I would love some advice very overwhelmed

[tots]

Ok- I have had infusion number 5- moved up to 7.5. I am on week for of a 4 week course of Prednisone. I am on no other meds other than "support" meds. Just the stuff that treats the symptoms.

So evidenlty just because you ask Starbucks for soymilk dosent mean you will
get your Vanilla/Mocha latte with soy milk.


Within a few hours I was doubled over in such pain I had a hard time making it back to the stock room at work. Took a pain pill and a Bentyl. So my question is this.....


What the heck do I do now? Is my idea of remission out of line- symptom free
even if I have something like milk? It has been a very long year and I am very very tired of this. I am also very overwhelmed and pretty much at a loss!


Lauren

 

[Jennifer]

It sounds like more a matter of finding what works for you or its possible that things may be just too far out of control. Is it a small section or are we talking a huge portion? I believe we've talked about Entocort a couple of times before and how you're dealing with issues further down in the colon (I'm not suggesting it again, just trying to remember your story more clearly). I'm not sure if its a section that can be removed so you can actually give Remicade a chance to work or if you need to switch to something else (my GI mentioned Cimzia to me if the Remicade doesn't work but I'm not sure if you've taken that or not). Hopefully the increase in Remicade will help.

As for the milk, you may just be lactose intolerant. I'm lactose intolerant and for me when I drink it, it feels like I swallowed broken glass. Its a very sharp and debilitating pain. Even while in remission its still possible to have issues with trigger foods but nowhere near as bad during a flare and sometimes not at all. Yet if its an intolerance or an allergy, there's no way to avoid those symptoms.

 

[tots]

So Crabby-

Last Friday I moved down to 10 mg of prednisone a day. For the last 4 days I have
had MAJOR cramping and diarrhea again- which is the exact same pattern as the
last three times I was on prednisone. I just got a promotion at work and I really
want this to work out! Pain and cramping etc.... do not work into my plan!!

My "gut" tells me I need to be on something in addition to Remicade but, it needs to be started while I am on the prednisone. So it all can kick in at the right time. This was one of my biggest fears of trying the prednisone.

I think I am getting very worn down just from the pain and the diarrhea. I am also going to ask my family Dr to test my blood work for all thise vit, David is alsways warnigng us about!

Lauren

 

[Jennifer]

Ya that is a common problem when coming off Prednisone. Usually around the 10mg mark is when people start seeing symptoms return. Has your GI suggested any specific meds yet you could try while on Remicade? Absolutely have your vitamin levels tested. They can cause so many problems when they're low and adding diarrhea on top of inflammation will likely make them lower but pain and diarrhea can definitely run you down for sure. Your body is working hard to get better as well. Yay! for the promotion! Good for you! I hope it works out too!

 

[tots]

I need to call my dr today. Let him know about the trouble
I am having with the lower dose.


Cracked a back molar last night oh so want to go back to bed
and pretend all is well for just a little while!!

I work retail and as you can imagine its going to be a very
long week next week who has time to have a tooth pulled??


Ugh!!

Lauren