Update on V, case in point for silent disease progression

[CarolinAlaska]

What a disappointment, I'm sure. I hope they can find a reason that is easy to fix. I'm sorry to hear it.

 

[Sascot]

Sorry to hear your bad news. Hope they manage to find something good to treat her with asap.

 

[Dexky]

I missed a lot of V's story over the last year but I remember her only symptom being extreme fatigue some time back. Is the TI and LLQ pain new for her? Are they going to move up the date for the pillcam or do scopes? Good luck!!

 

[Farmwife]

Sorry to hear the update.

HUGS

 

[imaboveitall]

Thanks guys. :ghug:
If antibodies, d/c regardless of thera range.
If no antibodies and NOT in thera range, UP dose.
If no antibodies and IN thera range, d/c OR UP MTX dose.
If d/c, then IV steroid blast.

Pain is indeed new, Dexky. She's had mostly silent disease, not even labs show it other than lactoferrin.
Last labs in Feb were all normal, LF was too until now.

I cannot stress enough how insidious this disease can be.
She eats/excretes normally. Even meds that upset people's stomachs do not bother her.
She catches NO illnesses, all here had bad flu this winter. She had nary a sniffle, though on three immunosuppressants.
To look at her she looks like a big overgrown ox.

This disease is the weirdest.

 

[Clash]

Second the "weirdest disease"!!

Our scope showed narrowing at ICV, MRE looked good, biopsies good, FC levels only 300 and no antibodies....still had a 9 day stint in hospital overall. Blech!

We discuss results and plan next Monday, with these decent results I'm assuming treatment may include unicorn magic or dragon scales...hey might as well throw in our kitchen sink as well...just to cover all our bases!!

Hugs...this disease is insidious and mind warping!

 

[Jmrogers4]

Sorry V is not doing as well as hoped. Totally agree everything can look so normal on the outside but WWIII is happening on the inside.
I like the dragon scales idea clash

 

[Tesscorm]

I'm glad you have plans in place... know it won't really be a relief until you start to see some improvement but, at least, you have the next steps ready to go.

Given the recent LF results, are there any plans to do any imaging testing? I think the plan was to do imaging six months after starting remicade??? but, given these results, any thoughts on seeing where the inflammation is located. (Then again, not sure that really makes a difference in the treatment anyway...:ybatty

Lots of hugs... :ghug:

 

[Crohn's Mom]

Definitely the weirdest !

Gab got her hair done the other day, and I was just staring at her and told her she looked healthier that day than I had seen her in months.. She responded with something like, hmmm that's funny, cause I feel terrible !

Hope you get some solid answers soon ~ hang in there ! :hug:

 

[kimmidwife]

Sorry to hear, this disease really does stink! Hope you find something that works for her! I like Clashs idea of dragon scales!

 

[imaboveitall]

Clash, wow. 9 days in hosp?? God.

No imaging plans yet, awaiting the damned labs, stool went in on Fri, draw for HACA and thera range was last Tues so a week ago.
Next infusion is supposed to be Apr 9 but now who knows.
F/u Apr 16 but he and I in constant touch meanwhile by email.

I have a theory (MLP? what do you think?) that whatever is wrong with her immune system, was made WORSE by introducing Remicade.
Just like with cancer pts where the cells mutate further after chemo and become even more aggressive, perhaps the introduction of a strong immunosuppressant caused a mutative change and the cells that are overactive are now in an even more overactive state due to adapting to the environmental change.

 

[xmdmom]

I just read

I have a theory (MLP? what do you think?) that whatever is wrong with her immune system, was made WORSE by introducing Remicade.
Just like with cancer pts where the cells mutate further after chemo and become even more aggressive, perhaps the introduction of a strong immunosuppressant caused a mutative change and the cells that are overactive are now in an even more overactive state due to adapting to the environmental change.
__________________

I think that Remicade's effects on the immune system are transient -- that's why people sometimes have recurrence of their symptoms prior to their next dose, because it's wearing out. I do not think it causes mutations (at least not in the short term.) That's not to say that it didn't throw off the balance of something but I don't think it would be a permanent situation. ((((HUGS)))) Hoping things will be looking up soon!

 

[QueenGothel]

I am so sorry this wretched disease is no longer silent for V. Totally sucks that The combo is making things worse or they don't know yet. Regardless it is crap that they can't figure it out. So frustrating, I have been there. I can't remember but did she ever try the LDN? Just throwing out ideas bc I am frustrated for you as well. :ymad: Grrrr!

 

[DustyKat]

Oh man Julie...:ghug::ghug::ghug:

I am so, so sorry to hear about V, , and I hope, wish and pray more than anything that you find the answers you need, and soon.

Hating this silent, insidious disease right along with you hun...:voodoo:

In my thoughts, always. :heart:

Dusty. xxx

 

[izzi'smom]

Just dropping by to say I'm thinking of you...and hoping against hope that things improve for V. (((HUGS))).
Hated getting our HACA back...Remi was such a difficult decision to go ahead with and to find out it couldn't work for us...:heart:

 

[imaboveitall]

Hey all :ghug:
I don't often come here anymore but when something happens with old V I think may help others, I feel I should post it!

She got very bad the past month; as bad as she was at diagnosis minus the starvation (credit to formula). Fever, early satiety, so weak she could not sit up, dizzy with any position change, tube looked bloody when she pulled it each morning, labs crappy (for her), pale, dark circles, and more I am sure.
Into hospital, IV steroids X 3 days and MRI AND MRE.

Why I am posting:
MRI AND MRE WERE TOTALLY NORMAL.
The Saint said: they will show bowel wall thickening, abscess, fistula and/or serosal changes but NOT NECESSARILY mucosal inflammation. He said she was obviously very sick and the neg scans did NOT MEAN there was a normal bowel! He was looking for abscess due to fever.

She was discharged yesterday on 60mg pred and 150mg Imuran plus her other drugs.
Today she is MUCH BETTER and is going to go to the fair tomorrow night with her BF.
The point herein that may benefit others:
clear scans may not mean there is no inflammation present.

 

[DustyKat]

Oh man Julie, your poor girl. :ghug: And so heartbreaking for you. :hug:

So good to hear she is starting to feel better and I hope The Saint is able to find what he is looking for and knock that bugger on the head! :voodoo:

Sending loads of love, well wishes and healing thoughts your way. :heart:

Dusty. xxx

 

[kimmidwife]

sorry to hear she has been so sick and in the hospital.Glad she is feeling a little better. Hope she is able to have a great time at the fair with her BF!

 

[crohnsinct]

I am speechless! Glad she is going to the fair but just so sad to hear all that poor girl is going through.

As always thanks for taking the time to keep us posted...just praying for the day those posts are awesome great news.

 

[Sascot]

Glad she is feeling a bit better. Sorry to hear she hasn't been too well - hope that is her turned the corner to feeling a bit better.

 

[Crohn's Mom]

Glad she's feeling better now

I agree - we know from Gabs experience pre- first surgery that the scans don't always pick up all they should

Hope she continues to get better - thanks for the update!

 

[ChampsMom]

Thanks so much for posting! Sorry to hear V had to go through this - hopefully this will put her back on an easier path!

 

[imaboveitall]

Many thanks everyone :ghug:

Dusty, didn't your girl have clear scans right before she needed surgery?
Crohnsmom, did the clear scans in Gab's case confuse the docs?
I had two residents (it is a teaching hosp) act all amazed at the clear scans (granted, first year residents) and one of them and I were going down the misdiagnosis path together...:eek2:
Anyone else with clear imaging but a sick bowel?

 

[my little penguin]

Here- DS has clear scans - he likes to think outside the box

 

[DustyKat]

Hey Julie,

Sorry for the late reply. :redface:

Yes, Sarah's CT, one week before surgery, was grossly normal and in view of the disaster they found when they opened her up they were at a loss as to why it was so.

Dusty. xxx

 

[Niks]

Sorry to hear she's been so poorly I really hope that she enjoyed the fair. Everyone deserves some fun :ghug:

I really wish my daughter's Doctors thought the same way. Because she has had a 'normal' MRE, they think that it is all fine! :ymad: