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Since being diagnosed, how many times have been on steroid courses?How much is dangerous?

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Ulcerative Colitis
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Posted 10/4/2008 10:22 AM (GMT 0)
Hey guys,

Its me again!I had a difficult time trying to eat breakfast this morning in order to take my first steroid dose, so i've managed one toast so far!Can't do anymore without being sick, so i won't push it, best to keep that down.

I've been reading through the side effects of this drug, and honestly im scared to death!Ive taken it 7 times before this is my 8th course in 5 years. All the side effects both physical and mental are realy worrying me... How many more times can i go without any permanent damage?I already suffer from severe joint pain, what else am i going to damage in order to get well for a few months!Is it worth it!Is there any alternative apart from surgery!

My GI has tried to put me on the IMURAN but that also scares me, as my aunts and cousins have a history of cancer. So i'm avoiding it for now. I'm also worried it won't work then i'll know there are no other options!

Ok, im kind of diverting from the intial subject, and that was steroids, i wanted to know how many times you've been on a course since you've been diagnosed? Mines is always 40mg tapered within a month. And what side effects have you experienced both long-term and short term!?How many times is seriously DANGEROUS?

Thanks guys...

Posted 10/4/2008 12:42 PM (GMT 0)
Hi Mia,

     First of all, let me explain that by reading your post I get the vibes that you are highly stressed out.  Try to calm down a bit.  I know that is easier said than done, but you are doing more harm than good.

     I was diagnosed with UC in 1998 at age 52.  At that time I was hospitalized for eight days, put on Prednisone and Asacol.  Weaned from the pred within a month, stayed on the Asacol.  Enjoyed a two year remission and UC struck again in 2000.  Another round of Pred for about two months (always starting with 40 mgm and tapering), remission until 2002.

     In 2002 the doctor thought the Asacol wasn't doing the job since my UC is located in the rectum, so he put me on Colazal, nine pills a day.  In 2003, another flare.  This time he put me on the 6MP, not happy about it, but if it would keep me in remission ok.  I had to take the 6MP along with the pred for about four months before the 6MP kicked in.  I have to go for blood tests every two months to make sure my WBC is ok and that my liver enzyme levels are normal.

     Update....I have suffered flares every year and they last approx two months, always have to go on the prednisone.  This last flare started in April, I was hospitalized for ten days in May and still unable to regain remission this time.  So, I am still on the prednisone, down to 30mgm from 40...again.  Seeing my GI doctor on Monday.  I am not a candidate for Remicade, read a LOT of bad things and heard a LOT of bad things about, although read that many on here have achieved remission on it.  I was exposed to the TB virus in the 60's, therefore not for me.

     As for the side effects of prednisone.....yes, I have osteoporosis and suffered a compressed fracture of the lumbar spine about four years ago when I fell.  Very painful but am fine now.  I do a lot of walking.  Try to stay fit.  I have insomnia but take ambien cr for that.  I also have high blood pressure and it really was out of control in the hospital, too bad no doctor had the brains to place me on water pills along with my BP meds while I was in there because I called my heart doctor this time and he immediately placed me on water pills while on pred and my BP is normal.

     I am feeling so much better the past few days, but I am sure it is due to the prednisone.  Just hope and pray I can wean off successfully this time.  Sure, I am concerned but it beats bleeding all over the bathroom floor, which did  happen.

Posted 10/4/2008 12:59 PM (GMT 0)
Thanks Christine,
I am a little stressed!I guess reality is hitting me in the face a little, not sure if i can maintain remission and carrying on with these drugs forever seems impossible. I flare severly practicaly every year, I guess im just feeling low, about my health, my career prospects as although my potential to do so well is there, its very limted with this condition!Also family planning; i don't when to start and cease the moment before its too late, or im too unwell!If i have children will they get this curse god forbid!? Lots of thoughts running through my head. I've moved in with my husband not long ago and although hes been with me before i was diagnosed, i guess this is the only time he has got to realy see how things are and can get... I feel guilty that he has to put up with it all, support me etc.....
Ahhhhhhhhhhhhhhh!Sorry i'm just waffling...
Posted 10/4/2008 1:10 PM (GMT 0)
Sorry you are feeling poorly.

I have had uc for only three years, but have flaring symptoms for nearly all of those three years.
I have never been on steroids. My doctor doesn't like them. He says that for me they would only give me temporary relief and my uc would come back when I came off them. I am sure my GI is no expert, but I just wanted to share his advice with you because maybe you are realizing that the steriods are just giving short periods of relief, but have not helped you acheive real remission. Perhaps it would be a good time to discuss new treatment alternatives with your doc that do not include steroids and see how it goes.

Also please keep on trying to eat regularly. The less you eat the harder it is get well.
Posted 10/4/2008 1:46 PM (GMT 0)

Thanks for the advice... After this course i will definately start looking into other avenues.

I am trying to eat in small amounts, im just worried about over doing it and vomitting what i've taken in. My GI wanted me to stay in hospital and put on a drip as this has been going on for three days. So this weekend is a trial period to see how i get on with the med's and food before anything else needs to be done.

Posted 10/4/2008 3:24 PM (GMT 0)
awww Mia (((((((((((big hug))))))))))))

Your doctor prescribes shorter courses of steroids than my doctor,if that helps. Is it the steroids making you nauseous? I know I am suppose to take them in the morning, but I can't eat enough to make them not bother me. I take them at lunch right before a big meal. Ok, its not a huge meal, lol, a bowl of soup and maybe some applesauce or something like that. But it has turned into my big meal of the day. Anyway that helped me.
Posted 10/4/2008 3:49 PM (GMT 0)
Awww thank you sunshine!!!!
I was actually experiencing nausea before i went to see my GI and being prescribed the steroids. I just think im flaring quite bad, when i have cramps and bowel movements i feel breathless and asthough everything in my stomach is being pushed upwards!
I read somewhere its best to take the steroids in the morning, as that when our bodies naturaly produce our natural anti inflamatories..
So far i've managed some tea, 1 toast for breakfastand for lunch i've made plain rice which i couldn't finish. The bland food is getting to me, so is the pain i guess so one out weighs the other!!

Oh and thank you all for your replies...
Posted 10/4/2008 3:53 PM (GMT 0)
I do know exactly what you are talking about. This is how I feel too. My flare started with a bloated stomach. Sometimes it gets so much it hurts my chest and ribs.

Since being on steroids (4 weeks) I have lost 12 lbs. UUGGGH it bugs me to always have this nagging feeling. And when I eat the pain gets worse.
Posted 10/4/2008 4:36 PM (GMT 0)
As Christine's experience shows, any amount of prednisone carries risks; it is very effective, but it's not a benign drug. Just to cite one example, when I was on it and reading a lot about it, I saw a couple of studies suggesting that the largest amount of bone loss due to prednisone use actually happens within the first couple of weeks of taking it. At this point you've had eight months of it, and that's a lot of prednisone. At the same point in my illness, I decided that I would have surgery before I would ever take prednisone again.

During that time I heard someone say: risk is a product of likelihood times seriousness. So, for example, if a drug has a 50% likelihood of giving you a small painless rash on your lower back, that's not a very big risk; high likelihood, but the rash is small and painless, so who cares? Imuran has a very small likelihood of giving you a couple of very serious side effects (although some studies show that even that likelihood is no higher than the likelihood of those effects in the UC population not treated with Imuran).

Prednisone, on the other hand, has a very high likelihood of giving you both some minor side effects (like sleeplessness) and a relatively high likelihood of giving you very serious side effects (like diabetes, cataracts, and bone loss and bone death.) So it is a very risky drug.

To further put the risks of Imuran in perspective, you might think about asking your GI how many of his/her patients on it have ever had lymphoma or low-level skin cancers (those are the two associated with Imuran use). My GI, who has a caseload of about 1300 patients, has never seen a case of either, and knowing that really helped me go ahead with it.

Imuran worked really well for me; I ultimately had surgery for other reasons. Either way is a vast improvement over continuing to take prednisone. I would really encourage you to talk with your GI to get a more realistic view of the risks of the prednisone you've already been on vs. the Imuran.

Post Edited (Charlotte Gilman) : 10/4/2008 10:40:18 AM (GMT-6)

Posted 10/4/2008 4:52 PM (GMT 0)
You mention enemas in your signature Mia...any research or questions regarding that to your GI?

q
Posted 10/4/2008 5:44 PM (GMT 0)

Thanks for the reply Charlotte, it realy hit home, and your right i will ask my GI more questions...

As for the enemas i tried them last year, well i suggested to my GI that i wanted to try them, they were a bit messy and took a bit to get the hang of. But i did respond well to them, my only problem was i stopped them too early so the bowel trips and consistency were still not good!But i was happy there was no blood. I stayed like that for about 4 months, and naturaly went into complete remission!But this was short lived i think due to alot of stress. So 3 months later here am, with a severe flare, thats left my dehydrated and weak, and vomitting alot. So my GI suggested something stronger this time round.

Next time i get ANY symptoms i ill not treat them as a blip, i'l get on to them straight away and the enema is an option! 

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