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D

Hi Guys, Hi Jan, Hi everyone,

I've not been online for a long while. Because i've been doing pretty well!

The pouchitis that troubled me for a long while turned out to be Crohns! Am I allowed to swear? You don't have to say 'I told you so'. I knew the risks. Sadly, my pernicious decline was presumed to be associated with struggles with iron absorption. Including me, nobody thought to ask - what's the underlying cause here....Crohns! So, here's 1.5 years in a nutshell:

Humira - 4 months. Some improvements. Bad side-effects. Stopped that. Poor nursing care. Change consultants. Great team. Azathioprine test. Intolerance to that. Bureaucracy for 2 months. Remicade. Whoop Whoop - I feel superhuman. 6 months in, lessening effects. 14 months in, calamity of sidies (Now). Post infusion depression and mood-swings. Now: inflammatory arthritis in my knee - OUCH! This pain is going to make me swear....Ok. I promise not to. But f*&%$%£ this hurts more that anything, and you know what i'm talking about in pain terms.

Clearly i'm coming off that $&*%. Its obvs. a reaction and the effectiveness of Remi is wearing off big-time. The nurses have suggested ENTYVIO® (vedolizumab). I'm seeing my consultant on Friday. Assuming I can get to his office.

I can feel myself spiralling quite fast. My energy and moral has dropped like a lead balloon. Iron levels are heading south. I have BAD pain in my knee, my appetite is gone. my guts are starting to hurt again. My brain is going to fuzz-town, my family are miserable at the prospect of another round of hoop jumping tests to get the new drug prescribed.

The only place I know to turn to is you guys. This pain sucks. Immobility is not part of the recipe I can entertain. Experiences, advice, wisdom, and love all welcomed right now.

Dan

ps. I like what you've done with the place!

 

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deweyjdeweyjMember

Interesting that Humira yielded unacceptable side effects but Remicade worked well for a while. Entyvio is thought to be largely gut released, so in theory should yield potentially less side effects. that said, I have seen reported the usual occasional side effects from patients who are colon carriers. I will observe with interest your success with Entyvio. Hopefully it works well for you.

Curious did they ever biopsy Crohns tissue? where did they find it?

Technically I now also carry a Crohn's dx and about ten years ago finally started Remicade, after two years moved on to Humira. but lately with a recent lingering bout of ishemic pouchitis we are considering switching to Stelara. We will probably decide at next scope in 4 weeks.

also we have never actually biopsied Crohns tissue, so its more of a clinical declaration.

 

deweyj
Jan DollarJan DollarModerator, RN, retired

Well gee, that really sucks, Dan! My advice? You probably won't like it, but you probably are best off moving on to the next drug recommended.

While I have not been bothered with side effects, I have dealt with dwindling effectiveness. I am on my fourth biologic. However, I never have to jump through approval hoops to change meds. I just have a discussion with my rheumy and the new drug is approved. The only "hoop" I have is to fail the current one. They all cost about the same, so it puzzles me why the insurance companies are pig-headed about it.

Jan

Jan Dollar

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