Flaring, woo-hoo

[paddywack]

Flare ups suck.

I'm halfway through my inflectra cycle, they checked my antibodies and medication level at my last infusion and they were fine.

And yet, here we are.

I might have triggered it by trying to be a productive member of society.
We painted the living room after years of talking about it. A friend helped, the whole family helped out.
But I way overdid it. I was incredibly wiped out.

But I went to work the next day. And had to leave early.

I had my first pool therapy appointment the next day and felt good for a day.
And then felt WAYYYYY worse on the 2nd day.
I canceled the 2nd appointment because diarrhea and pools don't mix.
I worked 90 minutes yesterday and then quit.

The fatigue, pain, and diarrhea suck. My bones hurt! What's up with that?

I've seen a rheumatologist in the past. He diagnosed me with fibromyalgia, twice. And his profile says that he wishes people knew that rheumatologists don't manage pain or fibromyalgia. All the RA tests were negative. I've heard of sero-negative arthritis, but I'm already on Inflectra.
Shouldn't that fix the SA, if I had it?

I had to run errands today, and I was so exhausted that I used the scooter cart thing at Target. There were several available, but I still felt stupid doing it.
But on the other hand, I didn't pass out in the store.

So, what am I doing? Trying to rest and drink lots of water.
Trying really hard not to take NSAIDs. I have an upper endoscopy in a month and my doc always points it out if he sees I've been taking them.

If it keeps up I guess I'll call the GI clinic.
But I hate the poop hat stool collection song and dance.

Maybe it will just go away

I picked up some bananas so I can make smoothies. Everything else is like eating shards of glass. Yay.

I hope everyone else is having a great Fall season!

 

[my little penguin]

Joint pain when your crohns is flaring is classic sero negative arthritis associated with crohns
Your gut flares and joint flare
You need a new rheumatologist

For perspective Ds was dx with juvenile arthritis associated with inflammatory bowel disease while taking humira for crohns

So yes you can be on a biologic for crohns and still get arthritis
Or psoriasis or ezcema etc….
In his case they increased humira dose and added methotrexate
But his arthritis can flare independently of his crohns
Gi tract can be beautiful and still have a arthritis flare and vice versus
Double the fun
https://www.jrheum.org/content/93/21
https://www.uptodate.com/contents/t...ociated-with-inflammatory-bowel-disease/print
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3496378/
https://spondylitis.org/about-spondylitis/overview-of-spondyloarthritis/enteropathic-arthritis/

 

[paddywack]

Joint pain when your crohns is flaring is classic sero negative arthritis associated with crohns
Your gut flares and joint flare
You need a new rheumatologist

For perspective Ds was dx with juvenile arthritis associated with inflammatory bowel disease while taking humira for crohns

So yes you can be on a biologic for crohns and still get arthritis
Or psoriasis or ezcema etc….
In his case they increased humira dose and added methotrexate
But his arthritis can flare independently of his crohns
Gi tract can be beautiful and still have a arthritis flare and vice versus
Double the fun

I'm really sorry your son deals with that.

I don't think the fibromyalgia was a bad dx, necessarily.
But I'm tired of doctors and medications.

I haven't been to the rheumatologist in a few years. The last time I was there I got a lecture about how fibromyalgia is real and I need to do Tai Chi.

There's a rheumatologist listed on spondyloarthritis.org who is local and in-network for me.
I'll look into it.
I've hit my max out of pocket so it would be nice if they could get me in this year still.


Also, thank you for sharing your experience and helping others so much! There are a few on this forum who are great at it and I appreciate your time and effort.

 

[my little penguin]

How are you doing ??
Any better ?
@paddywack

 

[paddywack]

How are you doing ??
Any better ?

I am feeling better, thank you.
Although things went from rapid fire to not moving at all, so I'm taking miralax to try and get some balance the two extremes.

And my joints still hurt. I have my regular infusion next week. Hopefully that helps.

 

[paddywack]

I send you a big hug and will pray for you.
Everyday is complicated when a person has an inflammatory bowel disease.

I know the restroom door code at my local grocery store ! One day the cashier was ringing up my groceries and all of a sudden I had the strong urgency to have a bowel movement. I actually ran to the grocery store restroom while the cashier was still ringing up my groceries .

That sucks, I'm sorry.
A few years ago the need hit while I was having my hair colored.

The diarrhea has eased, but my labs showed my hemoglobin is under 12 and my iron stores are low. Which isn't great when you're a woman with a uterus.

I'm so tired. I have an upper GI procedure tomorrow, I'll ask the doc about an iron infusion before they drug me up.

 

[paddywack]

My hemoglobin is under 12 right now and my doctors are not concerned. Back in 2009 it was around 5, so I went to the Hospital for a transfusion.
Take Care

I asked the doc about my iron levels before they knocked out Thursday. He ordered iron studies and they grabbed the labs before I left.

My hemoglobin is 11.3, not terrible.
But my iron saturation is 8.
My ferritin is 9.
Both flagged low on the report.

I'm waiting to hear from the clinic about scheduling an iron infusion. Hopefully they can get me in next week.

My hair has gotten really long, but it's been falling out. So I went a little crazy and cut about 8" off. Myself.

It's just hair, it will grow back.
My nails have been cracking and breaking, too. Boo.

Plus epic fatigue, abdominal pain, all that great stuff.

 

[paddywack]

The clinic called today. I have 5 iron infusions scheduled over the next 2 weeks. In the past it was always just two.
So maybe they're splitting doses in hopes that the body has a better chance to absorb it?

If I had to pay for 5 separate infusions I would not be pleased, but I hit my maximum out of pocket months ago.

While talking to the nurse, I mentioned the symptoms I've had over the last week.
Abdominal pain around the navel, definitely worse after eating. Pain is lasting all day, it just ramps up and down. It got to a 6 a couple of times.
Loose stools but only once or twice per day.

I fully expected the poop hat and stool collection kit, but the doc ordered a CT scan.
The nurse mentioned that the doctor suggested prednisone if there's active inflammation found. But it's the weekend, so the earliest I'll hear back is Monday, as far as scheduling goes.

I should be grateful it's not an emergency. I am grateful. But also, I hate prednisone. I still haven't lost the weight from the last time I was on it.

It's not that bad, but I'm tired, everything I eat causes pain, and I'm grouchier than usual. And my usual is pretty grouchy.

I ate dry cheerios for lunch and even THAT made the beast angry.