from the time I get there till the time I leave its about 3 hours. I felt relief pretty much the next day. and it has worked wonders for me.



Carrie
Small business owner, 50 / mother of 5, Fort Worth, Texas
Remicade, Seroquel, Folic Acid, MTX, gabapentin
Undifferented spondylopathy HLA-B27+ (onset 2007- DXed 2008) with associated uveitis, psoriasis
EPI and IBS - gastritis due to NSAIDs
Right Hip replacement 2017 with subsequent 4" heterotopic ossification (removed 2019)
Re: Switching to Remicade
SteveB #251881 05/08/13 01:54 PM
Joined: Aug 2011
Posts: 796
T
Registered Visitor
Offline
Registered Visitor
T
Joined: Aug 2011
Posts: 796
My rheumy has an infusion center in his office. It is very comfortable, and I look forward to going there. I usually bring a drink and my iPad. I can feel the results of my infusion within a day or two. Remicade has worked well for me. I hope it works for you too!



41 y/o female, diagnosed RA 2009, sacroiliitis, peripheral arthritis, most major joints involved, HLA-B27- but suspect AS or spondylitis, Raynaud's, GERD, currently taking Orencia sub-Q, Mtx via injection, citalopram, omeprazole, tramadol, Cyclobenzaprine.


2012 - diagnosed with colitis and iritis and seronegative arthritis.

Failed - Enbrel (stopped working after 10 months), Humira (no effect) and Remicade (failed after two years).
Re: Switching to Remicade
SteveB #251883 05/08/13 02:04 PM
Joined: Feb 2013
Posts: 31
L
Registered Visitor
Offline
Registered Visitor
L
Joined: Feb 2013
Posts: 31
Hugs Steve.

I am so sorry that you are going through this. This stupid disease really stinks!

I started Remicade last month, I have only had my 2 start up doses so far. Right now I am a week and a 1/2 from my 3rd dose. I felt better the next day, I have had moments of almost feeling "normal". It actually made me realize how unnormal I have felt and how long it has been since I have felt this way.

My main symptom is Uveitis, so my Remicade is given to me at my occular immunolgists office. I go with a drink, my tablet and a snack. It is really no big deal, very relaxing, I get my eyes checked and my blood work done while I am there. I will take it over MTX injenctions any day!

I hope your insurance is approved quickly, mine took 3 months, and that Remicade will work for you.

Best,
Laura


Laura

HLA-B27+, iritis/uveitis since 1997, AS diagnosed in Jan 2013
Remicade, MTX, Celebrex, Folic Acid, Pred 5 mg every other day
Re: Switching to Remicade
SteveB #251907 05/08/13 07:24 PM
Joined: Jul 2012
Posts: 114
S
SteveB Offline OP
Registered Visitor
OP Offline
Registered Visitor
S
Joined: Jul 2012
Posts: 114
Thank you all for the encouragement, I feel Remicade will work for me since the doseage is by your weight. I don't mind getting I V put in so it should be a piece of cake, I will plan on bringing my IPad with me and something to drink. I have nothing but time these days anyway? I also have had several bouts with Iritis/Uveitis. My Rhumys office does the infusion, but I was thinking I would rather have it done at the hospital since my Rhumys office only has certain days/hours that I can do it. But I guess it's what the insurance will pay for so I may not have a choice anyway? Thanks again for the advise!


Dx'd April 2012 Psoriatic Arthritis/Osteoarthritis/Degenerative Disc Disease, my Rhumy said I have had this 10-15 years untreated. Have had Iritis in both eyes since 2007 it comes and goes. HLA-B27 negative. Meds currently taking are oxycodone for pain as needed, Remicade (starting when insurance approves) I also am a diabetic and now have high blood pressure. Failed Enbrel, Humira, Diclofenac, Methotrexate and Predisone. Wonderful wife Sarah, and father to 3 pugs!!
Re: Switching to Remicade
SteveB #252016 05/10/13 04:57 PM
Joined: Sep 2011
Posts: 42
S
Registered Visitor
Offline
Registered Visitor
S
Joined: Sep 2011
Posts: 42
Steve B,

Good luck. I started on Enbrel, but the uveitis would flair up, so I was switched to Humira, but that wore off. I just had my first infusion of Remicade on Monday. I also take 10 mg of prednisone per day to fight the fatigue. That will be tapered to 5 mg per day for a few days, then just the Remicade.

The prednisone has allowed me to get up and do things. I too hope that the Remicade works.

Re: Switching to Remicade
SteveB #252028 05/11/13 04:14 AM
Joined: Jul 2012
Posts: 114
S
SteveB Offline OP
Registered Visitor
OP Offline
Registered Visitor
S
Joined: Jul 2012
Posts: 114
Hey StLouis,
I just came through your city last week on my way home from Memphis, when I use to drive trucks I came through there everyday Mon-Thurs. disabled now, tried to go back driving but couldn't take the pounding, anyway, thanks for your comments, I'm just waiting for my insurance (BCBS of NJ) to approve it. Until then, I'm still on Enbrel? I used to referee the Blues training camps when they came to Colorado for high altitude training, but that was the good ol days! I cannot take Prednisone due to being a diabetic, makes my blood sugar go way high and out of control. I'm hoping for good results when I can get started on Remicade. Thanks for the post, keep in touch.


Dx'd April 2012 Psoriatic Arthritis/Osteoarthritis/Degenerative Disc Disease, my Rhumy said I have had this 10-15 years untreated. Have had Iritis in both eyes since 2007 it comes and goes. HLA-B27 negative. Meds currently taking are oxycodone for pain as needed, Remicade (starting when insurance approves) I also am a diabetic and now have high blood pressure. Failed Enbrel, Humira, Diclofenac, Methotrexate and Predisone. Wonderful wife Sarah, and father to 3 pugs!!

Moderated by  ElinAslanyan, RyanMiyamoto 

Link Copied to Clipboard
Powered by UBB.threads™ PHP Forum Software 7.7.4