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Prednisone - deal or dud for me?

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Posted 12/10/2008 7:30 PM (GMT 0)
I would like some suggestions, comments and some support. The following:

I am taking Prednisone for the first time in my life for a bad flare. I started at 40 mg and took that dose for 9 days and then lowered the dosage in 5 mg incrediments weekly. Inbetween I have been in a 10 mg-15 mg limbo due to worsening. Anyway, I am down to 5 mg a day and I really can't tell a difference in symptoms whether I take 5 mg or 25 mg. I still have 4 to 10 BMs a day, sometimes with blood, sometimes without, the stool is almost always formed (although it looks like pellets or is ribbon-style - sorry for being graphic), I still have pain and nausea.

After taking Pred for a total of almost 10 weeks now, I just want to stop. Shouldn't I be much better at this stage? Why continuing it and adding more damage to my body when I don't see any real improvements?

I would like to know your opinion about it, because like I said, I took it for the first time in my life and I don't know ... but I expected so much more from the "miracle drug" since I always fought hard NOT to take it.

I would like to know how long you have been taking Prednisone, how and how fast your symptoms have improved/disappeared and when/if the symptoms came back after stopping Prednisone?

I would just like to know if Prednisone is a deal or a dud for me or if I have high expectations.

And by the way, I was put on 6-MP 10 days ago, but I will make a separate posting about that.

Thank you in advance for your advice and input!

Scarlett

Posted 12/10/2008 7:43 PM (GMT 0)

Hi Scarlet,

     It doesn't seem like prednisone is working for you.  My last flare started in early April.  My doctor put me on 30 mgm of prednisone and Rowasa enemas.  I was already taking Colazal and 6MP.  I've been on 6MP for about five years now, but still get a flare once a year.  Instead of improving I got worse.  I was hospitalized for ten days in early May, still sick as a dog when discharged.  The doctor took me off the 6MP when I was admitted to the hospital because my pancreatic enzyme levels were off the wall.  By the end of my hospitalization my enzyme levels had returned to normal.  When I had my first visit with my GI doctor after my hospitalization, he put me back on the 6MP along with the prednisone.  It seemed as though my condition would worsen when the prednisone was tapered down to 5mgm.

     In September (still flaring), my doctor decided to try me at 40 mgm of prednisone with a weekly taper of 10 mgm and then 5 mgm for the last week.  This finally did the trick.  I have been in remission since Nov 1st.

     Are you taking any probiotics?  I believe they help too.  I take powerdolphilus by Country Life.  You can purchase it over the net.  There are many other fine probiotics out there.  Hope I could be of some help.

Posted 12/10/2008 7:53 PM (GMT 0)
Hi Scarlet-
So funny you are posting this because I was going to post on this too. I have been on prednisone for 6 weeks- started on 40 mg for two weeks and then starting tapering. At the same time, I began 6mp. Now I am down to 20mg and feeling horribly. So badly that I have severe anemia ( just got the call from the doc). He told me to go back up to 30 mg and wait for 6mp to kick in.

You may have to go back up to 30 or 40 mg until the 6mp starts working??? Definitely tell your doctor about this.

ALso, have you considered Remicade? Some doctors give this along with 6mp--- i am going on my 12 infusion. Don't think it has helped at all but I have never taken it with 6mp so I am hoping that it will work.


I just talked to mine and he brought up surgery again and let me tell you I am not happy.

I wish you the best and keep us informed
Posted 12/10/2008 7:54 PM (GMT 0)
     My doctor told me it takes about three months for the 6MP to "kick in" along with the prednisone.
Posted 12/10/2008 7:54 PM (GMT 0)
Christine1946,

Thank you for your reply! You have been through a lot, geesh! I just started taking 6-MP 10 days ago and I have high hopes that it will do the trick for me. My doc has already pre-authorized Remicade just in case, but in my head I am not that far to even think about going down the Remicade road yet .. .

Yes, I do take a probiotic and it is called ALIGN. My doc gave me a sample package to try it out and I stuck to it. Since I am still in a flare I can't tell whether the probiotic is doing its work or not and if I am not mistaken, I take it now since 6 or 7 weeks. There are so many probiotics out there, so I just chose the one I could get a sample from.

And with the Prednisone ... my doc wants me off, too. I want off, too - of course. I am just not sure whether I am not patient enough, but I just thought that 9 weeks should have done it actually. I will talk to my doctor on Friday anyway, let's see what she has to say.

Christine, I wish you a super long remission!!!
Posted 12/10/2008 8:00 PM (GMT 0)
Jackie,

Remicade has become a topic, yes. I already got the okay from the health insurance, but here is my thing: I don't think I am miserable enough to take Remicade yet. Yes, I am still in a flare and miserable, but compared to before, I am better. So if I already take Remicade without really "needing it" as in being super-miserable, what comes after Remicade ...? Do you know what I mean?

I will talk to my doctor on Friday. I know she wants me on Remicade, but after 11 1/2 more or less mild to moderate UC, it is all so overwhelming to first have to take Prednisone and obviously seeing it fail, to 6-MP and throwing a hissy fit about it and now thinking about Remicade ...? I must admit, I am totally overwhelmed!

Thanks and all the best for you!
Posted 12/10/2008 8:10 PM (GMT 0)
Scarlett,

     I gave my doctor a hard time about starting the 6MP five years ago and finally relented.  Two years ago, while flaring, he started bending my ear about Remicade.  Do you know that doctors get kick backs from the drug companies...Remicade gives them big perks.  I know this not only because I saw it on TV but our neighbor happens to have her doctorate in pharmacology and works for the company that manufactures Remicade.  Yep...those drug companies wine and dine the doctors...cruises included.  Now, mind you, I realize that my doctor is trying to help me and Remicade has helped many people but I tested positive for the TB virus and know for a fact that taking Remicade could bump me off.  He said there are ways to treat me beforehand, but his associate who treated me in the hospital said "no way" should I be on Remicade.

     Sometimes I wonder why I even take the 6MP since it hasn't kept me out of flares.

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