I'm another Newbie

[Huntsman]

I have been ill my whole life. Bad kidneys, CFS, Fibro, SLE, seizure disorder, gallbladder removal, total hysterectomy. Now they say most of the intestinal problems are from Severe Crohns in large intestine, Colitis in small intestine as well as an anurysim in the small intestine, severe inflammation. I have had a colonoscopy and that stupid camera pill. The gastro dr has me on 40mg of Prednisone daily and it stinks. In some ways I am feeling better but it is making me feel worse in other ways. Does anyone have any suggestions for other medications you have had success with?

 

[Trysha]

Hello Huntsman Welcome to the forum.
Sorry you are haveing a bad time right now but it will get better once a drug regimen is worked out for you.
Sorry I cannot help in this regard but there will be others along who can give helpful opinions.
It is a bit surprising that your only drug is prednisone though.
Feel better soon
Hugs and best wishes
Trysha

 

[Huntsman]

Thanks. The only other med he put me on was Flagyl and it really didn't help. I have been on Roxanol for the pain and muscle relaxers but can't stay on those for long periods of time either. I am looking forward to some advice.

 

[liv]

Dear Huntsman, boy do I agree with you that Prednisone causes more bad than good! One thing my doctor did when he found out I was having serious side effects was quickly taper me down to 20mg. He says that the side effects almost always become manageable at that mark and I'd have to agree with him!
However if you do taper down your Prednisone you'll probably have to substitute with something else. There are a whole bunch to choose from so it's definitely worth it to have a talk with you GI. As well definitely look into vitamins and minerals since us Crohnies don't absorb nutrients properly.
I know how hard it can be when you just keep getting illness after illness, but I truly believe we aren't given anything more than we can handle. Wishing you all the best and hope you continue to be your strong self and that this all works out and you feel better soon!

 

[Huntsman]

Thanks for the encouragement. My symptoms have gotten bad today. I go back to the GI on Aug 24 and will ask him for something to go along with the Pred. I hope you start improving as well.

 

[David]

Hi Huntsman and welcome

Wow, I'm sorry to hear of how ill you've been You poor thing

The first thing I thought of as I read of everything you wrote was low dose naltrexone. You may want to read up on it.

I wish you all the best!

 

[Huntsman]

Thanks . I will look into that medication today! I hope everyone had a great day.

 

[Huntsman]

My doctor is so frustrating. I went to him and tried to discuss all the problems I'm having with Prednisone. He said he was prescribing the cheapest possible medication possible since I'm on disability. Fine however you forget that when you call me into your office every two weeks, to ask me the same questions that you could call me with, you charge me $40.00. Now my dr ofc bill is almost $500! I took myself off the Pred. Can't do it anymore.

 

[David]

I'm sorry.

What dose of prednisone did you take yourself off of? A proper taper is EXTREMELY important.

What are you going to take instead?

 

[Huntsman]

I started at 50mg and tapered to 40mg before all my symptoms came back. I can't stay on that high of a dose long term. I'm going to ask my primary if he will let me try Humira.