My Fourth Abatacept Study Treatment and other stories

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Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 11/18/2007 7:18 PM (GMT -7)   
This is very long but I had to get this off my mind and vent.
 
The last month has been very bad for me. It started with a bad cold and I was off work for 2 days. It then developed into a sore throat that spread into my ear and I was off work sick again for 2 days a week later including on my birthday. November 1st was my 50th birthday, something I’m not happy about. My family doctor gave me a 10 day course of antibiotics for an ear infection. I couldn’t believe how painful it was. The only way I could tolerate it was with Tylenol 3’s but they only helped for 2 hours max at a time. To make things worse, a dental crown I had installed last spring on one of my front teeth broke off. I got in to see my dentist the following day and he was totally surprised to see what happened. He agreed to fix it at no cost to me. My dental insurance will only replace it after 5 years. He wanted to start work on it right away but because of my soar throat and ear infection I decided it wasn’t a good idea so I made another appointment 2 weeks later. Last Tuesday I went back and the dentist removed the broken crown, took an impression and installed a temporary crown. He sent the impression to the lab and the permanent crown should be ready in a week or two. Saturday the temporary crown broke while I was eating a sandwich, I just can’t win.
 
The antibiotics helped with my ear infection but a few days after I finished them it started to come back. On Wednesday I called my family doctor and the earliest I could see him was 2:00 pm that day. The problem was that I was having a flexible sigmoidoscopy for my Abatacept trial Thursday afternoon. I was planning to start my prep at 1:00 pm Wednesday. I was using Pico Salex and I need to take 2 glasses 6 to 8 hours apart starting 24 hours before the scope. Last time I took it the BMs started about one hour after the first glass so I decided to start it at 1:40 pm and rush to the doctor’s office before the effects would start, a risk I was willing to take because I wanted to stop the ear infection as soon as possible and I wouldn’t have time the next day. I got to the doctor at 1:55 and he was quite busy. I waited almost one hour before I saw him and the effects of the prep hadn’t started yet. He looked in my ear and said it wasn’t the same as the previous infection. He said my ear canal was scratched, bleeding and inflamed. I don’t know how that could have happen. Maybe I stuck my finger in there? He gave me a prescription for ear drops. I immediately went home and as I drove into my driveway I had the first urge to go from the prep. I barely made it to the washroom on time, 1 hour and 35 minutes after taking the prep.
 
My wife took the prescription for ear drops to the pharmacist and she was told the product was discontinued and they had to contact my doctor the next day. Meanwhile my ear pain is getting worse and I had no way of getting the ear drops until Friday. Thursday morning arrived and I was feeling like $hit. My ear ache was as bad as ever, I had a bad headache and my stomach was completely empty. All I wanted to do was get the scope over with and get something to eat. The scope was scheduled for 12:30 pm and I was to be at the hospital at 11:00 am.
 
I arrived on time and met with the study coordinator. I gave her a stool sample I obtain before the prep, a urine sample and she took some blood from me for testing. She gave me $20 for this visit and paid me for the prep. I then went to admitting and then to the endoscopic room. After filling out a few forms, changing and having my vital signs taken I ended up lying on a stretcher and ready to go at about 12 noon. Several nurses wanted to hook up an IV line for sedation but I insisted on no sedation because it was only a flexible sig. They were running a little late and wheeled me into the procedure room at about 1:00 pm. I really didn’t notice the wait because I fell asleep for most of it.
 
The nurse took my vitals and got me ready for the scope. Again she wanted to hook up an IV and give me a sedative which I refused. The study doctor came in and we had a talk about my symptoms for the last few weeks. I have been having 6 to 9 bloody, urgent BMs per day. I have noticed no improvement from the treatments at all. He performed a quick physical exam on me then did the scope. My colon looked just as much inflamed as the last scope. The doctor saw no improvement. He accidentally printed out some pictures of my colon. He said he normally stores them digitally and retrieves them from his office. I asked him if he ever gives his patients photos from the scope and he said no but because he has extras he could give me one. In all the dozen or more scopes I had, this is the first time I received a photo. My wife and friends at work were freaked out by it but it seems fine with me. I have seen a lot on the internet. You can really see the inflammation. If you would like to see it, go to:
 
 
I had my last scope 2 months ago just before my first Abatacept study treatment. I have had 3 treatments with my 4th one shortly after this scope. This will be the last treatment of the induction period and I will receive another scope in a month. Based on my next scope and symptoms at the time I will either enter the maintenance period if I show significant improvement or into the open label period if I show little or no improvement. I would then receive the real medication with no chance to receive the placebo. My first treatment of the next period will be just after my next scope on the same day. I asked the study doctor why I have to go through so many scopes and other test. I have to give blood, urine and stool samples at each visit. There are far more tests done than at my last study over a year ago. The doctor said that the FDA is getting much more strict with studies and wants to rely more on actual test results rather then symptoms. With all the scopes they want to see how fast inflammation changes if at all.
 
The study nurse came to the endoscopic room just as I was ready to leave to tell me to meet her in the infusion room in 15 minutes. She suggested I get something to eat and bring it to the infusion room. I finally left the endoscopic room at 1:30 pm and I was starved. I got a Subway sandwich and drink and brought it to the infusion room. The study nurse was nowhere in sight so I sat in the hallway and ate my lunch. She finally showed up at 2:00 pm. The infusion room was full, mostly Remicade patients, so I sat in the hallway and received my treatment right there. The nurse took my vitals and hooked up an IV line. She then left to pickup the medication. It is mixed in the hospital pharmacy and the study nurses and doctor don’t know if I am getting the placebo or not. She came back at about 2:20 pm and started the treatment immediately. The infusion only took a half hour. After measuring my vitals I left shortly after 3:00 pm.
 
I went into work Friday, the next day and my ear ache was getting worse. I almost considered leaving early because of it but I stuck it out. I finally picked up the prescription for antibiotic/steroid ear drops just after work. I started using it that night. I was scheduled to work overtime Saturday but my ear was still very sore and I woke up at 2:00 am with severe ear pain. I took another Tylenol 3 and went back to bed. I didn’t go in for overtime in the morning. Saturday afternoon I started to feel a little better then suddenly my 5 year old daughter was complaining about an ear ache. She was crying. She had a cold and did not go to school for a few days. It now turned into an ear infection. Knowing exactly how she felt my wife and I took her to a 7 day walk-in clinic at 4:00 pm. Our family doctor is not available on weekends. Unfortunately it had just closed. We went back home and I searched on the internet for another clinic that may be open. I found an after hours clinic at a local hospital that was open weekends till 9:30 pm. We got there at 5:30 pm and had to wait till almost 7:00 pm to see a doctor. Sure enough it was an ear infection and the doctor prescribed oral antibiotics for my daughter. We picked it up at the hospital pharmacy and started them shortly after we got home. The clinic doctor told us to take our daughter to see our family doctor in 4 or 5 days. I already have a follow up appointment for my ear infection on Wednesday so I will call his office Monday morning and see if I can get my daughter in at the same time.
 
Are these bad things ever going to stop? The next month has to be better.
 
Take care,

Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Allergic reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Currently in Abatacept trial - waiting for remision
 


DeniseW
Regular Member


Date Joined Nov 2005
Total Posts : 346
   Posted 11/18/2007 8:49 PM (GMT -7)   
Oh Paul, I'm so sorry! I know how things roll like that and it's horrible! Mine just ended about the end of Oct (knock on wood) and it started June 1st!!! I pray yours ends this week. And I hope that the real abatacept drug works for you. 6 weeks from now you could be a new person!
dx 4/05 with pancolitis UC after birth of my second child...
18 months of vit e enema and scd remission
Flare since 7/07...almost to surgery, now almost well through mostly natural stuff
Trying to make up the difference with...
Lialda 4/day... I don't know, 3 months maybe?
Remicade 10/26, 11/09, next 12/3
Imuran 50mg at night 11/11
 
Been there, tried that....
 


Scrap Girl
Veteran Member


Date Joined Jan 2007
Total Posts : 653
   Posted 11/18/2007 9:01 PM (GMT -7)   
Thanks for keeping us posted. Hope things improve soon.
Diagnosed with UC in Feb. 2005
 
Colazal (9 a day)
Folic Acid
Biotin
Calcium
Remicade remission


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4034
   Posted 11/18/2007 10:01 PM (GMT -7)   
Paul,

I'm sorry you're having to go through all these other sicknesses on top of the UC. I had a nasty ear infection last spring and it hurt like hell, so I can relate (kind of, at least). I feel like I've constantly been getting infections this year and it sucks and is scary at times. I'm glad you made it out of the doc's office just in time for your prep to kick in! I would have been getting really anxious and nervous if I took the prep before going to the doctor. I hope your daughter and your ears get better soon and I hope all goes well with replacing your crown, too.
23 years old
Diagnosed with UC March 2007
Current inflamation in the rectum
Asacol 4 tablets 3x/day
Rowasa (generic) - as needed for flares
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; Metamucil; Viactiv (Calcium and Vit. D) for Osteopenia; flaxseed


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 11/18/2007 10:08 PM (GMT -7)   
Wow, Paul, I'm sorry to hear you're having such a tough week! The last ear infection I had was about 15 years ago, before I was diagnosed with UC but when I still smoked. I went through five different antibiotics before Cipro finally got rid of it for me.

I'm glad you got pictures! My doctor always gives me a copy of the report which has the pictures printed on it for my files. I can study the progression of my disease. The first one is cherry red, with all kinds of ulcerations. The second has so much mucous I can only see small patches of the intestinal wall. Finally, my most recent one looks like normal shiny pink tissue. Yours looks about like my second one.

Hope you soon feel better, and that the new med helps you.
Judy
 
Moderate to severe left-sided UC diagnosed 2001.
 
Current meds are Colazal, Azathioprine and Remicade. Completely off steroids for more than a year now! In remission since April, 2006. Remicade has been my wonder drug.
 
Now tapering Azathioprine, please pray for me.
 
"If you spend your time second-guessing your past decisions, you'll never have time to enjoy today."


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 11/18/2007 10:12 PM (GMT -7)   
I forgot to add that my doctor's practice group is also participating in the abatacept trial. There were a couple of guys getting it when I was in last week for my Remicade. I was a little envious that it infused so quickly. The Remicade takes about 2 1/2 hours, but I guess at least it works for me.
Judy
 
Moderate to severe left-sided UC diagnosed 2001.
 
Current meds are Colazal, Azathioprine and Remicade. Completely off steroids for more than a year now! In remission since April, 2006. Remicade has been my wonder drug.
 
Now tapering Azathioprine, please pray for me.
 
"If you spend your time second-guessing your past decisions, you'll never have time to enjoy today."


quincy
Elite Member


Date Joined May 2003
Total Posts : 29860
   Posted 11/19/2007 2:10 AM (GMT -7)   
Paul...poor you for having to go through such a hell week! I had an ear infection when I was about 6...I can STILL remember the pain!!!!

Your colon does look quite nasty...as goofy as this sounds, I hope you're getting the placebo.

I agree...the next month has got to be better!

Thank you for keeping us updated.

Feel-better wishes bsent your way!

quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 11/19/2007 9:00 AM (GMT -7)   
Thanks everyone. Last night I got a good nights sleep. It was the first time in about a month that I did not wake up overnight because of an ear infection pain or to go to the washroom. Hopefully things are getting better.
Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Allergic reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Currently in Abatacept trial - waiting for remision
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 29860
   Posted 11/19/2007 11:48 AM (GMT -7)   
Ah...zzzzzzzz smurf   
q


*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 11/19/2007 12:12 PM (GMT -7)   
Oh no! I am so sorry you are going through so much. My 2 year old got ear tubes in April b/c he had so many ear infections. I have only had 2 but boy I know they hurt. And on top of everything else! You hang in there! Keep us posted. I enjoy reading your posts.
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-6 a day, Acidopholis Pearls, Prilosec OTC

http://www.healingwell.com/donate
Co-Moderator UC Forum


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 11/19/2007 2:42 PM (GMT -7)   
Holy cow, Paul -- you've been through the wringer. I'm glad you are starting to feel a bit better in regard to the ear infection and good to hear you got some rest. Hope the little one is feeling better soon too.

Carol

Remicade - will have my 19th infusion on December 27.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 11/19/2007 8:39 PM (GMT -7)   
Thanks Tabitha and Carol,

Other then in my childhood I don’t remember ever having an ear infection before. Even when I search for information about ear infections I have to include the word adult or I only get info about children.

This is only the second time my daughter has had an ear infection. The antibiotic she is taking is a banana flavored liquid that is given into her mouth with a syringe. The first 2 times we gave it to her she fought against it. I had to hold her down while my wife gave it to her. The first time she actually spit it out. Now it is much easier to give it to her. She actually cooperates and even gets it from the fridge when it is time. I think she finally realizes that it does help. She stayed home sick 3 days last week and went to school today. She is feeling much better.
Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Allergic reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Currently in Abatacept trial - waiting for remision
 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 11/19/2007 9:04 PM (GMT -7)   
Aww, poor little peanut. Glad that she is taking the medicine like a big girl....and tell her I said so. She should be very proud of herself! Glad to hear she is feeling better...now to keep Mom from getting it!

Carol

Remicade - will have my 19th infusion on December 27.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 

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