Remicade and low platelets

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murf28
Regular Member


Date Joined Jan 2003
Total Posts : 78
   Posted 6/14/2008 10:38 AM (GMT -6)   
I have been on Remicade for nearly two years with great results. However, my platelets have been falling over the past 6-8 months. My doctor was not concerned about it until now. They have fallen to a point where they want to re-check every 4 weeks.

I have always been concerned about the possible consequences of taking Remicade long term. It is such a new drug and I am afraid that I will end up with cancer of something else if I continue on it long term. Now with the platelets falling my concern has turned into mild panic. I am seriously considering quitting the Remicade and letting the cards fall where they may. I am not opposed to having surgery. I was pretty set on doing it until my doc talked me into trying Remicade.

Has anyone else had low platelets? Anyone else as paranoid as I am about this drug???

MURF28

dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 6/14/2008 8:29 PM (GMT -6)   
I don't think you're paranoid. I think you're rightfully concerned. Remicade is a major drug that can have major side effects. It is good that your doctor is monitoring you so closely.

Have you discussed your fears with your doctor?
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring
 
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
30mg Pred until I get set up for Remicade
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


murf28
Regular Member


Date Joined Jan 2003
Total Posts : 78
   Posted 6/14/2008 9:28 PM (GMT -6)   
Thanks for responding! I had discussed my concerns with my doc before we started this. We had to negotiate a little bit. I asked him to monitor my blood work in shorter intervals, and he had to promise that he would let me know of any new adverse effects possibly related to Remicade. He has been great, even with a pain in the butt (no pun intended) patient like me. I learned the hard way that you really have to speak up for yourself in regards to your health care!

I am really considering stopping the Remicade at this point. It seems that every time I go in there is a new side effect to look for. Last week my doc recommended we do a chest x-ray "just in case", and now my blood work came back less than perfect. I have 3 kids under the age of 9. I just don't know if it is worth the chance....even if it is a small one....that something else may go wrong.

Thanks for you reply. It always feels good to know that someone has thought about you. I haven't posted in a long time, but I am glad that I did today!

murf

GardenerJames
Veteran Member


Date Joined Jan 2006
Total Posts : 616
   Posted 6/14/2008 9:42 PM (GMT -6)   
I understand your mild panic, I've been on Remicade for over a year and a half and have some serious, hardcore anxiety attacks.
Have you looked into what a low platelet count could indicate?
James
Asacol 4 tabs 2x daily www.myspace.com/gardenerjames
Forvia once a day - Probiotic twice daily - Methotrexate 3 pills once a week - Actonel once a week
Calcium supp. - 1 mg Folic Acid daily - Omega-3 once daily
13th Remicade infusion End of April


SANDYBEACH
New Member


Date Joined Jun 2008
Total Posts : 1
   Posted 6/15/2008 4:46 PM (GMT -6)   
Hi, I have been on Remicade for over five years.  I have not had a UC flare up since then.  That is the good news!
 
In the past two years I have had repeated staph infections.  Joint pain that has been unbearable. Lots of flu-like symptoms and for the last year pleuracy.
 
 
I thought my joint pain was maybe arthritis, (although I did not have arthritis before my remicade) because it gets really bad right before I have an infusion around 6 weeks.  I get my infusion and I almost instantly feel better with my joints.  Its like a miracle. 
 
 
 
Since reading these forums, I've notice a lot of people having joint pain.  Wow,  when I talked to my doctor about this, he knew nothing about the joint pain and remicade.  I can't believe how many people say they have joint pain.  He did test me for lupus and I was not positive. The pulmonary dr. tested me for rhematoid arthritis but I have not gotten my test results back. 
 
Since I have not really felt good for a long time I am considering quitting my Remicade.  The thing that scares me the most is the pain in my joints before my infusion.  But I'm wondering if the joint pain is being caused by the Remicade instead of the remicade helping my joints
 
Sorry I am rambling on, but I just found this site and hope that you guys have had some of the same things and could help.  Thank You

murf28
Regular Member


Date Joined Jan 2003
Total Posts : 78
   Posted 6/15/2008 10:49 PM (GMT -6)   
I also experience joint pain periodically, but it is usually after my infusion. My doctor has told me that he has found this to be quite common. It is bearable for me, but concerning.

As I have looked at the internet (which I know can be dangerous), I have found that low platelets are a symptom of lymphoma. I have known since the beginning that the risk of lymphoma while still fairly low is increased when taking Remicade. I am going in tomorrow for a chest x-ray which I pray will be clear. I have felt around my lymph nodes and feel nothing. I am probably overreacting to this low platelet thing a bit, but I always feel that it is better to be safe than sorry.

I will update later with x-ray results.

GardenerJames
Veteran Member


Date Joined Jan 2006
Total Posts : 616
   Posted 6/16/2008 9:20 AM (GMT -6)   
My heart goes out to you murf and I will be hoping for you to have good results. I know how it feels to have this anxiety and have many times thought about going off remicade and just having my colon removed.
Good luck today!
James
Asacol 4 tabs 2x daily www.myspace.com/gardenerjames
Forvia once a day - Probiotic twice daily - Methotrexate 3 pills once a week - Actonel once a week
Calcium supp. - 1 mg Folic Acid daily - Omega-3 once daily
13th Remicade infusion End of April


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1754
   Posted 6/16/2008 3:11 PM (GMT -6)   
I just started Remicade this past weekend after a lot of convincing from the GI's but I'm still not too sure about it.

I hope everything comes out okay. Good luck and let us know the results!
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, 1 DanActive, Remicade (1st infusion 06/08), 2.4 g Lialda


Spyonyou87
New Member


Date Joined Jan 2009
Total Posts : 1
   Posted 1/21/2009 1:22 PM (GMT -6)   
I have been on remicade for almost a year now, I too have had great results with it clearing up over 98% of my skin issues, until now. Last November I lost my Ins. and missed (1) infusion, and in Dec. I started back up again. Never prior to remicade had I felt the arthritis like I do now, I dont know if missing the infusion trigered my arthritis but at times its unbearable! Hand, feet, neck, legs, knees all making my life hell. I have also noticed that now I slowly have spots re-appering. I am on 6 week infusions and noticed after my last 2 infusions that at around 4 and a half weeks the arthritis kicks in and leaves me missing work and other activities for the last 2 weeks of the infusion. My Dr. said that there is no way to get the infusions sooner and only recomended that I see a pain manager for the arthritis. After reading all the posts on here I feel that maybe my body is slowly starting to reject the remicade with an autoamune or something. cry Although I was very happy at the begining I am thinking about discountinuing remicade due to the crippling pain from the arthritis and other long term issues. Any advise will be greatly taken in.. Thanks
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