Prednisone taper

[Daunting]

Hi All.

Today I did another 2.5mg decrease, I know it is a small decrease, but if I go 5mg whoof it hits me like a brick.
Today I am finally at 3.5 pills or 17.5mg, and noticed that I am having more frequent Bm's and Tummy gurglings. A little worried since I am at work.

Can I already be having a return of symptoms so quick if the decrease was just this morning, 5 hours ago. I was thinking it would be over a period of a day or so but not right away.??

 

[guest78]

That does sound like a quite a quick reaction, but it could be possible.
could it be something you have eaten?
i discovered i was lactose intolerant.
it could also be IBS symptoms rather than IBD? Stress or worry could also cause them.xxx

 

[Daunting]

Thank you

Definetly had more frequent BM's than usual and some pain to go along with them. Feels like needles going through my intestines with oncoming sweats. I know I did have a chicken salad yesterday, but usually i am find with that but maybe not this time. I am recording everything. My next apt with the dr is on Tuesday next week. Guess will need to wait and see.
I am sure if it was not for the prednisone in my system, I would of had more frequent BM's than what I already have had.

Here's hoping tomorrow is better, if not wondering if I should go back to 20mg or tough it out. Too Many decisions, my doctor is only available Tuesdays.

 

[guest78]

Hey!
Yeh that is so annoying, I can only see my dr on Fridays so I know how you feel!
Do you have an IBD nurse that you can talk to?
I wouldn't play around with meds on your own until you've spoken to your Dr.
It does sound like symptoms returning though :/
It's so tough.
Good luck over the weekend!
And I hope it gets sorted on Tuesday!
XXXX

 

[Johnnysmom]

My son had a period of adjustment at times while tapering Prednisone. I know one day he came home from school and said he had a toilet full of blood and I was so worried that we were not going to be able to continue to taper. I called his GI nurse and she said to continue with the taper and let her know if he had any other symptoms. She told us his body was probably adjusting. Over the two months he tapered he at times had loose stools (constipation is his normal), blood, headaches, nausea, and was very tired. This would last a few days and then go away. He tapered successfully and on time and has been in remission with no steroids for over a year. It took probably 4 months for him to feel really good after stopping the prednisone. He definitely felt much better on Pred than before he was diagnosed but the healing and adjustment took time.

I hope it is the same for you. Hang in there.

 

[Daunting]

Thank you for both your feedbacks :ghug:

Yes I too hope that tomorrow will be a better day too. The Bm's have stopped but I am still experiencing some pain. I will most likely not increase the dosage on my own unless I experience a very bad day, because I too am afraid of prednisone and wish I wouldn't be on it in the first place. Sorta disappointed about all of this coming back, we were hoping to go onto entocort next and now I have a feeling that he will not want to do so.

Sigh, Somedays I wish there was s cure for all of us.

 

[Daunting]

The weekend wasn't too bad. Just a little bit of pain. So maybe it was just a adjustment period as you spoke of. Will mention that to my Doctor tomorrow.

Does anyone else find midol helps with tummy cramps.

 

[rollinstone]

Hi, are you on any other meds while tapering? Maybe im tapering off 7 months pred (it's been a long road) in on 7.5 ATM tapered down from 10 last week, I'll be on 5's in two weeks, then 2.5s then nothing, so far I Havnt had any crohns symptoms return but that being said iv been on pentasa now for about 12 weeks and azathioprine for 2 months. I didn't feel the pred to be too effective for me as I had blood pretty much every day until I started imuran which evidently was about the 8th week of pentasa.

 

[Daunting]

Hi,

No I have not been put on anything else as of yet. In 2010 I have was put on Pentasa which caused the diarrhea to get worse, than I was put on Salofalk for over a year, which did not do any apparent good. I have no idea what are his plans thus far. I know I am not bad enough for remicade as he said, so I think we just need to find equal grounds with the lesser drugs. So I am at a lost.
But I will say I am glad that you are doing good, he also thinks mine might related to IBS as well, my intestines are very very hypersensitive.

 

[rollinstone]

I see, sorry you're having so much trouble, maybe it's time to start Aza or 6mp? They're known as "steroid sparing drugs" as they allow one to maintain remission while coming off steroids. As for
Ibs symptoms, I know amitriptyline is supposed to be great with that, I hope your GI sorts out a plan for you soon, remember of you are unhappy with your current treatment it's always best to change to a more pro active doctor

 

[Daunting]

Hi.

To be honest this is my 3rd doctor, my last doctor wsa not pro-active at all, he would not prescribe me anything except salofalk as he said the others would not help.
This doctor has been the best so far, he put me on Entocort last fall which helped, but than after stopping it all hell broke lose and he tried entocort again but it was not strong enough at that time, so we switched to 40mg of Prednisone and have been tapering since. So honestly not sure what he has planned for me, I was really hoping that things would improve by now. I have tried going gluten free for 8 weeks and didnt really notice a difference, actually I felt more tired than anything.

My apt with him is tonight, so looking forward to another round of I dont know or we'll see(s)

 

[Daunting]

Hi All.

Had my apt with the doctor last night and he wants me to try to continue with the prednisone taper at .5 decrease per week. He believes the tiredness is coming from the adrenal withdrawal and would like to see me off of the steroids as fast as i can. So if diarrhea comes back I will be using lomotil for a bit until I get lower, My next apt will be at the beginning of May unless I feel really bad than I can go see him sooner. He is good for that. He is now hoping to try me on Entocort, I know it is a steroid as well, but with less side effects. I was on it before and it did okay, but this time around I needed something stronger, so he is hoping he can put me back on entocort. He said that he has a few patients that he has mainted remission with entocort for a period of years without any significant complications or side effects, and only uses prednisone when absolultely necessary. He is still unsure if it is crohns or microscopic colitis, but did say that both are treated the same with the same medications and will continue to follow up. Just there is no signigicant damage or findings to eliminate one or the other, Low B12's are leaning towards Crohns but others without inflammatory problems sometimes get B12 deficiencies as well so we cannot eliminate that possibility as well.

Just starting to feel like part of the furniture when I go to see him. But I know I am not the only one.

Am I the only one that feels like crying sometimes.