Is there anyone besides me that refuses to go on Pred?

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Joylu
Regular Member


Date Joined Jan 2008
Total Posts : 362
   Posted 2/17/2009 12:24 AM (GMT -6)   
I had a neighbor on it. My sister in law was on it.  Plus, the stories I have read here, and other places about the horrible side effects makes me know that my disease must not have gotten near as bad as it has for some that they were willing to go on that drug.
I already have pretty bad insomnia. I am already overweight and my MD wants me to "get that weight down".  I have terrible arthritis. 
My SIL went through terrible depression on the Pred, and then she had a horrible time trying to come off it.
Many times she said she wished she would just die. 
When my doc said he was going to put me on Ored, I was horrified.  I absloutely refused.
He wasn't pleased with my stance, but too bad.  HE isn't the one going to go through hell on the drug.
He never even suggested trying other options as many of your doctors have.
It went from Asacol, and when that didn't work right away, he wanted me to go on Pred.
Anyhow, does anyone feel as strongly about this as I do?
I go with quality of life, and even though my quality if life is not great at this time, with me being almost housebound. At least I am not going through med hell, and housebound too.
Thanks for any input you have.

subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 2/17/2009 2:52 AM (GMT -6)   
I refuse to go on it again.

I figure that Prednisone is a temporary fix. Eventually, it will stop working, and then I'll have to switch to a stronger medicine. And then eventually that medicine will stop working, and I'll have to switch to an even stronger medicine. And then that medicine will stop working,... You get the picture. In the end, no medicine will work, and I'll have to get my colon removed. I will have side effects from the medicines I took in addition to side effects from having my colon removed. I might as well just get my colon removed.

I really don't want a J-pouch though. The idea scares me. That's why I've been searching and trying natural treatments. Luckily, Probiotics, fecal transplantation, and diet have been able to put me in remission. I think there is more chance for natural treatments, which improve my health, to keep me in remission than medicines, which hurt my body and do nothing to fix the causes of my Colitis. This is the case for me anyway. Others may not have had much success with alternative treatments and would say that they haven't been able to get into remission without taking medicine.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics and Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


JM21204
Regular Member


Date Joined Dec 2008
Total Posts : 254
   Posted 2/17/2009 6:13 AM (GMT -6)   
I take it only when I have to. My doctor wants me to stay on it at a "lower" dosage to see if it prevents flares but I'd rather get flares 3-4 tiimes a year and take pred to make it go away then stay on a lower dose non stop. After I give birth to my daughter any day now, we are going to discuss trying new meds besides prednisone. But yes I agree, it is miserable to be on.
33 yr old female
Diagnosed with Pancolitis in 1/2007
Baby due 3/2009
Meds:1600 mg Asacol a day, Ferrex, Pre-Natal Vitamins, Lovenox, on and off Prednisone (40 mg then taper)
 


oh not again
New Member


Date Joined Apr 2008
Total Posts : 5
   Posted 2/17/2009 10:53 AM (GMT -6)   
I think that prednisone made me feel worse than the colitis if that is possible. My body heart so bad I could hardly move. Then I went on 6mp. That just about killed me. I ended up in the emergency room and they said I had a kidney stone. Got home and read that if you have flank pain it could be from the 6mp. Guess the ER docs couldn't figure it out. Sorry about the tant but I say we are all on our own to try and figure this out. I hate even going to the doctor as I know more than they do. I live and read about UC.
I told my doctor that I would have to be on my death bed before taking prednisone again!!

Thanks for Reading,
Garrett

JingleBell
Regular Member


Date Joined Oct 2008
Total Posts : 80
   Posted 2/17/2009 11:31 AM (GMT -6)   
As a kid, I spent almost 3 straight years on high doses of prednisone. A "new therapy" my doctor called it. I refuse it take it any more.
 


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 2/17/2009 12:09 PM (GMT -6)   
i have been on and off this horrible drug for years...currently on 60 mg...
you need to make a decision whether the benefits outweigh the cons.
yes, it can be horrible. i hate it...makes me feel like crap, not sleep...my wife thinks i become the biggest a-hole in the world...
BUT it has had a history of making my gut symptoms MUCH BETTER...so...i guess it's the double-edged sword.
My PCP suggested xanax if i need it on the pred...that helps- i don't take it regularly, but when i need it i have it.
also low sodium diet helps with moon-face...
good luck whatever your decision is!!!!!

UC in Memphis
Regular Member


Date Joined Jan 2009
Total Posts : 67
   Posted 2/17/2009 12:12 PM (GMT -6)   
I love Prednsione. It made me feel so much better and rather quickly. Insomnia is the only side effect I experience and as bad as it can be, it is totally worth it.
Male, 30
Dx:Moderate-severe UC 12/24/08
Lifelong GI issues including an intesusception at age 4
Current meds:
Lialda (2x) 12/24-present
Prevacid
Entocort EC 02/17-present (9mg)
Prednisone 12/24-01/05 (40mg), 01/06-01/19 (20mg), 01/20-02/16 (10mg), 02/17-present (5mg) 
 
 


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/17/2009 12:29 PM (GMT -6)   
I also refuse to go on it. But luckily my GI feels the same way. He is very relunctant to put anyone on it because of the side effects and long term ramifications. The one and only time I have ever been on pred was for a short period for arthritis. I couldn't even get past the first week at 10mgs. I had terrible insomnia - not good for a chronic insomniac. I have however been on many injectable cortisteroid therapies. It's slightly different and only a small portion is systemic. Now THAT is not too bad. Also the steroid enemas aren't that bad either.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
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notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16732
   Posted 2/17/2009 12:35 PM (GMT -6)   
I am fortunate to not need it at this point and hopefully I don't need it any time in the near future. I don't want to ever have to take it but I know if and when the time comes that I am seriously sick and nothing helps, I would have to give it a try. It is that or IV infusions or surgery. Taking medication every day gets me down, no matter what kind of medication it is, I am thankful some of the less invasive drugs seem to be doing the trick for now. I am hoping it stay this way,

Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December but had symptoms months ago - Treating with Asacol (feel hopeless)


Howright
Regular Member


Date Joined Oct 2008
Total Posts : 86
   Posted 2/17/2009 12:54 PM (GMT -6)   
 
I am sometimes a little put-off by the prednisone horror stories.  I actually compare them to pregnancy and labor stories where when you're pregnant everyone insists on telling you their horror story just to scare the crap out of you and make you feel as miserable as they did.   
 
I think it affects everyone differently.  I have been on it 3 times and the only real short term side effect I had was the jitters for the first day or two because of the high dose.  I am hungry in teh beginning but I can honestly say it's manageable. 
 
I realize that some people truly can't tolerate it well but you won't know if it's for you or not unless you try it.  It will make you feel better right away, you'll just have to manage the side effects if you have them.  Just do what's right for you, you might find you can tolerate it and you'll feel a lot better than if you struggle for a long time with a flare. 
 


 
Diagnosed January 07 - but realize I've been living with minor flare-ups for 10+ years. 
 
Asacol 2 pills/3 times a day.
50 mg Imuran daily.

Post Edited (Howright) : 2/17/2009 10:59:33 AM (GMT-7)


Mtnhawk
New Member


Date Joined Feb 2009
Total Posts : 16
   Posted 2/17/2009 1:10 PM (GMT -6)   
I havejust recently lost my job. 5 weeks now. I had been in remission for several years, do to all the stress it is back full blown. I now have no insurance and have to pay out of my pocket. I wanted Asacol, but the cost is crazy, so I am back on Pred. Only on 20 mg. a day so far, but I now remember all the things I don't like about it. Is there anything out there that works fast to stop frequent trips to the bathroom?

Howright
Regular Member


Date Joined Oct 2008
Total Posts : 86
   Posted 2/17/2009 1:21 PM (GMT -6)   
Mtnhawk said...
Is there anything out there that works fast to stop frequent trips to the bathroom?
Bummer about your job, that would definitely be enough for me to flare.
 
Unfortunately prednisone and time with the right medications is about the only thing that I found to stop the frequent trips. 
 
Diagnosed January 07 - but realize I've been living with minor flare-ups for 10+ years. 
 
Asacol 3 pills/3 times a day.
 


dodge08
Regular Member


Date Joined Feb 2009
Total Posts : 31
   Posted 2/17/2009 2:03 PM (GMT -6)   
I was put on predisone in December to try to help with my flare, it didn't slow it down much, so ended up on Remicade. I am still tapering down from it - was on 40 mg and now down to 15 mg. I do not like the way it makes me feel at all. I hope to get off of it and just use the Remicade if can ever get off these antibotics to get another infusion!
Male 38, diagnoised in 1998, first major flare in November 2008, have had 2 remicade infusions


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16732
   Posted 2/17/2009 3:44 PM (GMT -6)   
you should look into the asacol patient assistance plan. That or buy from Canadian pharmacies. It has saved me, I also have no insurance.
Mtnhawk said...
I havejust recently lost my job. 5 weeks now. I had been in remission for several years, do to all the stress it is back full blown. I now have no insurance and have to pay out of my pocket. I wanted Asacol, but the cost is crazy, so I am back on Pred. Only on 20 mg. a day so far, but I now remember all the things I don't like about it. Is there anything out there that works fast to stop frequent trips to the bathroom?

Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December but had symptoms months ago - Treating with Asacol (feel hopeless)


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 2/17/2009 6:26 PM (GMT -6)   
UC in Memphis said...
I love Prednsione. It made me feel so much better and rather quickly. Insomnia is the only side effect I experience and as bad as it can be, it is totally worth it.


I didn't experience any side effects that I didn't like when I was on Prednisone, other than getting sensitive teeth that is.

The part I don't like about Prednisone is that it accelerates the natural aging process (at least while one is on it). That is something one can never get back even with calcium supplements. As I said, Prednisone made my teeth sensitive; that means it wore down the enamel on my teeth. That's scary. It's been two years since I've been on Prednisone. My teeth are less sensitive now. Thank goodness for that.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics and Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


vega19
Regular Member


Date Joined Sep 2008
Total Posts : 91
   Posted 2/17/2009 8:06 PM (GMT -6)   
I've been on prednisone twice. The first time wasn't so bad. I was started on 60mg in the hospital and the only side effects were the insomnia and increased appetite. My hair also started falling out pretty bad for a while when I got down to the lower doses. The second time, however, was horrible. I started on 30mg. I didn't have any insomnia or increased appetite but the mood swings were unbearable. I would go from enraged to depressed to calm to just plain crazy! My poor family had to deal with the uncontrollable crying or yelling and getting irritated easily. I've also refused to ever take it again. I'm doing okay now UC wise but If it came down to flaring or pred I'd rather suffer for awhile before going back on it.

31 year old female diagnosed with UC (entire colon) Feb 2008
(4) 400mg Asacol 3x a day
Remicade 10mg/kg every 8 weeks
Omega 3 supp, calcium supp
probiotic


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/17/2009 8:57 PM (GMT -6)   

UNlike some - I got the horrible side effects from all mesalamine medications and told the doc never again.  I am enjoying prednisone so far- 4 days on 40 mg. the bleeding stopped after months of bleeding mild to moderate!  Now down to 30 mg.  I see sutle side effects but NOTHING like the cramping, blood, urgency,etc.  I can handle them.  I have actually lost a couple lbs. and I am obese.  NO extra appetite or insomnia.  But - I am 68 and long term effects to do not bother me.  I just hope I can get down to at least 20 and keep feeling this same way since all maintenance medications I have tried made me VERY sick!! 

I did not want to go on prednisone because my husband and my dog had bad reactions.  I do take Xanax for the mood swings,etc.

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only few cm. left to heal in rectum - tried Proctofoam for weeks - no luck.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Tried hydrocortisone for two weeks with no change.
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 
 
 
 
 
 


UC in Memphis
Regular Member


Date Joined Jan 2009
Total Posts : 67
   Posted 2/17/2009 10:44 PM (GMT -6)   
kops2da said...

UNlike some - I got the horrible side effects from all mesalamine medications and told the doc never again.  I am enjoying prednisone so far- 4 days on 40 mg. the bleeding stopped after months of bleeding mild to moderate!  Now down to 30 mg.  I see sutle side effects but NOTHING like the cramping, blood, urgency,etc.  I can handle them.  I have actually lost a couple lbs. and I am obese.  NO extra appetite or insomnia.  But - I am 68 and long term effects to do not bother me.  I just hope I can get down to at least 20 and keep feeling this same way since all maintenance medications I have tried made me VERY sick!! 

I did not want to go on prednisone because my husband and my dog had bad reactions.  I do take Xanax for the mood swings,etc.

ElaineNY

Glad to hear it is going well so far.  I never gained weight, changed appetite much or anything like that.  I felt joint pain once or twice and then the insomnia (which I had occassionally regardless of Pred).  It got me feeling better than I had felt in a long time.

Hope it keeps going well for you.


Male, 30
Dx:Moderate-severe UC 12/24/08
Lifelong GI issues including an intesusception at age 4
Current meds:
Lialda (2x) 12/24-present
Prevacid
Entocort EC 02/17-present (9mg)
Prednisone 12/24-01/05 (40mg), 01/06-01/19 (20mg), 01/20-02/16 (10mg), 02/17-present (5mg) 
 
 


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 2/17/2009 11:37 PM (GMT -6)   
My daughter felt so out of control and had miserable acne, hair loss, moon face, that she said she would never do it again, even if it meant losing her colon. She told the ER that she was allergic to it, and we laughed a bit...that data has stayed in her charts thru 2 more hospital stays.
It is a miracle drug for some, and an inexpensive drug that saves lives, but for some people, the side affects are just too much to bear. Count her as a "just say no" kid...
Daughter,15 diagnosed 1-08 w/ UC .
Asacol, Prevacid, Flagyl, Prednisone 50mg, major flare, now off!, Hosp. four x this yr. Low residue diet still, an
6MP, Colazal ,horrible acne/moon for awhile- No more Pred,but 6mp isn't working. Cortifoam enemas 4xweek
Trying probiotics, Niferex, fish oil, and Mangosteen for kicks.
update:
Had 4th infusion of Remicade(12-08), and still on all of the other drugs, except Flagyl and Pred. Better, no remission. In a drug trial for children. Living on a flare's edge.


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 2/18/2009 12:21 AM (GMT -6)   
Mtnhawk said...
I havejust recently lost my job. 5 weeks now. I had been in remission for several years, do to all the stress it is back full blown. I now have no insurance and have to pay out of my pocket. I wanted Asacol, but the cost is crazy, so I am back on Pred. Only on 20 mg. a day so far, but I now remember all the things I don't like about it. Is there anything out there that works fast to stop frequent trips to the bathroom?
also talk to your doc...s/he may be able to give you a ton of samples...I know drs. are feeling it with the economy also...I lost my ins. and COBRA is $1400 a month!  I called my GI's office and he is amazing...He's taking cash at a very reduced rate until I have ins. again.  He keeps saying "let's get you better and then we'll worry about the other stuff!" 
 
Even if you can't grab an appt. let them know your situation and ask if they can help you in the short term...good luck!

Buckeyeinfl
Regular Member


Date Joined Oct 2006
Total Posts : 114
   Posted 2/18/2009 9:16 AM (GMT -6)   

Hi Joylu and others who refuse it,

I say good for you for standing up for yourself!  That said, I know there are some who absolutely need it, but if you don't, please try to find something else...try different antibiotics first or a combination of antibiotics.  I'm convince UC is bacterial in nature, but more on that later.  Our story may shock you, but the little talked about adverse side effect of Osteonecrosis (ON) (aka avascular necrosis and aseptic necrosis) is very real as we found out. 

My daughter was diagnosed with UC in late Aug 06, and by Nov 06, UC spread through her gut like wildfire.  Nothing helped, including the Pred, and she became resistant to all meds.  Her first round was at 60mg with a taper, then hospitalized at 90mg of solumedrol with worsening symptoms, and hemmoraged in the hospital.  She was then referred to surgery and given the choice of cyclosporine or surgery, but after doing research on success stats for that and never wanting to be that sick again, she decided to have surgery...her colon fell apart in the surgeon's hands on Nov 27th, 06...just 3 months from beginning to end. 

Jpouch surgery went very well and she's doing fantastic digestively.  After surgery, she was told she must take probiotics for the rest of her life to maintain good gut flora and to ward off pouchitis.  Pouchits is like active UC symptoms...which are often cured with antibiotics....and much of the research suggests that pouchitis is bacteria related.  She has taken VSL #3 since her takedown and (knock wood) has never had pouchits. 

Fast forward a year later, her knee starts hurting, swollen, doctors think it's either arthritis from the UC or RA, which tests came back all negative for arthritis.  An MRI showed "bone infarcts" - dead areas of bone.  Long story short and many months of panic and despair later, we found an orthopedic specialist who works with ON patients and ordered aggressive MRI of all major joints BECAUSE she was on high dose steroids.  She was 20 at the time.  She has ON in her right shoulder, both elbows, both wrists and in her hands, both knees and both ankles.  Some joints are not painful, some are, but had we not found the specialist and sought treatment, we would not know the extent of this disease brought on from the use of Prednisone. 

My thing is this:  yes she was very sick, but even a very sick person wants to know what they are up against.  Much of the documentation and even the doctors do not disclose this risk...osteoporosis is disclosed, as is bone pain and fracture, which leads you to believe that may happen from the osteoporosis.  If you know it can happen, then you are informed and accept the risk and all that comes with it.  It is a devastating disease that when brough on from the use of steroids, is often bilateral.  We were blindsided and feel like this risk is not disclosed to us.  It should be..especially for those who decide to take it for less threatening conditions. 

I'm not trying to scare anyone, but to raise awareness.  If you have painful joints, clicking or popping sound, PLEASE have the joint MRI'd because ON will not show up on x-ray in the early stages and bone scans often do not pick up all areas of ON...and early treatment is key to preserving your natural joint. 

 



20 yo daughter w/ Pancolitis
diagnosed 8/30/06
Step 1 colectomy/jpouch creation 11/27/06
Step 2 takedown 2/9/07
VSL #3 DS
21 yo Daughter diagnosed with right shoulder, bilateral wrist, 
bilateral elbow, bilateral knee, and bilateral ankle avascular necrosis
(aka Osteonecrosis) as a result of Prednisone use
 

Post Edited (Buckeyeinfl) : 2/18/2009 7:29:10 AM (GMT-7)


thatfield
Veteran Member


Date Joined Jul 2008
Total Posts : 823
   Posted 2/18/2009 9:29 AM (GMT -6)   
I did not love being on pred and I advocate for trying other things BUT I will take it again if needed.  It was the only thing that got my last flare under control.  The side effects for me were very insignifcant when compared to the freedom from the toliet and the bleeding...
Dx 2006 right after the birth of my daughter
Lialda now down to 1 pill a day!
Canasa on and off as needed
Probiotics Daily
 


Mommy pooh
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 2/18/2009 10:51 AM (GMT -6)   
My first flare was during my last semester of college. I was a newly wed and trying to finish school. I ended up having to quit my job and do everything I could to keep up with my school work. All I could do was go to class, come home and sleep, try to do homework in the evening, and "try" to sleep at night to do it all again the next day. Somehow I made it through and graduated and was flare free for 2 years. With my second flare, my life was totally different. I had a baby and another baby about the same age that I babysit in my home. I told my doctor there was no way I could take Pred and be responsible for children. I wan't to crawl out of my skin and even had thoughts of harming myself on Pred. He let me take Entocort which didn't have all the bad Pred. side effects, but also didn't stop my flare. I ended up on 6MP to stop my flare. Pred may have ended that flare a lot faster but there was no way I could go through that with babies in the house. I'm out of my mind on Pred. and I hate the world and will bite anyone's head off. I will never take it again.

My 2 year old had croup last week and they gave her 4 days of Pred. to open up her air ways. She was a total monster every day on Pred. She cried non-stop and was up at least 4 times a night. She is a very happy child and has slept through the night since she was 8 weeks old. Thank God, her dose is finished and she's getting back to herself today.
  • 26 years old, married, Stay-at-home Mommy to 2 year old daughter 
  • Ulcerative Colitis since Sept. 2004
    • 1st flare Sept-Nov 2004
    • 2nd flare Aug. 2007-July 08 
  • Currently taking:75mg 6MP, 4 Lialda, Loestrin 24, Allergy meds., Maxalt for migraines and allergy shots once a month 
  • 10/6/08 Found a 1cm kidney stone in right kidney.  Had the stone blasted and passed the fragments.

 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 2/18/2009 11:10 AM (GMT -6)   
It is awful, but to me refusing it without ever trying it is like saying, I won't give myself a shot, or I can't swallow pills, or use a public bathroom (good grief) but if you need it you will do it.

It doesn't bother me that much, not everyone has these terrible reactions. Fortunately there are many other things to try first now, there did not used to be much choice.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Probiotics (Ultimate Flora, 50 billion). Doing much better, but still having some bad days. 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/18/2009 11:55 AM (GMT -6)   

I would like to say to those of you who have the emotional/moody/etc. problems with prednisone - if it is working - putting you in remission - ask your primary care doc for something to stay calm, etc.  I take Xanax in small doses.  Forgot one time and can see that I need it to go along with the prednisone - 1/2 pills every four hours works for me - just keeps me calm enough to deal with every day!

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only few cm. left to heal in rectum - tried Proctofoam for weeks - no luck.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Tried hydrocortisone for two weeks with no change.
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 
 
 
 
 
 

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