HealingWell
Search Close Search
☰

People who know alot about Prednisone

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/9/2012 2:13 AM (GMT 0)
I am so confused and angry, and curious & a bit sad about this whole prednisone thing. My GI promised me I'd never be on it again bc of malabsorption issues, bad side effects and IV steroids only being effective at 60mg(nothing less).

  Well, my mom called the GI & the nurse talked to me for awhile about what's up & she talked to me about the viruses, ulcers, horriable pin coming back & she gave me a few options & a glimpse on my future:

1) Either go on pred or go straight to UAB(where my GI is)

2)I told her I've been taking a lot of lortabs lately & I hate taking medicine. She said my Gastro, since he is a pediatric one, can't get me any stronger meds & if it gets worse I need to not tough it out & go straight to the ER & get IV pain meds like morphine then go to UAB.

3) She said since my pain isn't controlled my GI is contemplating admitting me anyway

4) If I get worse after this taper then I my have to use Imuran? with my Humira.

Anyways, I got put on 10mg & my absorption issues are better so no more weight loss or gain. Since I'm actually absorbing it now & feeling the effects...I UNDERSTAND THE LOVE HATE RELATIONSHIP! It makes me slightly depressed, moody, joints hurting more than usual etc. but it also gives me alot of energy, a lot less stomach pain.

Anyways, I have a question(s) I forgot to ask:

1) With this low of a dose, will my eyesight get more damaged? I'm already in bifocals at 15 yo.

2) What other long term side affects could I get?

3) Why would I relapse just a few weeks after stopping the prednisone?

4) My GI said my body can't go long periods of time without the Prednisone since I was at 60 in October  finished Valentines day. Why can't my body take it & why did I relapse if I tapered properly?

Post Edited (keepingfaith) : 3/8/2012 7:16:22 PM (GMT-7)

Posted 3/9/2012 2:42 AM (GMT 0)
Honey I am sorry I am of no help. All this is new to me and I am trying so hard to learn about this horrible disease.
I just wanted to let you know I am thinking and praying for you. I am sending lots of hugs your way. I am here if you ever need to talk.
Posted 3/9/2012 3:03 AM (GMT 0)
Thank you! The treatments, pain management, knowing which medicines to take at what time etc. are all new to me too! I'll keep you in my prayers! I pray for all Crohnies & their families constantly!
Posted 3/9/2012 3:16 AM (GMT 0)
I noticed you were on Amitriptyline at one time. Did you ever have any trouble with this medicine. Kota was on it and they told us to take him off of it today. When he had to be taken to the hospital.

I am sorry you are in so much pain.

Posted 3/9/2012 3:19 AM (GMT 0)
I'm sorry, I cannot really help either. But it's not feasible to stay on steroids long term, so your doctors had better come up with a plan to wean you off them. Don't panic; no major harm will be done in a few weeks. You have to be on steroids for a pretty long time for the major complications - osteoporosis, diabetes, glaucoma - to appear; a matter of years for some of them, I think...

Steroids get people into remission, but usually not for very long - it's the role of the maintenance drug to maintain the remission long-term. Some folks do have a better response than others; it sounds like you don't have that great a response to steroids, which is a bit like me. I respond to the highest doses, but it wears off as I taper down.

Anyway, I send you my best wishes and hope that you get better soon :-/
Posted 3/9/2012 4:44 AM (GMT 0)
@Littlebitsmommy: The same thing happened to me! My GI told me I ould increase the dose one week(I didn't want to bc I hate taking pills) then about a month later he told me to quit taking it. I didn't know what it really did so I just quit taking it like he said then I got HORRIABLE headaches and some other weird stuff. My Rhuematologist said he didn't know why my GI took me off of it. My GI originally had me on it for stomach pain & to increase my appetite. It turns out Amitriptyline prevents headaches! So, my Rhuematologists put me on a drug just like it called Noritiptyline & my headaches are gone! Both drugs are antidepressants used to treat migraines, bed wetting and all kinds of stuff my GI & Rhuematologist said. I've been having alot of issues getting sleep so I take 1 or 2 Noritriptyline & I'm out within an hour! I didn't have headaches that much before the Amitriptyline but I guess the Amitriptyline was the glue that held me together & when I quit taking it I got a lot of migraines & a few nuerological issues. I'm glad my Rhuematologist put me on the Noritriptyline since my GI said no Amitriptyline for some reason!


@NCOT: I know! The Humira is working some but the steroids are getting in the way of my ideal treatment: Asacol, vitamins, Humira. My GI keeps saying he's thinking about adding Imuran instead of having me do my Humira every week(I do it every other week). I'd rather him just let me do the Humira more often so I can get off the steroids all together but he's more of a conservative guy when it comes to meds. My Rhuemie wants me to add 6mp though..Too many deciscions..Hopefully ones I won't have to make! My dental surgeon doesn't want to operate till I'm either off steroids or in great health(wisdom teeth). My GI wants to admitt me to get my meds regulated but last time that happened I was 4 hours from home, on the cancer floor, in the hospital, for 3 weeks. So that's not going to happen till I'm desperate. Thank you :)
Posted 3/9/2012 3:53 PM (GMT 0)
According to my Orthopedic Dr. Prednisone/steroids caused my Avascular Necrosis. I already had one surgery on my left knee and will have to have the same surgery in the right. If the surgeries are not successful and my bones collapse, I will have to have bilateral knee replacements. I took Prednisone on two or three occasions at my highest dose of 40 mg then I tapered down to zero. I am now disabled after a career as a Paramedic for nearly 20 years.

Most drugs have side effects so you have to weigh the benefit vs. the risks. Personally, if I would have known that I could have possibly been disabled from that drug, I would have refused, especially since I didn't get much benefit from it anyway.

As for your vision, my father was on 5 mg Prednisone and got cataracts in both eyes and his Dr.'s told him that it was from the Prednisone.

Sorry not to be positive about Prednisone but my experience with this drug has brought nothing but pain and the loss of my life as I know it so if I can warn others of the possibility that it could happen to them, I will.

Take care!
Posted 3/10/2012 12:51 AM (GMT 0)
I'm sorry you are going through this at such a young age. I was 18 when I was diagnosed, I am now 49. When I was diagnosed prednisone was the only drug out there that helped me. I have been on it more than off for all these years. I do not have cataracts, but I do have severe adrenal suppression. Everyone is different, but I truly believe that as long as you have bone density scans done, and see an ompthemologist once every couple of years your GI will take care of the rest. For me I decided a long time ago that I will take the prednisone because it truly helped me regardless of the side effects that i may or may not get. I cross the bridges as I come to them. I hope the Humira works for you. Have you been on Remicade?

Take care,
Julia
Posted 3/10/2012 1:23 AM (GMT 0)
Thank you!
@Pmedic: I want to hear the good, bad & the ugly! It's better to know the ugly than be totally uneducated!
@Juilia: I was on remicade & after 2 treatments I got Drug Induced Lupus & my nuerological issues went to a new level of bad so no more Remicade for me!
Posted 3/10/2012 2:10 AM (GMT 0)
Tdawg: My GI, everytime I see him, asks "What mg are you on? Girl you got to get off that stuff! All you do is get the crappy side effects & no benefis!" I tell him I agree everytime. I was doing good for a few weeks but I guess the Crohn's had to show its self. My GI wants me to stay on them for maybe two more weeks. He wants me off ASAP & in the hospital! I said NOPE! I have smester exams in a few months & even with the school helping me a lot on makeup work, I can't take a break from school. I'm a perfectionist. My parents are happy with a 'C' average but I refuse to have less than a 3.5 GPA because of this crud! Yes, I'm young & 'stupid'. I told my parents I'll agree for him to admitt me all Summer if he wants but not till my semester exams over.
I get ALL the bad side effects to & no benefit. I got told I looked like a anorexic from the neck down & a fatty in the face. Not to mention the mood swings....I almost cussed out a teacher saying words I didn't evem know I knew! That is NOT me at all! She just got on to m for talking & I got angry, stood up, threw my pencil and papers down, then said "You're piss...ticking me off!" but the teacher, luckily, was understanding. I am so ready to get off this junk & feel good! That
That dental/jaw surgery deal & multiple issues with your teeth sounds PAINFUL! Pain in the teeth is about level with Crohn's pain!

Hope you are feeling better & getting a lot of rest!
Posted 3/10/2012 3:56 PM (GMT 0)
I was on pred for one year and a half and I consider it to be the inevitable evil. Whenever I tried to get off it, I would flare. My dose was 40, 30, 20, and then 15 mg. Unfortunately, I developed hypertension (but this could be genetic, too). I don't think that being on 10 mg can let you get irreversible side effects but I would definitely encourage you to ask your doc to put you on a maintenance drug.
Hope you feel better soon:)
Posted 3/11/2012 5:49 AM (GMT 0)
about eyes and steroids...

My brief foray into prednisone use caused a sudden deterioration in my eyesight. I found that things looked blurry. I went to an eye doctor and he said I had "steroid-induced glaucoma." I had to go off the pred immediately and use eye drops to fight the glaucoma. Fortunately, it was successful - had I continued the pred, I would have gone blind. I have since read that 5% of the population cannot take steroids for this reason, so I happen to be among that unlucky minority. Or maybe lucky - I had great incentive to go cold turkey on the steroids, and I'm better off thanks to that.

As for cataracts, that's a more long-term issue, but certainly a concern. I have no personal experience with that though.
Posted 3/11/2012 7:54 AM (GMT 0)
So sorry for what you're going through at such a young age (((HUGS)))

The thing with pred is once it's out of your system symptoms will come back, it's considered a booster med until your maintenance meds kick in or as a bit of a break from IBD symptoms.

It's very unlikely that anyone with IBD would go into and stay in remission from pred alone, unless they were a very very mild case of IBD and even then it's questionable that it would keep you in remission once it's out of your system.

I hope you find relief soon.
Posted 3/11/2012 11:16 PM (GMT 0)
@OZONEHOLE- I'm so lucky bc I had very little eye issues then a few months ago I went to the optomologist & now I'm in bifocals! That was only after about two-three months. I'm counting my bleesings though that I don't have severe eye issues like you said. My colon has been very angry this weekend so I have no idea how I'd do if I weren't taking steroids. Either way, I want off!

@Pb4- Thank you! I knew doctors started you on a maintenance meds w/ steroids usually at diagnosis but wasn't 100% sure why but thanks for telling me! Hopefully my Humira shot next sunday will be the extra boost I need

@minnie- I'm on two maintance drugs & they aren't working apparently Hahahha. My doctors think I'm starting to develop antibodies to one of them & a possible allergy to the other. Hopefully none of that is true & the Humira will kick in. I can understand why you'd hate it! I've read almost every 1 of your posts about it steroids & it sounds almost as bad as the disease!! I hope the side effects go away fast or lessen quickly :/ Thank you!
✚ New Topic ✚ Reply