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sweetnakira
Regular Member


Date Joined Apr 2010
Total Posts : 119
   Posted 5/10/2010 6:08 PM (GMT -7)   
Hello everyone,
I know I have a very bad habit of leaving very long post just to get to my question so I will try and make sure this is short so I get enough answers before I go see my new GI doctor tomorrow. I just had a 5 day stay at the hospital and a seton drain was put in which means I have a rectal fistula cry . While in the hospital they tested me for TB and it was negative so I heard that they want to start me on remicaid right away. I've had inflamation in the same spot for about 3 years now and the only meds I've been on for crohns has been asacol. My symptoms have been a lot of weight loss, constant diarreah (havent had formed stool in over 2 years),  and fatigue....oh and had a rectal abcess and now a fistula cry .
 
Ok, so I will be seeing the doctor in the hospital clinic for the first time tomorrow and I am to scared to start remicaide righ now. I am very sensitive to medications and that seems like a strong one and I want to try others first before I go down that road. Well, I was going to ask the doctor if I can start pred. (steroid) and 6mp. I figured I could start the steroid so the inflamation can go down fast and I can stop running to the bathroom until the 6 mp starts to work (if it works for me). Can anyone who takes these meds please tell me what I can expect as far as side effects and could 6mp heal a fistula? Thank you in advance for any answers. I am so nervous about tomorrow and starting medication...............sighhhhh

KEL1318
Regular Member


Date Joined Mar 2010
Total Posts : 23
   Posted 5/10/2010 6:40 PM (GMT -7)   
I am currently on both...60mg steroid taper and 75mg of 6MP. I know that the 6MP is not working yet, because I ended up back in the hospital last weekend with an abscess.
The steroids definitely help with the inflammation and the pain. As for the 6MP, when I was on it in 2007-08, I felt great. I could eat whatever I wanted (even salad!!!) and I was fine.

The side effects of the 6MP were ok...I was often tired (could have just been the crohn's though) and my liver tests have always come back normal. Just remember that the 6MP can take months to work. I have no idea about the remicaid, but I guess if you are looking for quick results ask for the steroids.

Is there a reason you want to try the 6MP over the remicaid? Again, I know nothing about it.

Good Luck!
Dx: Crohn's in 2007 (after 10 yrs of symptoms)
Laporoscopy 10/07, Pentasa, Entocort, Prednisone (not working)
6mp - Nov/07-Nov/08 (worked great, but went off the meds in hopes of conceiving-no luck)
Remission until 2/10...Major Flare 3/10
Meds:Prednisone taper and back on the 6mp, Vit.D, Culturelle, Folic Acid, Pre-Natal Vitamin


specialknbug
New Member


Date Joined May 2010
Total Posts : 11
   Posted 5/10/2010 6:59 PM (GMT -7)   
I've been on remicade now for about three years. My infusions are every 8 weeks. Been in remission for over almost txo years now. The only side effect I have had is weight gain-quite a bit actually, but I don't believe that's every case. I can eat healthy foods finally.
I used to be in the hospital once or twice a month with an obstruction, so remicade has given me my life back. It is a big decision, because of the long term effect, so I wish you luck!

orngie
Regular Member


Date Joined Feb 2009
Total Posts : 161
   Posted 5/10/2010 7:42 PM (GMT -7)   
The drawback in your case may be that it can take 4-6 months to know if 6mp is working and it sounds like your Crohn's is active enough for that to be a problem. I'm not sure how well it would help with the abscess/fistula healing.

I was on 6mp for about 2 weeks and developed a pretty bad reaction to it, so switched to remicade with very good results.

Good luck with whatever you and your doctor decide to try.

sweetnakira
Regular Member


Date Joined Apr 2010
Total Posts : 119
   Posted 5/11/2010 7:06 AM (GMT -7)   
Thank you to everyone that replied. I am getting ready to go see the GI doctor and I am having such bad anxiety :-(. Unfortunatly, I suffer from very bad anxiety and panic attacks too. I was having such bad anxiety last night about seeing the doctor that I didn't really get any sleep. Thats another thing that I am worried about, if any of these medications will make the anxiety/panic attacks worse :-(. I'm not having a good day today, it's more like "why is this happening to me" type of day and I want to cry. It does make me feel good to see that a couple of people have had remicaid and they are doing good with no scary side effects (I don't think). I figured the 6mp would take months to see if it will work for me and thats why I was thinking about asking about the steroid for a fast result while the 6mp kicked in. I'm not to sure how long it takes before recicaid infusions can start but from what I have read it's not something that can start right away. Im also worried because the fistula is draining and I don't know if the stuff draining means that it's infection and I believe with steroid and remi that you can't start while you have an infection. I'm getting myself so nervous that I feel like I am going to throw up :-(. I thank God that I found this forum because I am definatly learning a lot and everyone seems very friendly. Well, I have to be at the GI clinic by 12:00 so I am going to start getting myself ready. I will give an update if anyone is curious about what the doctor is going to make me do (I feel like they don't listen to me and tell me that I have no other choice). Sighhhh........I am really scared

cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 5/11/2010 9:55 AM (GMT -7)   
Ask your GI about an anti-anxiety med while you're there - there's no reason to be going through this kind of emotional upheaval.

KEL1318
Regular Member


Date Joined Mar 2010
Total Posts : 23
   Posted 5/11/2010 10:15 AM (GMT -7)   
Good Luck.  Please keep us updated!  :)

Dx: Crohn's in 2007 (after 10 yrs of symptoms)
Laporoscopy 10/07, Pentasa, Entocort, Prednisone (not working)
6mp - Nov/07-Nov/08 (worked great, but went off the meds in hopes of conceiving-no luck)
Remission until 2/10...Major Flare 3/10
Meds:Prednisone taper and back on the 6mp, Vit.D, Culturelle, Folic Acid, Pre-Natal Vitamin


sweetnakira
Regular Member


Date Joined Apr 2010
Total Posts : 119
   Posted 5/12/2010 8:56 AM (GMT -7)   
**UPDATE**
Hello Everyone, Well I went to the GI clinic yesterday and they feel I have been very under treated the last couple of years. They are very confused about the low grade temps since the colonocopy last month. They seem to be on the same page as me as far as starting steroids and 6mp (and I didn't even bring it up) but I have to take two antibiotics this week because of the low grade temp because they said they need to make sure an abscess is not starting or anything else because you can't have infection when starting steroids. They gave me a script for 2 different antibiotics and I go back next tuesday so we can start treating this crohn's. The doctor told me to take as much imodium as I need to. I was confused because some doctors say it's not a good idea but this doctor seemed to want me to take it as much as I needed being that everyday I am running to the bathroom when I eat. They wouldn't even let me take imodium while I had my stay in the hospital. The doctor did say it could take up to 4 months for the 6mp to start working or find out if it is working so I am assuming that is why the steroids. Also, they aren't sure about them closing the fistula. My other problem now (that I forgot to mention) is that I think I have an infection in my tooth. It first started with tooth pain and now the gum is swollen so I hope I am not getting an infection there :-(. I am also having some problems from being on so much antibiotics since the colonoscopy, I have developed thrush in my mouth and a yeast infection :-(. Now I have to start cephalexin 500 mg. 3 times a day and flagyl twice a day today so they can try to start me on the steroid and 6mp next week. I don't know how much more my body can handle all these antibiotics. My mouth hurts so bad that I can barely eat. They did give me medication for that but now that I will be taking more antibiotics I don't know if it will clear up. I have never taken cephalexin before and am nervous but because I am allergic to Cipro I guess I have no other choice. I actually didn't run a temp last night (the fevers seem to only come in the late evening and through the night). I was thinking that maybe I started running a fever after the colonoscopy is because I do have the inflamation in the ilieum and when she did the procedure and biopsy it aggravated it, I don't know and the doctors don't seem to understand either.

Well, I am really curious to know how people have felt on these medications now (steroid and 6mp). Like I mentioned, I do suffer from daily anxiety and really bad panic attack at times that will last for hours. I take 1 mg. of xanax 3 times a day for that. Are the steroids going to make them worse then they already are? When being on steroid will I feel anxious and have problems sleeping at night (cuz that WILL make me have panic attacks). Is there anything I should expect from the 6mp? As far as weight gain with any medication I am not concerned about that at all because I have lost so much weight that thats another thing that concerns them. I went from 156 and yesterday I was 106 :-(. Any information anyone can give me about how you felt when stating these medications, as far as side effects, would be greatly appreciated. Thank you to all of you who have responded to my post and I hope I can get some more information because I am so anxious.

cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 5/12/2010 12:57 PM (GMT -7)   
sweet, why don't you just wait and see how you feel on the prednisone? It doesn't do you any good to assume you going to feel worse on it because someone else did. Prednisone is a great drug and should reduce your crohns symptoms in DAYS not months so concentrate on that happy fact instead of what else might happen. I was on 6mp for almost ten years with great results and no side affects. It's a good drug. Just don't miss a single blood test - it's very important.

sweetnakira
Regular Member


Date Joined Apr 2010
Total Posts : 119
   Posted 5/12/2010 1:54 PM (GMT -7)   
Cleo35, thank you for the reply. I'm glad to hear about the 6mp working for you and I pray it works for me with no problems. I want to also thank you for telling me about keeping up with blood test because they didn't mention that but I guess it's because I haven't started yet. My reason for the panic about the steroid is I have heard it causes very bad anxiety and I already suffer from anxiety /panic attacks and couldn't take them getting worse. They were so bad at one point that I couldn't leave the house and it is a horrible feeling. Maybe God will Bless me and I will get no anxious feeling at all from the steroid (could that be possible). One good thing that you mentioned is it does work fast from what I heard and it would be great not to have to run to the bathroom all the time and finally be able to get out of the house without worrying if I will be able to get to the bathroom.

If anyone can tell me their experience with these meds (good or bad) I would appreciate it. Has anyone had a fistula heal from 6mp? Can a fistula heal on its on once the crohns is under control?
37 year old female and a proud mother of 8 kids (5 still living at home) and a very supportive Husband
Found out I had crohn's disease about 3 years ago
I haven't had proper treatment since :-(
Have had rectal abscess and now a rectal fistula
Medications I have taken for crohn's is..... Asacol and Entocort EC
Currently taken....Asacol
Suppose to start Steroid and 6mp next week (May 18, 2010).....I'm so scared :-(
Seton drain was put in on May 4, 2010
I also suffer from very bad anxiety and panic attacks for over 10 years (after my father passed away)
I have tried almost every medication for it but nothing worked or I had a bad side effect so for the last 6 years have been on xanax 1mg., 3x's a day
I started having joint pain about 7 months ago :-(


sweetnakira
Regular Member


Date Joined Apr 2010
Total Posts : 119
   Posted 5/13/2010 5:24 AM (GMT -7)   
Hello everyone, Sorry I wanted to *bump* this so I can try and get as much info regarding the steroids and 6mp so I will know what to expect next week when I suppose to start them. I guess the anxiety is making me feel a little crazy with worry.
37 year old female and a proud mother of 8 kids (5 still living at home) and a very supportive Husband
Found out I had crohn's disease about 3 years ago, I haven't had proper treatment since :-(
Have had rectal abscess and now a rectal fistula, Medications I have taken for crohn's is..... Asacol and Entocort EC......Currently taking....Asacol
Suppose to start Steroid and 6mp next week (May 18, 2010).....I'm so scared :-(
Seton drain was put in on May 4, 2010
I also suffer from very bad anxiety and panic attacks for over 10 years (after my father passed away)
I have tried almost every medication for it but nothing worked or I had a bad side effect so for the last 6 years have been on xanax 1mg., 3x's a day
I started having joint pain about 7 months ago :-(


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/13/2010 6:08 AM (GMT -7)   
If you keep the steroid at no more than say 30 mg to start I think you will avoid most of the side effects. I find I do best starting at 30 mg and weaning down from there. If I go over 30 mg I tend to get more side effects. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease 
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"*

sweetnakira
Regular Member


Date Joined Apr 2010
Total Posts : 119
   Posted 5/13/2010 7:09 AM (GMT -7)   
Thank you so much Nanners, I will make sure the doctors can start me at 30 mg and no more then that. I was told by one young man in the hospital that he was started on 90 mg and I was shocked. He's now on 10 and when has a flare says he will go up to 20 and then taper back down. He was just telling me about feelings of irratability, not sleeping at night, feeling very anxious (and he doesn't have anxiety problems), basically feeling restless but I forgot to ask if that is when he first started or how he always feels. When he was talking to me he seemed very friendly and in good spirits so it slipt my mind to ask. I think I am also worried since my weight has went down to 106 pounds that I will have more side effects with any medication, I'm not sure if that has anything to do with it. Another concern is that I am very sensitive to medications. I just want to be prepared and know what I might expect as far as side effects because having panic attacks are horrible and I don't know if the xanax will even help if the steroids give me those problems. I wish I didn't suffer from anxiety/panic disorder because it only makes things worse for me because I get so anxious about starting new medications.
37 year old female and a proud mother of 8 kids (5 still living at home) and a very supportive Husband
Found out I had crohn's disease about 3 years ago, I haven't had proper treatment since :-(
Have had rectal abscess and now a rectal fistula, Medications I have taken for crohn's is..... Asacol and Entocort EC......Currently taking....Asacol
Suppose to start Steroid and 6mp next week (May 18, 2010).....I'm so scared :-(
Seton drain was put in on May 4, 2010
I also suffer from very bad anxiety and panic attacks for over 10 years (after my father passed away)
I have tried almost every medication for it but nothing worked or I had a bad side effect so for the last 6 years have been on xanax 1mg., 3x's a day
I started having joint pain about 7 months ago :-(

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