why am I so apprehensive about Remicade????

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HM
Regular Member


Date Joined Sep 2008
Total Posts : 211
   Posted 1/6/2010 7:54 AM (GMT -7)   
I have cancelled two appts that are to get me started on the drug.  The doctor says he HAS to see me before he can ask the insurance to cover it. I am a nervous wreak, literally about this drug.  I have an appt. today at 2 and have already taken one xanax because I need to try to work for a few hours first.
 
I know I will go to the doctor and have to spend the whole time in the bathroom until he is ready to see me. 
 
Argh.....

37/f   proud single mom of 2

Diagnosed with GERD/Acid Reflex 2002

Diagnosed with IBS 2007

Diagnosed with Arthritis 2007

Diagnosed with UC, then Crohn’s 2007

Diagnosed with Generalized Anxiety Disorder 2008

 

Starting on REMICADE probably within the next mo.

Current medications: Asacol 2 tablets 3X daily, Imuran 50 mg daily,Endcort 3mg 3X daily, Pentasa 2 500mg caps 2X daily, Prilosec 20 mg 2X daily (if needed), .05 mg Zanax (if needed) Probiotics, Calcuim/Mag/Vit.D. Flinstones multi with Iron and Vit. C 500mg daily


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/6/2010 7:58 AM (GMT -7)   
Just think this could be the medication you need to get feeling better! Take a deep breath and all will be okay.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

HM
Regular Member


Date Joined Sep 2008
Total Posts : 211
   Posted 1/6/2010 8:34 AM (GMT -7)   
Thanks Gail! I am going to go today no matter what! I have called my dad to go with me and he will be like ...girl you are over thirty years old its silly to be nervous about the doctor, lol! I am hoping that is the kick in the butt I need. I guess I don't want to use the last resort, which this seems to be.

37/f   proud single mom of 2

Diagnosed with GERD/Acid Reflex 2002

Diagnosed with IBS 2007

Diagnosed with Arthritis 2007

Diagnosed with UC, then Crohn’s 2007

Diagnosed with Generalized Anxiety Disorder 2008

 

Starting on REMICADE probably within the next mo.

Current medications: Asacol 2 tablets 3X daily, Imuran 50 mg daily,Endcort 3mg 3X daily, Pentasa 2 500mg caps 2X daily, Prilosec 20 mg 2X daily (if needed), .05 mg Zanax (if needed) Probiotics, Calcuim/Mag/Vit.D. Flinstones multi with Iron and Vit. C 500mg daily


kia c.
Regular Member


Date Joined Jun 2004
Total Posts : 111
   Posted 1/6/2010 8:39 AM (GMT -7)   
I know what you're feeling.  I've been flaring since mid-September.  I've been to my doctor twice and each time he talks about adding Remicade or Humira.  I KNOW it's something that's looming on the horizon ... but I'm kicking and screaming about it.  For me, it's adding ONE MORE med to my regime of pills.  I've read the litature on Remicade, Humira, and Cimzia ... I don't want to take ANY of them ... but like Nanners writes, "it could be the medication you need to get feeling better!". 
 
Hang in there ...
 
kia
 

JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 1/6/2010 8:50 AM (GMT -7)   
Don't worry.  I was feeling very cautious before starting Remicade...but all is fine.  There was nothing to be worried or scared of.  Now I look foward to going so I can just sit back, read my book and catch some zzzz's.

36 yr old Male with Crohn's Disease since '88 - No Surgery yet
 
Been on almost every type of drug with bad results
Remicade since Nov 2009
Prilosec 20.6mg - 2x a day
Multivitamin daily


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 1/6/2010 9:21 AM (GMT -7)   
My husband's been on Remicade now for about 20 months, and he's doing great. Remicade pushed my husband into remission when nothing else did (not even 120 mgs of solumedrol). It has given us our lives back! Yes, it's scary, but most meds are. And really, because they know so much about it, they take good precautions with it - you have nurses watching over you, and they know what to do if you have an allergic reaction. It's ok to be scared about it, but also keep in mind that it could be just the thing to make you feel so much better! So, when you get anxious or start to panic, remember that flip side.

I hope it gives you good relief!

((Hugs))
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


Kimilio
New Member


Date Joined Dec 2009
Total Posts : 8
   Posted 1/6/2010 9:31 AM (GMT -7)   
I have been facing the same dilema, but not for myself.  I have a 10 year old son who was dx in 2007 with Crohns.  Dr wanted to start him right off with Remicade because his only symptom was the discovery of a fistula. Wouldn't be covered by insurance and quite honestly didn't want to use the stuff. Good thing was put off. He ended up in hospital weeks later because his system was to weak to fight off a herpes virus that caused sores from his mouth to his stomach and couldn't even swallow his own spit. Sent home on feeding tube for 8 weeks. Had he started the Remicade his situation would have been worse.  Started 6mp after that. After a year it wasn't working for him. Switched to Methotrexate which is still not doing the trick.  Still no symptoms physically, but all lab and clinical results are showing on going inflamation. Tried entecort and prednisone with out relief.  Now back to talks of Remicade.  At 10 years old, not to hip on trying "the last resort" drug.  And that stuff scares the crap out of me.  Oldest son has since been diagnosed with crohns also. Overwhelmed with all the contradicting info regarding diets.  Being told to try eliminate certain foods which ends up being the "safe" foods for some.  How are we to know what works for him when he displays no physical symptoms such as pain and diahrrea.  Fistula has since healed after a year on metronidizole and having a seton.

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 1/6/2010 9:32 AM (GMT -7)   
Frankly, I think it is perfectly natural and even sensible to be worried about starting Remicade. There "can" be some nasty side effects. Doesn't mean there will be, just that the potential is there. But when you consider your current quality of life and your options w/your Crohn's not responding well to your current meds ..... the "possible" risks of Remicade take on a slightly different flavor. As w/any med, you have to weigh the risks and benefits and then decide for yourself which way to go is worth it to you. Good luck and God bless! It can be a scarey decision but when you see and read of the blessings and benefits of 'cade for so many ...... it does look a bit more attractive.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 1/6/2010 10:06 AM (GMT -7)   
Hi, If you have had your appointment by now i hope it went well and your doc was able to give you peace of mind. Iwas only on remicade for 2 infusions as i had a reaction on the 2nd but i felt the benefit from it after the first one and soooo wish i could of stayed on it, when i had the reaction the nurses stopped it straight away had to stay there for a bit longer just for them to keep an eye but everything was fine. I would still try remicade again it hasn't put me off. wishing you all the best in whatever you decide to do and hope the doc.s get you feeling better real soon. Bev x wink
Diagnosed at 13 now 42
Reversal of temp stoma scheduled 27th Jan 10 :-)
Meds: Iron syrup,Loperimide,Folic acid & Citalopram 60mg (for Anxiety.)

Never be afraid to try something new;
remember amateurs built the ark, professionals built the Titanic.


Former58D
Regular Member


Date Joined May 2009
Total Posts : 173
   Posted 1/6/2010 10:39 AM (GMT -7)   
I can totally understand fears about Remicade. When I was first diagnosed I wanted to stay only on the 5-ASA meds, which worked reasonably well for around 18 months. AFter several months of flaring I was willing to try 6MP. After 4 months I got pretty bad and went with Remicade. I have completed the induction phase and I can say that this is the first time in 2 years that I have been just about asymptomatic. After seeing blood everyday for over two years I haven't seen blood in weeks. I have had no reactions to the Remicade. I honestly have my life back and do not regret anything except my own reluctance to take the drugs sooner.
"What can't be changed must be endured" - unknown

DX with distal Crohn's colitis Oct 2007, predominantly in rectum
Colozal (750mg): 3 pills 3xdaily
Cortifoam - 1 nightly
6MP - currently at 100mg and waiting for response......


HM
Regular Member


Date Joined Sep 2008
Total Posts : 211
   Posted 1/6/2010 2:55 PM (GMT -7)   
I cancelled again! I couldn't bring myself to go. I wish he would just order it since I was in the hospital in nov. He said that day that I hadn't felt good in 4 yrs...why wouldn't he just order it?

37/f   proud single mom of 2

Diagnosed with GERD/Acid Reflex 2002

Diagnosed with IBS 2007

Diagnosed with Arthritis 2007

Diagnosed with UC, then Crohn’s 2007

Diagnosed with Generalized Anxiety Disorder 2008

 

Starting on REMICADE probably within the next mo.

Current medications: Asacol 2 tablets 3X daily, Imuran 50 mg daily,Endcort 3mg 3X daily, Pentasa 2 500mg caps 2X daily, Prilosec 20 mg 2X daily (if needed), .05 mg Zanax (if needed) Probiotics, Calcuim/Mag/Vit.D. Flinstones multi with Iron and Vit. C 500mg daily


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 1/6/2010 6:33 PM (GMT -7)   
Because Remicade IS a drug that requires and begs for a good question and answer session w/your gastro and a thorough discussion of the risks and benefits so that YOU are the one to make the final decision whether to try it or not. Its not a decision your doctor can make for you. Its a decision only YOU can make after you've been fully informed and had a chance to think things thru. Your doctor is absolutely correct in insisting that you and he have a meeting of the minds on this.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 1/6/2010 7:23 PM (GMT -7)   
I never thought that I would be on Humira, and here I am. I worry a little about the side effects and if I will develop any, but I would rather feel better.
You can do it!!
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications:Humira,  Asacol, FolicAcid,  Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


HM
Regular Member


Date Joined Sep 2008
Total Posts : 211
   Posted 1/6/2010 8:47 PM (GMT -7)   
Crohnie...we did have a meeting of the minds a year ago and decided imuran first, then remicade if it didn't work. In addition we talked about it when I went into the hospital, as a matter of fact I thought he ordered it then. I feel like such a wimp,lol

37/f   proud single mom of 2

Diagnosed with GERD/Acid Reflex 2002

Diagnosed with IBS 2007

Diagnosed with Arthritis 2007

Diagnosed with UC, then Crohn’s 2007

Diagnosed with Generalized Anxiety Disorder 2008

 

Starting on REMICADE probably within the next mo.

Current medications: Asacol 2 tablets 3X daily, Imuran 50 mg daily,Endcort 3mg 3X daily, Pentasa 2 500mg caps 2X daily, Prilosec 20 mg 2X daily (if needed), .05 mg Zanax (if needed) Probiotics, Calcuim/Mag/Vit.D. Flinstones multi with Iron and Vit. C 500mg daily


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 1/7/2010 8:11 AM (GMT -7)   
I'm rather curious about why you are on such a low dose of Imuran. How much do you weigh? Has your blood work dictated the low dose? I'm not familiar w/the Asacol dosing but you certainly were NOT on the recommended Pentasa dosage which is 1 gram 4 x daily, whereas you were only on 1/2 the recommended dosage. How long have you been on the maximum recommended dose of Entocort?

I don't quite understand your reluctance to see your gastro and at least discuss Remicade again. You do NOT have to agree to Remicade just because you talk to him about it.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


HM
Regular Member


Date Joined Sep 2008
Total Posts : 211
   Posted 1/7/2010 10:55 PM (GMT -7)   
I thought when I was at the hospital when my stomach  looks preg and the pain was laborlike that we agreed to order the Remicade. I mean he even had them do the TB test while I was there.   I am apprehensive about going because I have to go in and sit for about an hour, then go into the office for another half hour before I see him.  I have to get up to go to the bathroom and it hurts to sit that long.....like I said I am a wimp!  The last time I went I told the nurse she was going to have to let me come back to lay back or I would need to head home.  She let me come back and sit in one of the rooms until it was my turn, but she was NOT happy about it, which makes me even more upset about going.  I really wish I had stayed in the hospital instead of coming home, however I have two kids and one that would not handle me being in the hospital well (he is autistic).
 
He did up my immuran to 100 mg a day while I was at the hospital.  I have been on 9 mg of endocort since the hospital visit the week before Thanksgiving.  I was on 6 mg before that and have been for the last two years (with a mo break here and there).  Also, I wonder if the immuran hasn't had time to fully kick in yet.  My GI acts like it isn't all that serious, saying that he and the radiology dr disagreed on how much thickening I have.  He didn't think it was as bad as the other dr did--I just thought that was because he is a GI dr and he sees it more.
 
Thank you for listening--this board has been a God send to me.

37/f   proud single mom of 2

Diagnosed with GERD/Acid Reflex 2002

Diagnosed with IBS 2007

Diagnosed with Arthritis 2007

Diagnosed with UC, then Crohn’s 2007

Diagnosed with Generalized Anxiety Disorder 2008

 

Starting on REMICADE probably within the next mo.

Current medications: Asacol 2 tablets 3X daily, Imuran 50 mg daily,Endcort 3mg 3X daily, Pentasa 2 500mg caps 2X daily, Prilosec 20 mg 2X daily (if needed), .05 mg Zanax (if needed) Probiotics, Calcuim/Mag/Vit.D. Flinstones multi with Iron and Vit. C 500mg daily


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2691
   Posted 1/7/2010 11:29 PM (GMT -7)   
I'm very reluctant about taking those kinds of medications. Lymphoma seems to run in my family. My Mom has it, and her Aunt had it. I believe another cousin somewhere had it. So something that would increase my risks for that obviously makes me very nervous. Not to mention I've heard of a lot of people here having terrible reactions and side effects. So, I think it's completely natural for you to be apprehensive about it. For me it would totally have to be a last resort, with the benefits outweighing that cancer risk for me.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06, and Health Anxiety/OCD 12/08 Taking Asacol, Questran, Toprol XL, and Celexa.


tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 1/8/2010 5:27 AM (GMT -7)   
HM, I am very impressed that you are willing to admit your fear and that is the first step in overcoming it. When I was first diagnosed with Crohn's disease back in 2004 I was very apprehensive to starting any medications also. I was actually in the process of being diagnosed when I required hospitalization for a GI bleed and was in severe pain. My doctors (GI and primary care) had been trying to diagnose my disease and were having a hard time because I was not your typical case. It was during this hospitalization that I was first put on the newly approved medication Remicade. I was sick the first night in the hospital due to all of the other medications in my body but the next day I saw a huge improvement and felt so much better. It was not 100% and it took a few infusions to get the full effect but I started living a somewhat normal life. I began to actually look forward to my remicade infusions every month because I could relax, talk to the nurses, and I knew that I was fighting my disease to the best of my ability. I was on Remicade for 4 years before I began to develop antibodies toward it and have tried Humira, methotrexate, 6 mp, and Cimzia since. I was on Cimzia for almost a whole year and did not receive even close to the relief that I did with Remicade and my arthritis was excruciating to say the least. Due to fact that I there were not any other big gun medications left and the prednisone had wreaked havoc on my teeth and bones, my GI decided that he would let me try Remicade again. I just had an infusion yesterday and after 4 infusions I am finally starting to see some improvements. I am now premedicated with cortisteroids and bendryl and sleep through the majority of the infusion. It is really nice to have a couple warm blankets, a coke ( I know bad but my guilty pleasure), and to chat with the nurses when I wake up. They have all become really good friends and I enjoy being able to interact with people outside of my family, close friends, and church. It also very humbling to be in the IV lab with all of the incredible people that are receiving their chemotherapy and fighting cancer. These individuals make me grateful for all I have and for my own situation of knowing that even though I am sick and miserable many days, I am still going to live and not in fear of dying soon. They have taught me to enjoy life and they motivate me to keep fighting. It is amazing how contagious their happines and optimism can be. I also noticed that you have a child with autism. I have a autistic nephew and know of the many challenges that mothers go through each day to help their child have a normal childhood. If you can do these things then you can handle the infusion.

pillpopper
Regular Member


Date Joined Jan 2009
Total Posts : 209
   Posted 1/8/2010 4:58 PM (GMT -7)   
Hey tsitodawg,I do the same thing,I go to my infusion to see the people,and along the
way I take a nap, and get some Remicade.
B-12injections,Pentasa,Loperamide,Entocort,6mp,Hydrochlorothiazide,8 week
Remicade,vitamin-D,Fluconazole.More over the counter vitamin-D. Remission since surgery and 5-years, of 8-week Remicade.
.


tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 1/8/2010 11:01 PM (GMT -7)   
I knew that I was not the only one that does that. It is a $10,000 conversation and I am going to get some rest and a free coke for it. Oh and the remicade too.

tamsprote96
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 1/9/2010 9:23 AM (GMT -7)   
I was on Humira for over 6 months and had little relief.  After getting a fistula on the Humira I went to the dr and wanted to change to Remicade.  Boy am I glad I did!  I felt improvement almost immediately and have had the first 3 iv's and finally feel normal again after a year of suffering and after losing 60 lbs.  On most days, I only have one bathroom trip, sometimes two (which is down from the 10+ times I was going before starting the Remicade).  I know it is scary, but if I knew a year ago what I know now, it would have saved me a year of suffering.  Good Luck!

lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 1/9/2010 12:16 PM (GMT -7)   
I was at the appointment with my GI to talk ostomies when he offered me remicade (was brand spanking new in the UK at the time) of course I leapt at the chance and I kid you not within about 3 days I was feeling fine and that one infusion kept me in remission for 2 years!! Was so worth it! I have it episodically (have one dose when symptoms return which can be between 6months - 3 years) I'm apprehensive to have it on the 8-12 week schedule favoured by a lot of doctors as the way I see it is if one dose works that well with me for that long it is mighty powerful stuff and I'm very much an "if it ain't broke don't fix it" person.
 
 


jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 1/9/2010 4:11 PM (GMT -7)   
don't worry about stuff you can't control
i was freaked out too but you get desensitized to it over time
Crohn's Colitis diagnosed 6/08
Organic SCD since 4/09
Remicade since 6/09
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D + zinc + Barlean's fish oil
Remission

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