how many times have you taken pred?

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LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 7/3/2009 12:37 PM (GMT -6)   
I am in my second flare ever, and second within a year. I was on pred for my last one then Pentasa to help keep in remission. I did pretty good with the odd blip for about 6 months. Now I am flaring again.
I called my doctor and he says to give it a couple more days (been about 2 weeks) and then if things aren't slowing down we might have to go back to the pred.
I am nervous about taking it because I hear all the horror stories. Also, how many times can I take it before it's on to the next step and maybe surgery someday.
Basically, I just want to know how many times have most of you taken prednisone? and are you still ok?
Are there other options that work as well?
 
Chuck - 28 yrs and counting
 
Diagnosed w/ UC Dec 08 - pancolitis
 -----------------------------------
Pentasa 500mg 2pills-4x daily
Prednisone 50mg Calicium + Vit D
Multivitamin, vitamin C, probiotics, fish oil
 
"If you can solve your problem, then what is the need of worrying? If you cannot solve it, then what is the use of worrying?"


basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 7/3/2009 3:39 PM (GMT -6)   
I've only had one flare and I was on pred for that. I absolutely hated it and I won't ever go on it again for my UC. My GI tried once...yeah that wasn't gonna happen. I'm too young to be on something that could potentionally be danbgerous.
I'm assuming you could keep it in your med arsenal until it stops being effective. Its never good long term but I don't know what it would do if you were using a couple times a year for a short period of time just to get into remission? There are other meds to chose from, just keep that in mind while you're deciding what to do :)
Sam(antha)
20 year old college student diagnosed in March 2005
Remission since January/April 2006-->THREE YEARS!!!!!
Trying Colazal 3 750mg x2-->Found it to be better than Asacol
25mg Elavil
75mg Effexor XR for GAD

"If you don't like something, change it. If you can't change it, change your attitude."
Maya Angelou"


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 7/3/2009 3:45 PM (GMT -6)   

I have been on Pred constantly on varying doses (apart from a 2 week gap) since the end of Dec 08, and I'm ready to come off it. I have tried coming off it twice but my symptoms return, so I'm now classed as steroid dependant and am now trying to take 6MP in order to get off it.

The side effects are potentially not very nice (the short term effects for me have not been fun!) but it does vary from person to person, and at the end of the day it is the only drug that actually gives me a bit of a break and helps me to feel better for a while. Only prob is obviously trying to come off it. The only thing that worries me about this drug are the long term effects, but again that does vary from person to person and as long as you aren't on it for too long it shouldn't be an issue :)


22 year old female, from the UK. Diagnosed with Ulcerative Proctitis Jan '08. Hospitalised Jan '09 for 3 days IV Hydrocortisone - had no effect! Hospitalised Feb '09 for 7 days (5 days - IV Hydrocortisone)
  
Currently taking daily: 
20mg Prednisolone tablets, 100mg Azathioprine (started taking 11th May),1g Acetarsol suppository, Asacol suppository (alternating nights)1g Mesalazine granules x 2 
Motilium (anti sickness), 1.5mg Zopiclone (taken when needed for sleeping), 10mg Citalopram (anti-anxiety), Probiotic Multivitamins, Nutren Build up drinks. 
                             
                             


momhatesuc
Regular Member


Date Joined Sep 2006
Total Posts : 78
   Posted 7/3/2009 7:01 PM (GMT -6)   
I've been living with UC for 10 years and I have been on pred 4 times for about 4-6 months each time.  For me it is a necessary evil to kick things back into remission.

Leslie, 31~ UC diagnosed in 1999
3 lialda x day
remicade
multi-vitamin, calcium, fish oil


Supa
Veteran Member


Date Joined Jul 2008
Total Posts : 748
   Posted 7/3/2009 7:35 PM (GMT -6)   
I have only been on it once. It worked, but it didn't work as well as Humira has been working for me. I was fortunate in that immediately after my first major flare, I was gotten into a Humira trial, and things have been going really well so far. Of course, I do wonder about the potential side effects of the Humira that they just don't know yet (like how pred was once seen as a miracle drug), but one step at a time.

I hope to never have to go on pred again. I would definitely be looking into other medical options-IDK all of them, but there is Immuran, remicade, 6mp, Humira might be an option (it isn't approved yet, but some have been able to get it-and they might be trials going on near you).

My GI never mentioned pred and didn't put me on it. My original GI was talking about Immuran, and then I got into this bad flare as I was switching GI docs. The docs at the hospital got me on the pred, and then the new GI kept me on it because it was standard operating procedure for the Humira trial and they had a set schedule for tapering, assuming the Humira was working. To be honest, I would push for discussions about different med options before resigning myself to another round of pred.
Laura
 
34 years old, stay at home mom of 2 girls, ages almost 4 and 2.5
 
Diagnosed in 2007
Currently on:
Asacol 6pills/day
Biweekly injections for Humira clinical trial-going well so far!!
Off of canasa because of severe joint pain (side effect)


Butterfly Kisses
Regular Member


Date Joined Aug 2008
Total Posts : 32
   Posted 7/3/2009 7:50 PM (GMT -6)   
I've had UC for 6 years now and I've been on pred 3 times but 2 of the times it was only for 3 days to help kick start me into feeling better faster while flaring. The last time was about a year ago exactly now and it was for a month and I requested to be put on it so I could have some relief from the urgency of having to go the the bathroom all the time so I could go camping. It worked, so good that I was afraid to come off of it but I couldn't stay on it any longer with the side effects. I ballooned up from water weight which became painful when my feet, legs and stomach would swell, I've never been pregnant but I imagine that's how it felt since I had to waddle like a pregnant lady too. tongue My doctor has NEVER been a fan of me being on pred, he avoids it at all cost and refuses to keep me on it for very long. He is very aware of all the damaging side effects and does not want me to have to go through that. I have also taken Entocort which is another steroid but with way less side effects especially in the long run. I've been on Entocort about 4 times I think and it has put me into remission every time and then I ween off of it when I'm in remission. This last time when I got off of the pred I started to slip back into going D more often so my doctor put me on pred and entocort. Since Entocort takes about a month to get into your system he had me on pred at the same time (only for a few weeks) to keep me from flaring any worse while the Entocort took it's time to kick in. I have not had any side effects from the Entocort, at least nothing too noticeable. Definitely NOT like the side effects of prednisone. There isn't a set number of times that you can go on and off of pred before you have to resort to surgery. There are a bunch of different meds out there to try before you should resort to surgery. My doctor is the kind to do surgery only after we've tried everything else first. Having surgery doesn't really change much because you will still go to the bathroom a lot and it's not a cure because the disease can just come back in a new area of your intestines. You should definitely do your research on all the meds out there and definitely ask your doctor tons of questions if you have them. Often people are too afraid to ask questions or make suggestions. I am constantly researching meds and asking questions and making suggestions and often my doctor will take my suggestions and we try new meds. I have a great doctor though, some people don't get so lucky to have great doctors. Your doctor may tell you that Entocort is only for Crohn's but that is not true, it is marketed for crohn's and has been tested on crohn's patients yes but it also works for UC...I'm living proof. I recently had a friend ask her doctor about it and his reply was "it's for crohn's" which is BS b/c if it works for UC why not try it??

Have you tried Imuran or Remicade or any of the other meds out there yet? Or any of the other 5 ASA's?
~Was diagnosed with Ulcerative Colitis in 2002.
 
Currently taking Colazal, Imuran and I am on Remicade.


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 7/3/2009 8:27 PM (GMT -6)   
I was just diagnosed in January, and eventually resorted to using pred to get out of the flare. I was only on it from mid-March to the end of April.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


Apetro
Regular Member


Date Joined Aug 2008
Total Posts : 95
   Posted 7/3/2009 10:12 PM (GMT -6)   
The end of this month will be one year on pred I hope to be off it eventually. I haven't yet to experience any types of side effects from it really, I take 40mg in the morning (since I started flaring).
http://asilentocean.blogspot.com/  -> My blog
 
Diagnosed 7/27/08
 
Asacol- 2.4g/day
 
Prednisone 20mg/day 40mg/day  20mg/day and tapering again....


LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 7/4/2009 9:25 AM (GMT -6)   

Wow, so it seems like this disease is SO totally different for everyone and every doctor has different ways of treating it.

Butterfly, I haven't asked much about other meds yet...but I will ask about Enotocort maybe. Also, I thought all the 5 ASA's were the same, just released differently. I did read something about a once a day 5-ASA called Apriso. Anyone used this one?

I guess it's just a matter of how long I can wait this flare out before I want to take pred. So frustrating. All I want is to be like I was a year ago, sitting here eating a large pizza with a cold can of beer, only worrying about who's going to win the game :)

Thanks everyone..once again.


Chuck - 28 yrs and counting
 
Diagnosed w/ UC Dec 08 - pancolitis
 -----------------------------------
Pentasa 500mg 2pills-4x daily
Prednisone 50mg Calicium + Vit D
Multivitamin, vitamin C, probiotics, fish oil
 
"If you can solve your problem, then what is the need of worrying? If you cannot solve it, then what is the use of worrying?"


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4227
   Posted 7/4/2009 10:32 AM (GMT -6)   
Hi Chuck. I have never taken pred. Luckily, my severe flare was treatable with Asacol and Rowasa. It tok patience but it worked for me. I'm glad my doctor tried that before just giving me pred right away. Have you tried rectal meds? They really help me.
25 years old; diagnosed March 2007;
Currently: persistent rectal inflammation
Asacol, 4 tabs, 3xday; Rowasa nightly; Viactiv; Metamucil wafers; multivitamin; Primadophilus Reuteri; sublingual allergy drops; Ortho Tri-Cyclen

Post Edited (Sara14) : 7/4/2009 10:44:57 AM (GMT-6)


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 7/4/2009 11:42 AM (GMT -6)   
I was on Prednisone once for three months. I've had three flares. All three went into remission with probiotics and/or change of diet.
Joy - 47 yrs and counting; Colitis Dec 06 (also have IBS); Currently in remission

Figuring out how to reduce a flare or get into remission is a trial and error experience. Don't expect your GI to have all the answers. He was trained in making diagnoses, prescribing medications, and surgically removing the colon. He was not trained in alternative treatments. That's why they are called alternative treatments.

Lexapro (for stress), Probiotics and Vitamins, Anti-inflammatory foods, No pro-inflammatory foods when flaring, No HFCS, No foods high in fructose, No artificial sweeteners -- Fecal transplantation worked, Prednisone stopped working, Colazal stopped working, Asacol stopped working


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 7/4/2009 12:36 PM (GMT -6)   
I have taken at least 30 courses of prednisone over the past 24 years, for periods from one to six months at a time. I got plenty of side effects, but no permanent effects (bone density, organs all test fine).

So it doesn't have to hurt you.

I didn't like to take it, but sometimes it was necessary when my suffering from UC was way worse than presnisone side effects.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 7/4/2009 2:00 PM (GMT -6)   
Pushingforward, I just started Apriso this week. I switched from Asacol because I was having a lot of problems remembering to take my noon dose, and because I was seeing capsules in my stool and could tell that most of the medicine was still in them. Apriso starts dissolving at a lower pH than Asacol, and there is some evidence that suggests people with UC have a lower gut pH than normal.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 7/4/2009 2:50 PM (GMT -6)   
Prednisone ages the body. The more times on it, the higher the dosage, and the longer the duration, the greater the effect of prednisone on connective tissue. Even if bone density tests show no substantial bone loss, that doesn't mean that prednisone hasn't aged the body. There are many forms of connective tissue other than bone.
Joy - 47 yrs and counting; Colitis Dec 06 (also have IBS); Currently in remission

Figuring out how to reduce a flare or get into remission is a trial and error experience. Don't expect your GI to have all the answers. He was trained in making diagnoses, prescribing medications, and surgically removing the colon. He was not trained in alternative treatments. That's why they are called alternative treatments.

Lexapro (for stress), Probiotics and Vitamins, Anti-inflammatory foods, No pro-inflammatory foods when flaring, No HFCS, No foods high in fructose, No artificial sweeteners -- Fecal transplantation worked, Prednisone stopped working, Colazal stopped working, Asacol stopped working


LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 7/4/2009 8:16 PM (GMT -6)   
Sara14 said...
 Have you tried rectal meds? They really help me.

I have never tried Rectal meds. I just kinda figured since it was pancolitis that they wouldn't help much. It's worth asking my doctor about. I have wrote myself a note to ask him again.
Thanks everyone...Pred definetely scares me, but it works.

Chuck - 28 yrs and counting
 
Diagnosed w/ UC Dec 08 - pancolitis
 -----------------------------------
Pentasa 500mg 2pills-4x daily
Prednisone 50mg Calicium + Vit D
Multivitamin, vitamin C, probiotics, fish oil
 
"If you can solve your problem, then what is the need of worrying? If you cannot solve it, then what is the use of worrying?"


megger
Regular Member


Date Joined Oct 2008
Total Posts : 62
   Posted 7/4/2009 8:36 PM (GMT -6)   
Ask for a blood test to check your ESR. Your ESR tells you the level of inflmation in your body. my GI will not put me on pred unless my ESR level is over 30.
Meghan - 24 years old
 
DX:  Pancolitis since October 2008
Current Treament:  Asacol (3 pills 3 times daily), Pentasa Enemas every 3rd night
Natural Treatment: Daily Multi-Vitamins, Activia Yogurt, Chamomile Tea
Previous Treatment:  Prednisone (40 mg - 5 week taper), Entocort Enemas, Buscopan
Status:  Remission I think!!! YAY!!! And now trying to get pregnant!!!


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 7/4/2009 8:52 PM (GMT -6)   
Definitely try rectal meds. I have pancolitis as well, but I really think the mesalamine enema helps me.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


princessb
Regular Member


Date Joined Jan 2009
Total Posts : 24
   Posted 7/5/2009 10:15 PM (GMT -6)   
I have had UC for 3 years and been off and on pred frequently, the last time in April. It works well for me but the side effects are concerning and problematic.  I was on pred for about a year and a half at varying doses before we finally went to Remicade and since trying Remi and subsequently going off it, I've been on pred once for a small flare and was able to taper off pretty fast. 
 
The rectal meds do work wonders for people, so it might be worth it to try them.  I use those as soon as I start to see blood and it gets things under control pretty fast.
Ulcerative Colitis, Hyperthyroidism
Lialda 2.4 Gm, Methimazole 5 mg, Atenolol 25 mg
In remission after almost 3 years :)

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