How do you get over the fear of side effects?

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glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 10/15/2008 4:43 PM (GMT -6)   
I had a nurse call me 4 times today to try to convince me to start Humira.  I did an earlier post about my labwork, apparently my sed. rate is 120 and all of my other numbers are horrible too.  The problem is that I feel perfectly fine, besides a little bleeding and a few BM's a day...I feel normal!  I'm scared to death of the cancer risk or Humira and the possibility of getting an infection and dying.  I get UTI's a lot so that worries me too if I'm on Humira.  This nurse today would not leave me alone, what is the deal?  Anyway, how do you all that are on Remicade or Humira justify the possibility of serious side effects? 
 
I'm scared to death to try it but the chance that I might get into full remission is very tempting!  By full remission, I mean not having to run to the bathroom first thing in the morning, maybe I can even go to my family cottage and share a bathroom with 6 other people without worrying about not having the bathroom free when I need it.  Does that ever even happen or will that first morning BM always be urgent?
Female, Age 37
 
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03
Diagnosed with UC 2/03
_____________________________________________________________
Current Meds:
75mg 6-MP
Entocort
Cortenema as needed
Ferrex Forte
Acidophillus
Sacchromyces Boulardii 


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 10/15/2008 6:59 PM (GMT -6)   
Anyone?
Female, Age 37
 
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03
Diagnosed with UC 2/03
_____________________________________________________________
Current Meds:
75mg 6-MP
Entocort
Cortenema as needed
Ferrex Forte
Acidophillus
Sacchromyces Boulardii 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 10/15/2008 6:59 PM (GMT -6)   
Well, my way of dealing with fears is to expect the worst that way you're prepared and if it's not that bad then it'll be a nice surprise.

Plus if it puts you in remission that's the icing on the cake and the goal anyways.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


mh53mike
Regular Member


Date Joined Aug 2008
Total Posts : 149
   Posted 10/15/2008 7:13 PM (GMT -6)   
I was at a point where i was comtiplating surgery...no thats scary to me, maybe as scary as starting the new treatment for you. Anyways at the time that made me think one thing..."Have I done everything in my power to help myself" ie diet changes and such.

My suggestion to you is if you fear the "possible" side effects scare you so much that you dont want to take the drug and dont feel to horribly bad ask yourself that question. You will find that when your other option is something you dont want you will be very honest with yourself.
26y old male medically disharged USAF veteran.Diagnosed with UC (lower proctitis) in 2004.
 
Current daily treatment:                               Probiotics & supplements:
2400mg oral asacol                                      Digestive enzymes
5mg prednisone tapering                               50 Billion CFU's acidopholis&Bifidobacterium daily
75mg azathioprine                                        folic acid & calcuim with V-D
20mg Nexum                                               VSL#3 450billion bacteria packets
 
Diet:Little/no sugars, fats, carbs, caffine,yeast,breads. Stay natural as possible.  
 
Results:1 Bowel movement in the morning no blood! Remission since 08Sept08


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 10/15/2008 7:26 PM (GMT -6)   
well i fear the disease more as of this point as i have been extremely, extremely sick several times with it. i definatly HATE prednisone, but I HAAAAAAAAAATEEEEEEEEEEEEE colitis much more. I am also not fond of 6mp or any of the immunosupressors as they have a universal role on your immune system functions which can't be good in the long term. Surgery is scary no matter what, but its most likely an end point and then you will at least KNOW what you have to deal with forever, versus not knowing when a flare might happen versus what side effects might pop up from medications.

The way I personally rate it is... there is really bad(colitis flare), somewhat less bad(prednisone), and not quite as bad(6mp), and the invest now, pay later(surgery). So I chose the not quite as bad! (6mp). so far so good. no sides thus far. Anything is a risk really, its up to what you are willing to live with. I personally would choose surgery before going on humira or remicade.
UC since age 22, now 27.  Several huge flares since then.
 
Currently tapering prednisone(35 mg from 80 mg).  Also just starting 6mp again and lialda.   I definately am not liking these drugs.  Maybe surgery one day?


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 10/15/2008 8:11 PM (GMT -6)   
For me, when my quality of life becomes so low that I start wondering why I couldn't get a disease that kills me instead of just making me wish I was dead....then I'm ready for a new risk.

When I'm currently in the bathroom 20-30 times a day, bleeding heavily, in pain and have so little energy I find it hard to pick my foot up to take the next step, it becomes easier to contemplate the tiny risk of cancer sometime in the future.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 10/15/2008 8:24 PM (GMT -6)   
Thanks for the replies. I think what I'm wondering and not getting an answer to is why would someone take Humira if they feel great, are only having 2-3 BM's day with a little blood? I just don't feel like I'm sick, but my labs indicate otherwise. I can't see taking a drug that can kill me when I feel fine. Also, all of the info. says not to take it if you get frequent bladder infections which I get. When I mentioned this to the nurse she blew it off and told me that I need to get with my OB/GYN to figure out how to prevent them. DUH! I've already done that but I still get them all the time!
Female, Age 37
 
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03
Diagnosed with UC 2/03
_____________________________________________________________
Current Meds:
75mg 6-MP
Entocort
Cortenema as needed
Ferrex Forte
Acidophillus
Sacchromyces Boulardii 


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 10/15/2008 8:31 PM (GMT -6)   
For me........ I was scared to go onto Humira. I had a horrible reaction to Remicade, and I was scared of having the same reactions with this medicine. Before my first dosage, my husband had me buy benedryl and some stuff that was given to me when I was taking Remicade. He had me schedule my "teaching time" on a day that he would be home. So, I went to my doctors and a nurse taught me, and I gave myself the medicine, and went home. No reaction. I've been on it for a while and still no problem. I work in child care and I still don't have any real infection. I do talk to my doctor when I get a bug from the kids and the bug keeps hanging on. I mention to the doctor about my medication, and he immediately gives me antibiotics that won't effect my UC medicine. I guess, I'd say just take a leap. Trust God. This medicine is a life saver for me.
26 year old, Married, Female.
Diagnosed with UC since March 2007
Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)


mh53mike
Regular Member


Date Joined Aug 2008
Total Posts : 149
   Posted 10/15/2008 8:39 PM (GMT -6)   
Dont go on it then it is YOUR choice. HAve you looked into Candida or bacterial/yeast overgrowth treatment? Thats not to far out of the realm of UC. It maybe causeing your UTI and some UC symptoms.
26y old male medically disharged USAF veteran.Diagnosed with UC (lower proctitis) in 2004.
 
Current daily treatment:                               Probiotics & supplements:
2400mg oral asacol                                      Digestive enzymes
5mg prednisone tapering                               50 Billion CFU's acidopholis&Bifidobacterium daily
75mg azathioprine                                        folic acid & calcuim with V-D
20mg Nexum                                               VSL#3 450billion bacteria packets
 
Diet:Little/no sugars, fats, carbs, caffine,yeast,breads. Stay natural as possible.  
 
Results:1 Bowel movement in the morning no blood! Remission since 08Sept08


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 10/15/2008 11:26 PM (GMT -6)   
I wouldn't start a new medication if my symptoms were controlled well enough to satisfy me. We all have different ideas of what we'll tolerate; if I'm feeling well, I consider that I'm being adequately treated for now.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 10/15/2008 11:36 PM (GMT -6)   
If you're feeling that well and you find it tolerable then why would Humira even be an option at this point? It's confusing to me that your doc would suggest it with only have a minimal amount of blood and 2-3 daily bm's.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 10/16/2008 5:37 AM (GMT -6)   

You are your best advocate. It is important for you to know your body best, learn as much about UC as possible, and the possible treatments and side effects.

When my daughter was first diagnosed and we learned all about UC and treatments, we swore she would never go on the more powerful drugs (6-mp, imuran, remicade, humira). Over 1-1/2 years she was either in remission or a full-blown flare. Each time another drug stopped working and prednisone was the only thing to get her into remission, we had to look at the next drug. By the middle of of her 2nd flare her doctor, who is very conservative with drugs, really thought 6-mp was the next drug to try. After being in an intense flare for almost 2 months, any drug was starting to look good if it helped her. It made it easier to accept a more powerful drug because we trust her GI and he started her out on the lowest dose he felt would work and tested her blood often. Unfortunately she flared again and remicade was tried. At the same time we decided to speak to a surgeon just to learn more. By then, Remicade wasn't helping and the flares were becoming more frequent and harder to get out of. She never wanted to start Humira.

She had her surgery while in remission. The best time to have it but also the most difficult time to make that decision. Why remove something that is finally working well again?!

One of the reasons she chose surgery was because of the damaging side effects the drugs could have. She is only 17. She would possibly be on these medications for another 50-70+ years. That was a big fear. For her, more than surgery. She hasn't regretted surgery.

It concerns me that the nurse is so pushy about you starting humira. I agree with others that maybe you should get another opinion. The final decision is still yours. You can say no to any treatment offered. It sounds like you need a doctor (and his office) who is more on the same page as you (move to the next drug if and only if you aren't responding to the drug you are currently on).


--Mom of bratcat (17 years old) and nonamejames (19 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds
Step 2 scheduled for November 10
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 10/16/2008 8:16 PM (GMT -6)   
The reason they are pushing it is because according to my labs, there is major inflammation in my colon (according to the high sedimentation rate). They don't believe that I'm doing well when my labs say I'm not.

I've been thinking about getting a new doctor. This is my 4th doctor in 5 years though. I've had 2 at U of M and 1 at the Cleveland Clinic. Why is it so hard to find a doctor that cares?

mhmike53-Care to explain what you're talking about? lol I'm not sure I understand.
Female, Age 37
 
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03
Diagnosed with UC 2/03
_____________________________________________________________
Current Meds:
75mg 6-MP
Entocort
Cortenema as needed
Ferrex Forte
Acidophillus
Sacchromyces Boulardii 


Luna0
Regular Member


Date Joined Jul 2008
Total Posts : 83
   Posted 10/16/2008 10:06 PM (GMT -6)   

I am on remicade and i don't have that many problems. I would rather have the meds before the surgery. Except prednisone, have you seen some of the side effects? I am still working on my side effect problems. Now i am dealing with the scary thought of having some pituitary problems. It might be perminant... smhair smhair smhair

But i face the fact i might have to have surgery, someday. I just don't want to do it till i need to.


Tawn 
18 years old, College Student ~WAHOO GO CATS=)
 
Diagnosed in 2004
Currently on:
Remicade
Imuran 3pills/day
And many other over the counter meds.


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 10/17/2008 7:00 AM (GMT -6)   
I tell myself well that wont happen to me............well it did. I got kidney disease from taking sulfasalzine I have been battling it over a year and take prednisone for it, I got every side effect from pred. A friend of mine at work found out she had cancer the same time as I found out about my kidney disease and two months later she was fine and has been fine ever since, but not me.

Sulfasalazine is one of the 'safer' drugs. So now I tell myself you never know, and you really have to weigh all the options. I figure I already got kidney disease, so now the other stuff wont happen..........yeah I know it's not smart but it's how I look at it.

However, I am not good at playing the odds, I always seem to lose.
Beth, 33 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07.  Flare May 08 (from aspirin?).
UC dx'd 03/00 Proctosigmoiditis; Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07. Close to remission since 9/08.
Prednisone 5mg/2.5mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


mh53mike
Regular Member


Date Joined Aug 2008
Total Posts : 149
   Posted 10/17/2008 5:47 PM (GMT -6)   
You have never read up on Candidia or bacterial overgrowth? You are taking acidophilus so i assume you know some stuff about this bacteria and the damage they can cause. Best thing to do is read up on Candidia and bacterial overgrowth. There is a vast amount of info out there, and you may have a light bulb or two go off while reading up on it. I know i did.
26y old male medically disharged USAF veteran.Diagnosed with UC (lower proctitis) in 2004.
 
Current daily treatment:                               Probiotics & supplements:
2400mg oral asacol                                      Digestive enzymes
5mg prednisone tapering                               50 Billion CFU's acidopholis&Bifidobacterium daily
75mg azathioprine                                        folic acid & calcuim with V-D
20mg Prilosec                                          VSL#3 450billion bacteria packets
 
Diet:Little/no sugars, fats, carbs, caffine,yeast,breads,alcohol. Stay natural as possible.  
 
Results:1 Bowel movement in the morning no blood! Remission since 08Sept08


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 10/18/2008 5:35 PM (GMT -6)   
I think that nurse sounds too pushy, and I think you should get a second opinion, too.
What she is suggesting doesn't make sense to me.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete probiotic first, now Forte pills. 
Achieved remission for the first time in many, many years!? Seemed so, but colonoscopy Oct. 6 proved not so, heavy inflammation in ascending colon & will be using Rowasa again. But I AM better.
 
 


neednewbody
Regular Member


Date Joined Sep 2008
Total Posts : 59
   Posted 10/18/2008 9:13 PM (GMT -6)   
I loved Remicade until it stopped working. I never had any side effects. not one! nothing!
I am looking forward to Humira. It will help me, it has to! but, I am not scared.
Your doctors weigh the risks and benefits. The risks are usualy less than 1% of people and the benefit is usually about 80% chance you will get better.

as for not feeling bad but having bad lab values. I had a liver disease for 20 yrs with no symptoms,but terrible lab values. When the lab values totally tanked, I had a transplant which was expected from the start. I worked the day I was called in to surgery - that is how well I still felt that day. I recovered in less than 2 months from surgery. My new liver was great within weeks. If I had waited til I was dying (as some of the people in the hospital had to) my recovery may have been slower or not at all. the people who were rushed to the hospital almost dead did much slower and were still in the hospital when I left.

also, just because you have no symptoms doesnt mean anything. high blood pressure = no symptoms until heart attack. high cholesterol = no symptoms until stroke -- osteoporosis = no symptoms until break your hip
Liver transplant 2004 -- liver is only healthy part of me
Prograf 1mg bid for transplant
 
Remicade every 6 weeks - not working
pentasa 1500mg tid
palafer once daily
lomotil every day as needed
immodium every day as needed
 

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