Started on prednisone

[MulkeyJ]

Ok, I'm so incredibly miserable right now. I started on some low dose prednisone on my own this morning, some I had left over from the last try. I have enough for 13 days and one refill. I'll contact my regular doc this week and see when I can get in. I've got to get some relief. I'm doubled over in pain, still the big D.

I'll let you all know what happens. But I have just got to get this D stopped. Somehow.

I'll sure be glad when Entocort's patent runs out in May.

[mia]

Hi MulkeyJ. Sure hope this works for you. It seems to have been effective for people here so I'm sure it'll help you too. You need a reprieve, then you'll feel better and will be able to deal with this without such a feeling of desperation; when you feel like that it gets hard to even think straight- at least that's how I get.
So hope you feel a whole lot better very soon!
Mia

[JLH]

I sure hope it helps. Sorry you are having such a bad time.

[ant]

Dear MulkeyJ.

I have been reading your posts. Hang in there....you are in my prayers, best wishes, ant

[Memory]

I am so sorry MulkeyJ...I totally understand how you feel, I can totally related ... actually today is the first day I have felt half way decent in weeks, I know it sure takes alot of out 'ya .... sure sucks...

I am keeping you in my prayers and sending good thoughts your way !!
Memory

[Gabes-Apg]

when i was having chronic D just prior to tests and diagnosis, i remember a day when i was spending all day in the bathroom i was in tears and i remember saying out loud in tears "just rip it all out", not having a bowel has to be easier than this.

Post diagnosis, and getting reasonable control on the MC via the advice of the wonderful people on this site and hearing Tex's medical history, I take that statement back. not having a bowel is not easier. Getting control of the MC monkey is a major accomplishment.


the D will slow down and stop, it takes time. Take a deep breathe, release the stress of the past month and embrace the path going forward.

not sure that this will make you feel better, but it may help mia and some of the others contemplating diet management. Anytime i am tempted by a food item that has gluten or dairy or yeast in it, the thought of the awful days of sitting on the toilet or being in the hospital on IV to get re-hydrated come to mind and the memory of chronic D days is enough to make me not want that food item.

[Joefnh]

MulkeyJ I am glad that you are able to take this medication. Certainly we understand how frustrating this can be and at times things seem absolutely hopeless. Hang in there it will get better with diet some medication and time.

One note of caution on the prednisone, while I am not a doctor I do know that this is a medication that once you have taken it even for short period of time, you really should taper down off it slowly. I know you have it on hand and it will probably help, but I would still get together with your PCP or GI doctor and discuss what you are doing. I'm sure they will agree that this is a good stop gap measure and will be able to properly support you on your dosing schedule.

Hang in there I think most of us have been where you are at, it will take perseverance and some patience but it will improve. Stick with the diet and work with your doctors.

Take Care & Best Wishes

--Joe

[barbaranoela]

MULKEY---please DO consult with your DR. about re-taking the predisone---this is one drug that just cant be popped and stopped whenever U want to----

I know when I was on Prednizone---it was a very slow process in lowering dosages and I had to go by GI's instructions--in lowering etc.

Tis not a pleasant drug but it certainly did it job---speaking for myself---as we are all different---

Can feel your misery-been there many a time--


Barbara

[Gloria]

I've been reading your posts and have felt a lot of sympathy/empathy. I hope the Prednisone gives you relief from the D long enough for your diet changes to begin to take effect.

I'm keeping my that you will respond to the Prednisone and will buy you some time to determine your intolerances.

Gloria

[Ginny]

MulkeyJ, you do need some relief and what Barbara has said is true about tapering off Prednisone, so do contact your doc. Gabes statement:

"just rip it all out",

has probably been shared by many of us and I still think sometimes that would be the answer when I have a flare, but you keep on trying and you follow a strict diet including lowering your fiber intake to very little and then make sure it is well cooked. It is an individual process of finding our way to being "functional". BUT you have this great family to share your struggles and your joys.............remember that! Ginny

[tex]

I hate to bring this up, but "low-dose" is not the way that Prednisone should be used, and I would be surprised if it does you much good, that way. How much are you taking?

A typical treatment regimen with Prednisone begins with a substantial dose, (usually at least 30 to 40 mg, or more), and the dose is then promptly tapered, thereafter. The idea is to quickly build up an adequate working supply in the body, and then allow it to slowly fade away, in order to allow the adrenals to resume their normal operation, in as smooth a fashion as possible. Taking a regular, (fixed), daily dose, is where people get into difficulties with side effects, because the adrenals quickly develop a dependency.

You really, really need the advice of your doctor, when taking Prednisone, because the corticosteroids have special requirements.

Tex

[barbaranoela]

Tex is right on the button with that pred.
I started with 30mgs a day and when ready to taper down it was
25 mgs a week
20
17 teen
12
10
5 --yup thats how I had to taper off that stuff===plus I had to talk a walk EVERY day to keep the *adrenals* awake~~~~~

Now when I was in the hospital the PRED. was intravenously run thru me--with another drug =after getting out I went down 30 20 10 pill wise!!

Take care==Barbara

[grannyh]

Definitely talk to your doctor! Even under a doctor's care ..he managed to over dose me on prednisone for back problem.. ended up in hospital they thought I was having heart attack.

The only up side of the over dose.. was I didn't have D for three months but I wouldn't suggest that route to anyone!
grannyh

[MaggieRedwings]

MulkeyJ,

I am going to very much agree with Joe, Tex and Barbara, etc. that you definitely should consult with your doctor before doing the Pred. It is a nasty drug. For me, the drugs just didn't do it but I know my sister was on Pred for a long time before she died and I never felt it did a thing for her. Had a horrible time getting off of it.

Maggie

[MulkeyJ]

I have a doctors appointment tomorrow. I started on the 10 mg. dose of Prednisone I had on hand. I've taken Prednisone for years off and on due to the Lupus, so will be very careful with it. I've had two bm's since I started the Pred, and the second one was near normal. I'm still doing the GF, DF, but did take in some soy in a GF, DF dinner, but so far it hasn't seemed to bother me too much, but will continue to watch the soy also. I've taken it for four days now. The very first day, the D and the rumbling quit. The second day, nothing. The third day, near norman, today almost norman. So we'll see what the doc says tomorrow. losing 16 lbs in a month isn't fun and it's not at all good for you either. Hopefully by tomorrow I will have gained some of that back.

Thank you all for your concern and your patience with me :) I'll let you know what the doc says tomorrow.