Doing it my way - for now - with prednisone and 6MP...

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kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 4/2/2009 5:48 PM (GMT -6)   
For those who don't know me and my history - short update.
I am 68 and diagnosed with UC (proctosigmoiditis) about a year ago.  Tried everything in the 5ASA medications - enemas, foams, Lialda, Colozol, etc. etc. with little success but many side effects and had to give them all up.
Recent sigmoid in November showed still inflammation and bleeding mostly rectal but also about 30 cm. up the left!
Doctor prescribed (with some reluctance on his and my part) prednisone taper, and to add 6MP later. 
So - 40 mg. one week (bleeding stopped in 4 days), 30 mg. one week, and now 20 mg. for the last 7 weeks.  He added 6MP - 50 mg. - on March 1.  He said to taper to 15 mg. prednisone in two weeks which was last week.  AND - he mentioned raising 6MP to 75mg.
I tried calling last week because two weeks into 20 mg. I started bleeding (mostly mixed with mucous) every morning two weeks after tapering to 20 mg.  I got no answer as to what to do. 
I had to go to my Dad's funeral over the weekend - continuing to take 20 mg. prednisone and 6MP.  I called again and left a "stern" message on Tuesday to call me back - NP/doctor/someone concerning what to do now.
Today I called this morning and stated that I was supposed to taper to 15mg. last week but still have blood.  I don't have many other symptoms - feeling pretty good but still quite a bit of mucous/blood mixed every morning, lower cramping and gas.
I took Imodium and Pepto to get through the weekend of a funeral and cemetary, etc. but nothing changed much otherwise.
OK - decided to just go it on my own - I rarely do that without professional advice but I guess no one really wants to give me any at the gastro doc.
Tonight I am taking 75 mg. of 6MP and tomorrow taking 15 mg. of prednisone. 
I told my husband he can be prepared to call the ambulance or take me to the hospital if all goes wrong.  I am only kidding.  Pretty sure the bleeding will get worse and side effects from 6 MP may get worse - we will see. Really too early for the 6MP to work.
Thanks for being here for me - I will let you all know how it goes.
My Dad was 96, very sick and it is a blessing he went as soon as he did.
ElaineNY

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 4/2/2009 6:14 PM (GMT -6)   
Elaine, I'm glad you're back! I'm sorry to hear about your dad, but it sounds like he lived a very full life. I lost my great-grandma last year at the age of 102...she was healthy and enjoyed life right up to the very end as it seems your dad did.

That's frustrating you're not hearing more from your GI! I hope everything goes well with upping the 6MP.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, 40mg 30mg 20mg 15mg of Prednisone (quick taper), Culturelle probiotic, and Zoloft (25 mg).


quincy
Elite Member


Date Joined May 2003
Total Posts : 31006
   Posted 4/2/2009 6:38 PM (GMT -6)   
Hi Elaine...sad to hear about your dad, but I totally understand regarding your last statement when one is gravely sick and the time to expire equates to probable extended suffering. Deepest condolences to you.

I can't help with the pred taper...just hope you feel better soon.

Keep us posted,
quincy
*Heather* Status..Asacol  (3 x2 daily); Salofalk enemas nightly for flares, tapered to maintenance  mild flare nightly enemas
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


mollymcbutter
Regular Member


Date Joined Mar 2009
Total Posts : 130
   Posted 4/2/2009 6:42 PM (GMT -6)   
HI Elaine,

Sorry you are going through all this. Let us know how the uping of the 6MP is goes. I have had this for 40 years and know what you are going through. Just recently last couple of years of really having problems. I just finished Prednisone and am taking 6MP only for a week. Hope this kicks in haven't seen blood in a long time, unusual because that is what I always saw. But the gas caught up in my intestines is the worst right now. Wow, sounds like your dad had a good (hopeufully) long life. My mom will be 92 in a few months and she is doing very well for the most part. Keep us posted on what is going on....MollyMcB

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16744
   Posted 4/2/2009 7:42 PM (GMT -6)   
I was thinking about you and wondering why I haven't seen you around. I am sorry about your father and about the fact that you're stressed about your UC on top of your loss. I haven't taken pred or 6mp so I can't give much advice. I hope you get in touch with someone soon.

Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December 08 but had symptoms months ago - Treating with Asacol 400mg (9 a day)


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 4/2/2009 8:27 PM (GMT -6)   
     Hi Elaine.....welcome back.  Again, sorry about your dad.  Your GI doctor may boost your dose of prednisone a bit.  Mine did before the 6MP kicked in.  It does take about three months to take effect along with the prednisone.  Hang in there girl!
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 4/2/2009 8:42 PM (GMT -6)   
Christine - thought he might do that too but since I can't get anyone to call me I am doing as he told me - lowering it to 15 mg. and just see what happens!  I am pretty sure the bleeding will increase, etc. and I will call and tell him so - on his machine if I have to.  Sorry if I sound "MAD" but I am sort of!  Just been on 20mg for so long - gotta go someplace and see what happens as the bloody/mucous should not be (should it?).  Just hoping the 75mg of 6MP I just took does not make me sick - side effects are there now but not too bothersome - headache, dizzy, sweating, etc. a little.  Nausea - oh yes, but had that for years!!  Blood testing is April 14.
ElaineNY

mollymcbutter
Regular Member


Date Joined Mar 2009
Total Posts : 130
   Posted 4/2/2009 10:00 PM (GMT -6)   
Elaine,

Are you finding that you are tired on the 6MP...Molly

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 4/3/2009 7:57 AM (GMT -6)   
     I get tired on the 6MP.  I am only taking 50 mgm one day and 25 the next.  Been doing this for several months.  Doc had me on 75 mgm and my white count was WAY too low.  Even now it is 2.9.  I try to stay away from crowds and people whom I know have colds, even my own grandkids.  Cannot take chances.
     How long have you been trying to reach your doctor Elaine?  Mine always calls me back the same day.  May not be within the hour, but certainly the same day.  If he has hospital duty, he checks his messages and has his nurse call me with instructions.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 4/3/2009 9:44 AM (GMT -6)   

My doctor or NP or even a nurse ALWAYS calls back by 5 p.m. same day you call but this time - no one has called.  I got pretty "FIRM" on the last call and said I really needed to talk to someone about the prednisone taper.  Still no word.  This morning I had a smaller amount of blood mixed with the mucous and just not sure how much prednisone to take - stick with 20 mg., down to 15 like he said when I saw him or go up to 25. mg.  Guess I may try one more call - yikes.  I know that I am known there as one LOVES to talk and take up their time so maybe that is why I am not hearing from anyone.  You know - all they have to say is "I gotta go".  I am not stupid!

To answer others - NO, I don't think 6 MP makes me tired but then I am always tired anyway.  I am old, obese, and take Xanax to stay calm!!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008  Cannot tolerate mesalamines, Canasa, etc. Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred.
Started on prednisone Feb.7, 2009 - tapering to 20 mg. for two more weeks and then down to 15 mg.etc.  Added 6-MP Feb. 28.
Added Anusol suppositories - March 16 - see doc in 3 months. 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 

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