Going to be starting study drug

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KnittingMom
Regular Member


Date Joined Nov 2009
Total Posts : 26
   Posted 5/13/2010 8:31 AM (GMT -7)   
My life, healthwise, seems to be upside down right now.  I am going to be starting on a study drug - just going through all the protocol that has to be done prior to the first treatment.  I was on Mezavant, but that quit working for me.  My doctor is wanting me off Entocort - he has me weaned to 1 a day.  I am hating all this protocol stuff and I just want my first infussion.  I have an appt next Thursday to go over the last of all the paperwork and then the following week will be my first infussion.  Through all this the stress of worrying about our little unborn grandchild hasn't been helping either.  My daughter in law has placenta insufficientcy and is being monitored very closely with the hopes that they baby can stay inside till May 25th, but at the first sign of additional distress they will take him immediately.  They are about 2000 miles away it it is really feeling like 200,000 miles with this going on.  As soon as they get the word that the baby is going to be born I will be booking a flight and heading there right away, but the waiting is so stressful. 
 
Seems this is more like an 'oh woe is me' post.  Just feels like nothing is following the proper course right now.
51 year old woman, married 30 years.  27 yr old son married to a wonderful woman.  7 year old grandson with new baby due the end of June!  24 yr old daughter living with her fantastic boyfriend.
Diagnosed with Crohn's in 1990 following resection surgery.  Put on no meds on discharge.
5 years ago put on salofalk.  Early 2009 taken off salofalk put on entocort 3 tab/day, mezavant 2 tabs/2 x's day, methotrexate inj once a week.  Folic, Vit D, calcium, vit c, multi vit, tylenol arthritis.
Will be taken off methotrexate after next dialation (scheduled for asap) and put on IV drugs, just not sure which one yet.
 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/13/2010 9:06 AM (GMT -7)   
Vent away honey, thats what we are here for. I hope the study gets going quickly for you so you can get feeling better. I will keep your DIL in my prayers that the little one stays in there and continues to grow. Big hugs to you!
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"*

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 5/13/2010 10:45 AM (GMT -7)   
I understand your frustration with the study protocol taking so long.  I did a clinical trial when Cimzia was still in Phase III clinical trials and yes, you have to fill out a lot of paperwork and have a lot of tests done before it begins.  But, those protocols are a good thing, especially for those of us who end up taking the drugs once they are on the market (or if it doesn't get approved due to side effects or ineffectiveness).  So yes, you're in pain now and want it to happen quickly, but it's much better for everyone in the long run to have the proper documentation.  So, hang in there (and hope that you don't end up in the placebo group!).   

Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


KnittingMom
Regular Member


Date Joined Nov 2009
Total Posts : 26
   Posted 5/13/2010 11:04 AM (GMT -7)   
Thank you Nanners.
51 year old woman, married 30 years.  27 yr old son married to a wonderful woman.  7 year old grandson with new baby due the end of June!  24 yr old daughter living with her fantastic boyfriend.
Diagnosed with Crohn's in 1990 following resection surgery.  Put on no meds on discharge.
5 years ago put on salofalk.  Early 2009 taken off salofalk put on entocort 3 tab/day, mezavant 2 tabs/2 x's day, methotrexate inj once a week.  Folic, Vit D, calcium, vit c, multi vit, tylenol arthritis.
Will be taken off methotrexate after next dialation (scheduled for asap) and put on IV drugs, just not sure which one yet.
 


KnittingMom
Regular Member


Date Joined Nov 2009
Total Posts : 26
   Posted 5/13/2010 11:10 AM (GMT -7)   
I understand why the protocol has to be followed and I understand that it is for my safety as well as the safety of others who may get the drug in the future.  The impatience comes from feeling so horrible and just wanting some relief.   The study is past the placebo stage so I know I will in fact be getting the actual drug.  Had there been the chance of getting of getting a placebo I wouldn't of agreed to enter the study. 
51 year old woman, married 30 years.  27 yr old son married to a wonderful woman.  7 year old grandson with new baby due the end of June!  24 yr old daughter living with her fantastic boyfriend.
Diagnosed with Crohn's in 1990 following resection surgery.  Put on no meds on discharge.
5 years ago put on salofalk.  Early 2009 taken off salofalk put on entocort 3 tab/day, mezavant 2 tabs/2 x's day, methotrexate inj once a week.  Folic, Vit D, calcium, vit c, multi vit, tylenol arthritis.
Will be taken off methotrexate after next dialation (scheduled for asap) and put on IV drugs, just not sure which one yet.
 

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