Prograf or another name is tacrolimus

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joolspirog
Regular Member


Date Joined Jul 2007
Total Posts : 29
   Posted 8/29/2008 11:32 AM (GMT -6)   
Hi all,
 
I am a 44 year old male who lives in the UK, we are not able to have Remicade as it is not licensed, it is for Crohn's but not UC. I have been diagnosed a year and have not really been off of the steroids, got close and was going to the gym but broke down again and then was tried on azathioprine and 6-mp but both caused bad side effects. I was ill for 3 years prior to diagnosis.
I am now being given prograf/tacrolimus starting Wednesday and am very scared, extremely depressed and in a dark place.  Fear is ruling my life and I feel abandoned and friendless.  I look after my elderly parents, both in their 80's and very ill and have no real life.
Does anyone know about this drug and does it work, also any problems to look out for would be great.
 
Thanks for taking the time to read my post.  Help !!
 
Julian

princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 8/30/2008 12:21 PM (GMT -6)   
My GI thinks Prograf is very promising for UC.... but I broke out in hives while on it a day so he said I should not take it as that was a reaction. I hope the Prograf works for you. I am concerned about your depression. Is there a therapist you could speak to, or if not, your GI or someone. I know this disease can get me down sometimes but it sounds like you are beyond down and should seek some help. Take care Julian.
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08,  Humira started 4/4/08, 6MP started 6/24/08


joolspirog
Regular Member


Date Joined Jul 2007
Total Posts : 29
   Posted 8/30/2008 2:24 PM (GMT -6)   
Hi Princess and thank you for your reply as I have found getting ANY help in the form of really talking a problem, none of the so called "specialists" have seemed to care. This specialist has now twice wanted me to take this drug and I note that it has almost exclusively been used in trials and I have no back up or support if things go wrong. If I were in a hospital while on this and under supervision then maybe I would try it but I cannot, with all due good conscience, take it after reading it's side effect profile and how high the incidence of these side effects are. What worth has life when you are then open to various cancers, high blood pressure, diabetes and so much more ?. Then there is the part about not venturing into sunlight, I simply cannot bear to live like that and for what ?. I do not value my life so highly so as to live it in such poor circumstance, to hold on for holding on sake.
You are very correct about me being maybe beyond depression, I have suffered with a chronic back problem for years, that was hard enough and then to care for my parents, in their 80's, well it has all become too much and I am unable to take anymore. The other problem ( one of many) is that if I do experience the side effects then I am literally abaondoned and to get contact with the specialists is like getting blood out of a stone.
I think I have to reconcile myself to the fact that I have this disease, that it will be bad and often and to then deal with it. The specialists do not even know whether it is an auto immune problem or a bacterial response so we are the guinea pigs for them and I for one am not prepared to go through that.
I, simply put, have had enough, cannot take the glib remarks from the people that are making these decisions and need to try to calm myself. I am so sorry if this has burdened you in anyway, I do not mean to upset nor discourage but I do not think there are any miracles to come, hope it seems is my worst enemy.
At least I have made my decision and thank you so much for your reply. Funny but the part from a Bob Marley song comes to mind " Who feel it knows it Lord", well they do not feel it so do not nor will they know it. I am, like the R.E.M song says " Losing my religion" along with the plot. I think I have gone quite mad.
 
Bless you
 
Julian smhair

Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 8/30/2008 8:29 PM (GMT -6)   
Dear Julian:
I don't have many words of wisdom, as I am fighting this fight for my daughter. Just got back from the hospital today, but I read your post, and feel your pain.
Try to do things that make you feel good. Sometimes, just pretending you are happy, can bring good feelings to your body. There are people who care and will help you. Seek them out.
Unfortunatly, while folks do care at this site, they are fighting their own battles. They cannot
give you the face time you may need help you cope. A professional might replace a friend, and give you the courage to soldier on I don'twant to slip into handy platitudes, but tomorrow may get better. Life can turn around, and morning follows night. Take care of your self, keep seeking data, stay on the doc's, and remission is in your future. Stress is not your friend...
Fondly, Kathy
Daughter,14 diagnosed 1-08 w/ UC .learning from you all.
Asacol, Prednizone 50mg, major flare, now off!, Hosp. @U of C, Comers twice this yr. Low residue diet still
began 6MP, ,horrible acne, and fearful of future.
trying probiotics, Omega 3, and keeping up with doc visits.


joolspirog
Regular Member


Date Joined Jul 2007
Total Posts : 29
   Posted 8/31/2008 4:04 AM (GMT -6)   

Thank you very much for your reply and help, at least I have now made a decision NOT to take this stuff. It goes against every fibre of my being to do so as I just don't believe that our immune system needs lowering, I have enough infections on the steroids.  I am sorry but I, for my own sanity, will have to stop hoping it will get better as that is what has led me to this madness. I have spent thousands on fish oils, probiotics and the rest and I have found all claims to be snake oil. I do not discourage others but am now refusing to be a guinea pig. I do not know of any 2 people on the same regimen of meds.

Thank you for your kind words.

 

Blessing be upon you

 

Julian


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