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Cimzia Newbie !

Crohn's Mom

Crohn's Mom

Moderator
So today was the day Gab started Cimzia !

I was so nervous about it, and she was so excited. I can understand her excitement; it's a hopeful window into a new, healthy life !
I just didn't want to have to give her the injections; I always feel like I'm the one who has to play (bad guy).
Well, she completely surprised me and the nurse....She did it on her own the first time! WOW ! The nurse helped her to guide the first one in and make sure she was doing it correctly. Then she did the second one all on her own with no problems.

For those of you that don't know, Cimzia is taken once a month, with 2 injections. Gab chose to do them in her stomach (which also surprised us!) instead of the thigh; but you can do them either way, or one in each. It is the patients choice.

Today was her first dose of the "loading doses". She takes the 2nd round in two weeks, and the 3rd two weeks after that, then once a month.
So far there are no ill side affects and she feels just fine except she is quite tired now so she is napping for a bit.
Oh, and she said the injection didn't hurt a bit ! We warmed the syringes to room temperature for around 10 mins before administering. And, she didn't use a cold pack or anything on her injection site before hand.

I thought I would start this under a new thread for the parents of children who may be considering taking this, or are taking this. Maybe we can help each other !
I know I probably should have posted under the "treatments" thread, but I also know most of the parents come here for their advice and support.

I suggested to Gab that she keep a daily journal for a while of any side effects, feelings, symptoms, etc. So that possibly she can help others who are considering Cimzia since it is so new to Crohn's ( I believe it's only been 2 years since it's been started for treatment of Crohn's)

Anyhow, It's a great day so far here at our home ! Fingers crossed that this will be her wonder drug and she can begin a normal healthy teenage life ! :hug::hug:


p.s. I had no idea which "icon" to use for this thread :lol: I hate the word "drugs" but it seemed about as fitting as I could find in the choices :lol:
 
W

Welsh-bird

Fab news T. Am so pleased that it went well for Gabs. Hoping that it bring's years free of pain and disease. She sure deserves it!!
Love n hugs, And xx
 
DustyKat

DustyKat

Super Moderator
Oh T, excellent news and BRAVO to Gabs! I bet you never cease to be amazed by the fab things your girl can do, and believe you me hun, it won't end any time soon either! :banana::banana::banana:

I am hoping and praying more than anything T that this is the break Gabs so justly deserves...

:goodluck::goodluck::goodluck:

Hey, is everything still on track for college? Hmmmm, sorry, probably the last thing you want to think about right now! :eek2:

As to the drug thing...get outta here T, it is a drug! and anyway, you've got better things to stew over! :ylol2:

Loads of love and hugs mate, :wub:
Dusty. xxxxxxxx
 
Dexky

Dexky

To save time...Ask Dusty!
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Kentucky
I don't know squat about Cimzia T! But I'll gladly follow Gab's journey with it! I hope it offers many years of boring updates:)!!
 
Crohn's Mom

Crohn's Mom

Moderator
I hope I am not jumping the gun here by telling this great news...but I am going to do it anyhow. That's the point of all this right , the ups and the downs so people have an expectation of what to possibly expect ??

Gab came in to my room around 11:30 last night before bed and says; "Mom, you might think I am crazy for saying this, but I want to tell you something."
I said OK?? then she says...." I don't know how to explain what I am feeling, or what is happening to me already. And is it even posssible?" I'm like, what ? what ? what is it??
she says...." Mom, I feel, ummmm....NORMAL !! I feel so good right now and I don't know how to explain it !!"

And the tear drops rolled and I didn't know what to say except smiles, and smiles, and tears of joy and I LOVE YOU !!

May it keep on keeping on !!
Is this really happening so fast ? Less than 24 hours after years of pain and agony ???
Oh how I hope so ! :)
 
Crohn's Mom

Crohn's Mom

Moderator
Ahh Dusty I was so excited to write the above that I forgot to answer you:)

Yes, everything is on track for College! We have paid deposits, and registered for Orientation in July.
I am so glad we just kept on going as if nothing was stopping her. I would be kicking myself pretty hard right about now if I put things on hold because of the "un known" !!:biggrin:
 
DustyKat

DustyKat

Super Moderator
:yoshijumpjoy::yoshijumpjoy::yoshijumpjoy::banana::banana::banana: Yee Haw T. To say this is fab to read is a bloody understatement!!! I am so, so, so, so, so, happy that I'm crying!!! I don't know one blessed thing about about Cimzia so I'm talking through my bum, but I reckon YES! it is possible!

Oh man T, and the whole college thing, well I am bursting with happiness. Your baby has been through so, so much and to read that she is FINALLY getting relief and the life back that she so justly deserves, it's almost hard to believe!

(sniff), (sniff), now where's that bloody tissue box...:lol:

:mademyday:...BIGTIME!

Dusty. :wub:
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
OK, that wasn't boring at all!! I'm so happy for Gabs and you too Tracy! Now we just got to get you and JJ straightened out!! Hopefully, less stress over Gab's health will be just the medicine you need! It's bound to help:)!
 
Crohn's Mom

Crohn's Mom

Moderator
Awe thanks everyone !
I am on cloud 9 and I plan on staying there all weekend! :ylol::ylol:

Gab left to go have dinner with her Nana and Papa tonight, and she said she may even stay over for the night with them !
I LOVE NORMAL !! :Karl:
 
DustyKat

DustyKat

Super Moderator
Oooooo, I love normal too! Maybe we can start a...The Normal Things My Kid Did Today...Club! :lol:

:mademyday: T!

Dusty. xxxxxxxx
 
Crohn's Mom

Crohn's Mom

Moderator
Day 3 of Cimzia and all is still positive!

I will say that Gab was extra tired the first two days; kind of in a bit of a fog off and on. She took some extra naps and it basically took care of it though.

Today when she got out of the shower we noticed that her skin is not as inflamed as usual. After coming off the prednisone she developed severe itching all over her body, and then a "rash" (we like to call it psoriasis...who knows tho! :ylol:)
Anyhow, the rash is definitely getting lighter, but more importantly the itching is getting less severe! She was taking up to 4 Benadryl a day, plus an Allegra 24 hour Allergy pill every day. She will continue the Allegra for a while, but yesterday she only took one Benadryl, and today none so far.

Her energy that she is displaying is nothing short of amazing to me! Even the dark circles, that became a permanent fixture under her eyes, are beginning to lessen!

Great news so far all around ~ We have nothing negative to say about Cimzia so far!
Yippeee !!!

I sure hope these little updates help somebody, some day, and they can ease a worried parents mind :rosette1:
 
AZMOM

AZMOM

Moderator
T - That's ALL good news. I'm so glad for Gab. Three cheers for Cimzia and even a couple thrown in for her Momma. :-D

:medal1:

Hugs,

J.
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
I hope everything's ok T!! You sounded down in your other thread:(

Please, anyone who sees this, please donate a brief post!! All we need is fifteen more so we won't have to look at those freaky^^^^^ dancing cats anymore!! Please!!
 
DustyKat

DustyKat

Super Moderator
Hahaha, sucked in Dex. Now, if you hadn't mentioned it then the cats may never have appeared again... but now I'm not so sure!

Dusty. :)
 
Crohn's Mom

Crohn's Mom

Moderator
Day 6 and all still seems to be going well.

Her energy has died down a bit today, even after sleeping around 12 hours last night.
Her eyes seem to be a bit darker today as well.
Also, she can't seem to get enough to eat ??
She has eaten 3 meals already today and still feels "hungry" and worn down she says.

Other than those few things, mostly all is still going great with her. Hopefully it sticks around! I'll be interested to see how she feels after the loading doses are done, and she's on a regular schedule.

The nurse did tell us that if we find doing both injections, once a month does not seem to "last", then we will have the option of doing 1 injection every two weeks instead. We have a while to go before we have to decide that yet.

I have no idea if these are a "Cimzia" thing or not, but I just want to put the little things in here for others' future reference.

Hope everyone's having a fantabulous day! I am trying to keep myself busy planning Gabrielle's graduation party for this Saturday ! I can't believe it's happening....my baby is graduating ! :ywow::ywow:
 
Crohn's Mom

Crohn's Mom

Moderator
this post is just for Dex to bump the creepy kitty's out! :rof::rof: (even though I think they're creepy...I like them!) :rof::rof:
 
DustyKat

DustyKat

Super Moderator
You seriously think numbers is going to stop me!

I hope the hunger and fatigue are just a passing phase hun, fingers, toes and everything else crossed mate!

Ooooo, I love a party! Frantically checking my letter box for my invitation, it hasn't arrived T! Oh well I didn't get one to Will and Kate's wedding either...boo! ahahahaha

Have a lovely evening hun....

Much love, :Karl:
Dusty. xxxxxxxx
 
DustyKat

DustyKat

Super Moderator
Oh yeah T,

I put a thank you post, in the remicade thread on this forum, to all you guys for putting down your thoughts and experiences about your kids on the biologics. I truly can't thank you all enough for taking the time and effort to do it.

Lots of love, :wub:
Dusty. xxxxxxxx
 
DustyKat

DustyKat

Super Moderator


Congratulations Gabs and well done!!! Have a fab day T and savour every lovely moment hun...

Loads and loads of love, hugs and good wishes,
Dusty. xxxxxxxx​

I know, I know......but it is Saturday here! :lol: Yikes, I hope the world doesn't end!
 
Crohn's Mom

Crohn's Mom

Moderator
That ^^^^^^^^^ is THE best post ever ! IMO :rof:

Thanks Dusty !

And hey...if you're in the area....pop on by the party you're more than welcome! Who needs royalty invites anyhow....:D:D
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
Don't encourage her T! She'll have all that bling on every post!! It's distracting!!

She has promised to e-mail me if the world ends today! I'll be sure to let you know!
 
Crohn's Mom

Crohn's Mom

Moderator
Well this is day number 9.

Gab has been extra fatigued the last two days but we are assuming it is because she has been very active lately in preparation for her graduation. We agreed yesterday that she probably needs to just go ahead and sleep Monday away :)

She has also developed a swollen lymph node in her neck that is painful.
I did post a separate thread questioning others on their opinions because it has made me quite nervous. I'm sure my first thoughts are a bit over-reactive, but the bottom line is that these biologics can possibly have some very serious side effects. In my opinion we can not be too cautious, and better safe than sorry!

I will be sure to update after I speak with her doctor about this :)
Hopefully it's just a slight response to her body fighting off a little infection coming on or something. Keep your fingers crossed please! :p

By the way...Her graduation party was a huge success! 45 people showed up and Gabrielle said that is was hands down THE BEST day of her life and she thanked me profusely ! :ylol:
 
AZMOM

AZMOM

Moderator
LOVE that the graduation party was great. JUST what you all needed. Yes I"m YELLING today. lol lol lol

Yay for Gabs!

J.
 
DustyKat

DustyKat

Super Moderator
Thinking about you T and hoping all goes well with the appointment today...:hug::hug::hug:

That is so fab about the grad party, well done Mum!!! I know it is more than thanks enough to see your baby so happy but how great is it that Gabs acknowledged all you have done so emphatically! YAY! Your a real sweetheart Gabs...:rosette2:

Much love, :Karl:
Dusty. xxxxxxxx
 
Crohn's Mom

Crohn's Mom

Moderator
Ay yi yi ...We all know how much fun the waiting on the return phone call is...:stinks:
This is one of the big down falls about her doctors being over an hour away...but hey, at least I don't have to fly to Syndey right! :D:D

Waiting....waiting...waiting....

Meanwhile I woke Gab up to see if she had any other things for me to report while I was at it, and thankfully she said no.
Well, she mentioned her sprained ankle LOL. She wore tall heels for her friend's graduation Friday night and twisted it. It still hurts like the first night she said, poor baby.
She also said Oscar woke her up at 3 a.m. being a very bad baby boy and made a mess all over everything! I'm so glad she has such a positive attitude about everything, because I think I would have a few choice words for Oscar and really tell him how it is ! :lol: My sweet girl certainly hasn't inherited her mother's sailor mouth! :rof:
 
Crohn's Mom

Crohn's Mom

Moderator
Would you believe they never returned my call today !
Oh of course .. we all believe it ! LOL
Argghhh...at least she already has an appointment tomorrow for her yearly physical so I will have her pediatric GP check it out.
Damn docs !
 
AZMOM

AZMOM

Moderator
Tracy -

AAAAAAAAAHHHHHHHHHHHHHHH!!!!!!!!!!!! I'm pissed on your behalf. As if you need my pissiness. ;-)

Love you - keep us posted -

J.
 
DustyKat

DustyKat

Super Moderator
BULLS***!!! That's sucks so bad T!!! :voodoo:

Good luck with the appointment today hun, everything crossed that all is okay with your baby...:hug::hug::hug:

Much love, :Karl:
Dusty. xxxxxxxx
 
Crohn's Mom

Crohn's Mom

Moderator
AAAHHHHH.....A little validation from the nurse never hurts :ybiggrin:

I was right, and the message was lost in translation some where. The GI's nurse from Mayo just finally called me back.

I told her I felt kind of stupid for calling her over one lymph node, but that is what my understanding was that she wanted us to do. She said do not feel stupid for one second and I did the right thing and they NEED TO KNOW these things so they can keep track.

Since Gab went to her pediatrician yesterday and he couldn't feel the node then she said she is willing to not make us come up there. She said we can go ahead and do the injections that are scheduled for this Friday, but we have to keep a very careful eye on the spot that hurts and any other new symptoms that may arise. If the node changes, gets bigger, more painful, etc..then she said we will probably have to stop the Cimzia. :(

So, I guess I wasn't over reacting after all, and it seems it may be more serious then I even thought it was.
Hopefully it's nothing and she can continue the Cimzia long enough to at least see what the full effect will be for her.
Here I go crossing my fingers and toes again! :)
 
DustyKat

DustyKat

Super Moderator
I'm right there with you T! I have everything crossed, eyes included, that the lymph node was just a rogue and it will now behave itself for the duration!

:goodluck: Gabs!!!

Thinking of you all, :hug::hug::hug:
Dusty. xxxxxxxx
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
T, I hope the node was just an unrelated anomaly! I know the Cimzia has given you and Gabs much to be hopeful for!
 
Crohn's Mom

Crohn's Mom

Moderator
I went to get Gab's injections out so they could sit at room temperature for a bit....
She informed me that it's not time because we have to wait for the friends to come over to watch! :ytongue:

LOL I just thought that was too cute not to share!

I'm nervous about doing them ourselves; and she's inviting friends over and making me wait even longer ...hahah.:ylol2:
 
Crohn's Mom

Crohn's Mom

Moderator
Well it's been a little over 3 hours since the injections and Gab's starting to hit the wall of exhaustion :ywow:
I guess this will become the "norm" on injection day ?
Also, about a half hour after the injection she started to get some major stomach cramping all around, but it went away rather quickly ~ Thankfully !
It did scare us both a little though :blush:

I'm glad I asked her a few days a go not to make plans for this evening just in case.

She did the injections all on her own too! After the first one was taken out we realized that she didn't finish it, so she ended up having to stick herself again to finish it up. She's weird though and likes doing it so she thought it was quite cool that she got 3 sticks instead of 2! :biggrin: Only her ! LOL
 
DustyKat

DustyKat

Super Moderator
And I whine over a flu shot!!
Click to expand...
OMG I don't believe it! I thought you were a knight in shining armour, my world has come crashing down Dex!

Oh well done Gabs! :medal1: I hope things have settled T and Gab is feeling better when she awakes...:hug:

Dusty. :wub:
 
Crohn's Mom

Crohn's Mom

Moderator
It's starting to look like we have a pattern with the injections already.
A few hours after injections comes pure exhaustion.
The next morning she is literally bouncing off the walls with energy !
Then by the evening she hits the wall again.
At least this time she is listening to her body and is relaxing and reading.
(actually, I don't think her body is giving her a choice!)

The only new thing we have noticed this time is some pretty bad bone pain...down to the bones in her fingers hurting. Poor baby :(
I gave her some T3 and a Flexeril in hopes that it calms for her tonight.
I don't know if it's the Cimzia or not, but to me it must be because all this pain wasn't there before hand, just mild.

Other than that...it's smooth sailing :)
 
DustyKat

DustyKat

Super Moderator
Oh T, I hope all settles down for your baby and the bone pain is just a passing glitch. Gabs never ceases to amaze me hun, what a wonderful young lady and role model she is!

Loads of love and hugs...:hug:
Dusty. xxxxxxxx
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
Are these problems listed as possible side effects? As long as it doesn't get progressively worse, I could imagine Gabs being willing to give up a little productive time to keep her Crohns at bay. Hang in there Mom and Gabs!
 
Crohn's Mom

Crohn's Mom

Moderator
Yes, Dex I believe the fatigue is a possible side affect of the Cimzia, and I have read other stories on the adult thread of just about everyone who takes it gets it for the first day or two. So, yes I think Gab is more than willing to put up with that aspect.
The bone pain is better this morning. She's still determined to go get her hair done and play some tennis today thinking the exercise will help...so...onward and upward girlie! :)

I'm not freaking out here...but there is another lymph node this morning she said she woke up with. It is at the base of her hairline on her neck. The other spot isn't hurting as much now, so I am just going to watch and wait with this one as well and thinking it will just disappear as well. :D There are a ton of different reasons why a lymph node can swell and she could have just picked up a little virus recently. After all, she has been around so many people and busy busy busy :)
 
W

Welsh-bird

Hi Tracy- just catching up here again.
Good to hear Gabs is feeling better today.... and tennis??? Where does that girl find the energy- please bottle some and send it to me!!
Hoping too that the gland issue resolves itself- you're baby really is one fighter!!
Hugs xx
 
DustyKat

DustyKat

Super Moderator
Just a thought T and something you might like to discuss with the Dermatologist/GI...

Is the psoriasis causing the swollen lymph nodes?

Dusty. xxx
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
T, I hope the node is shrinking by now! Did she make it to the tennis court?

PS, this is the best avatar pic! You are both FL beauties:). I'm assuming you are the more tanned one!
 
Crohn's Mom

Crohn's Mom

Moderator
Awe shucks *blushing* thanks Dex :hug:
I am the one with the blonder hair lol I am not tan a bit any more...the sun does not like me so I try to stay far away now ! :lol: That picture was taken about 2 years ago at a concert Gab dragged me to; I ended up loving her music tastes though... Kings of Leon ...I'm a big (old) fan now ! haha


Unfortunately, the lymph node is still there and no mistaking that it is palpable.
She left early this morning to go to her aunts house (an hour away) for a shopping day, and to spend the night. So of course she texts me after she gets there to tell me she has a "cold" today. (scratchy throat and stuffy nose), and her bones ache still. Lovely...I guess this is a pre-trial run for August when she moves away for college and I get to sit home and worry because I can not "see" her. :lol: She promised to let me know if she starts running fever or feels worse though :)

And, no she did not make it to play tennis. She went with her friends to get her hair done and she said it was just to hot out side to bother. I don't blame her .. who wants to mess up a fresh "do" by playing tennis in this awful heat ! :lol:
 
Crohn's Mom

Crohn's Mom

Moderator
Just an update:
The lymph node is still there and palpable, and another one has popped up close to the same area.

So, I have a theory :ytongue: just a theory:
She had the CT scans done of her neck and spine about 2 weeks before she started Cimzia. The only thing the one of her neck showed was that there were
"several small lymph nodes in the patient's neck bilaterally most likely benign by CT criteria and not adequately characterized by this technique"
I know from her experience that lymph nodes are quite common in CD (just not sure of the medical reasons for this).
Anyhow, my theory is that the Cimzia has just brought these lymph nodes, that were already there, to the surface and that they're probably nothing to worry about, so I am just playing the watch and wait game.

Like I said, just a theory, .. so any thoughts on that ?

Other than this issue, and the skin issues, her little cold is already gone, and she's feeling amazing and just being a busy busy girl and enjoying the hell out of her summer break! :)
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
I like your theory though I wouldn't have a clue as to it's accuracy! It sounds benign and I like anything that is benign:)

I think(hope) the best indicator is Gab's energy levels and general well-being!! That sounds great!!!
 
Crohn's Mom

Crohn's Mom

Moderator
Well, we have a new update :
I'm not putting this here to complain about it :), just to inform about the possibilities of Cimzia.

It is 5 a.m. here and Gab and I have just returned from a visit to the local E.R.
She came in around 1 and said she felt like her skin was on fire and she was itching like mad! So I gave her 2 benadryls and asked could I please see her back, because this is usually where the hives are.
She quickly informed me that it isn't just her back any more. That "spot" on her butt that I thought could possibly be a fistula has dramatically changed into red blisters... and a lot of them! She also has rash and hives every where, and a few other spots with clusters of blisters. (OH how I wish this girl would learn to complain sooner !!)
I convinced her to go the ER since it is Friday evening and we can't get ahold of her doctors until Monday.
The ER doctor suspects that she has possibly re-activated her chicken pox or shingles.
He sent her home with some Atarax for the itching, and also some anti-fungal medication. I am too worried to give her the anti-fungal though because I am not sure of the interaction since she is on Cimzia.
I am also wondering ( and here goes another one of my theories ) if the HPV vaccine she received a couple of weeks before she started Cimzia could be the culprit here. (again...just my theory).
So, I guess we wait till Monday and see what her GI has to say, or wants to do.
Poor girl...I can't believe she let it get this bad and still didn't want to complain. I had to beg her to go to the ER once I saw it. ARGGGHHH.

edit: I had to actually explain what Cimzia was to every hospital employee we came in contact with...including the doctor ! :ywow:
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
I don't know what to say T:( I just wish you and all your kiddos would get a long break from it all....like maybe a lifetime!!
 
DustyKat

DustyKat

Super Moderator
Godammit T! This is so bloody unfair! :ymad:

I don't know that the HPV vaccine would be the culprit here T. It is for the wart virus not the zoster virus. I think that Cimzia has the potential to trigger the dormant chicken pox virus, causing shingles in some people. Was it an anti viral medication they gave Gabs, something like FAMVIR?

Roll on Monday! It doesn't exactly instil faith in you when you know more than the docs! And in the meantime I hope Gabs can get some rest and relief, poor love, and Mum too!!!

Lots a love hun, :hug:
Dusty. xxxxxxxx
 
DustyKat

DustyKat

Super Moderator
Hey T,

I have looked on a couple of drug databases and I can't find Acyclovir (Zovirax) listed as a known interaction with Cimizia.

This is an extract from a Rheumatoid Arthritis website about Shingles and Cimzia. They suggest obtaining medication to treat the rash so I would imagine they are speaking about the anti virals like Acyclovir:


Shingles


Shingles can occur in individuals who have had previous chicken pox, as the virus that causes it can remain in nerve cells in a dormant state. Shingles is reported to occur more frequently in patients on anti-TNF although less so in patients on Enbrel than with Remicade or Humira. It is not yet known how frequently it occurs in Cimzia treated patients but it is assumed that there may be a small increased risk. In the event of an itchy, painful blistering rash of shingles type occurring over one area of the body you should report to your GP as soon as possible as there are medications which can help settle it down if taken early. Your rheumatologist or GP will be able to advise on whether Cimzia needs to be stopped temporarily as in the case of other infectious complications.
Click to expand...
It's a hard one to decide on. I know it is the weekend but is the hospital where Gabs had her op where the GI is located? Do they have a colorectal ward with on call GI's? If so I would ring and ask their advice.

Good luck and keep us posted hun!

Much love, :Karl:
Dusty. xxxxxxxx
 
M

MomofIBD's

Dam! Oh T. & Gab!!! I am with Dusty on this! I have seen shingles a lot because of my work. It is very very itchy & hurts too! It is not uncommon to find it in " the underware area " ! As for the med interaction call a pharmacy & talk to a pharmacist tomorrow!!! Even look on the net for the number of the maker of Cimzia call them! I will look around & see what I can find on the net!
 
M

MomofIBD's

Dusty you beat me to the punch! Good going! She is right they have Dr's on call! That's why the Doc's get paid big bucks! I would consider this a time you need to call the GI ASAP! Shingles is nothing to mess around with. You might even mention them bringing an infectious disease Dr. in on this! 2 minds are better than 1! They are a world of good info!
 
Crohn's Mom

Crohn's Mom

Moderator
Thank you so much Dusty and Mom!

I swear my life is a bad science fiction move ! :ybatty:

I really want to give her the med, because as you can imagine this rash is awful! Maybe I will try and call Mayo tomorrow and see what they have to say.
To top it off she's having abdominal pain as well ... enough that I had to start giving her pain meds again :(

Ahh...what are ya gonna do right...tis the life of good ole Crohn's...always keeping us on our toes !
:ghug::ghug: to everyone !
 
M

MomofIBD's

T. remember that Mayo is open 24/7!!!!
Hugs to You & Gab! Your whole family!
I hope the night goes by uneventful & Gab is able to get some rest with less pain!

:ghug::Karl::ghug:
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
T, how you guys doing this morning? I hope things settled and you got some sleep! Were you able to speak to anyone about the meds?
 
Karissa

Karissa

Tracy,

I'm so sorry about last night's episode! I really hope the Cimzia works for you guys. You are an amazing Mom. I enjoy reading your posts a lot because they remind me of my Mom during endless Crohn's crises.

Oh, and it doesn't surprise me that the ER had no idea what Cimzia is. I tried it when it first came out, and I was the only person at my hospital taking it at the time. And, the nurse accidentally injected it in my arm when she wasn't supposed to because she had never done it before. Not fun. It's becoming more and more common though, and I've heard positive things about it, so fingers crossed!

-Karissa
 
Crohn's Mom

Crohn's Mom

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@Karissa....thank you so much for your kind words :)
And, I can't believe you were injected in your arm! OH MY !
I totally understood when the triage nurse, and then the ER nurse did not know of Cimzia, but when the doctor came in and he didn't have a clue, and I mean NO CLUE, I was a bit put off to say the least...seriously, he could have just Googled real quick or SOMETHING! :lol2:

We didn't call the Mayo yet. Maybe that was a stupid idea, but she didn't want me to. The rash hasn't spread more, and the Atarax is helping with the itching for now. So instead we loaded up everyone (9 of us) and headed off for a fun and relaxing day at the beach! I am so impressed with Gab I tell ya....she recently bought a tank-kini because she wants to spend some time this summer on the beach. She simply used one of the tube tops I bought her under it to hold Ozzie in place, and was perfectly comfortable laying out, reading her book and relaxing by the pool today. (despite the visible rash). She never ceases to amaze me.
Don't get me wrong though...she really doesn't feel good at all. I'm getting a bit discouraged about the Cimzia for the first time now. "Something", besides the rash, is just not right. I don't quite know how to explain it. She's very quiet again, stomach pain, tired, etc.
I will definitely be giving her GI docs a call first thing in the morning. The way we figured it was that even if it were her GI doc on call this weekend, what could he have done really? So we just decided one more day wasn't going to hurt anything, and if she got worse we would just drive up there to their ER. Glad we didn't have to. :)

Hope everyone is having a fabulous weekend. I have enjoyed my sister and her 3 little one's be here so much. I will be a little sad to see them go on Tuesday, but life goes on.

Thanks so much !
~T~
 
DustyKat

DustyKat

Super Moderator
Awwww T, that is so fab that you have had a great time with your sister and her kids. And that Gabs got some time to relax and enjoy herself! YAY! She is just so deserving of every piece of normality she can get her hands on!

Oh my hun, I so hope the Cimzia isn't the reason why your mum radar is starting to ping. Everything crossed mate!

Thinking of you and much love, :Karl:
Dusty. xxxxxxxx
 
Crohn's Mom

Crohn's Mom

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Just a short update:
Talked to the GI nurse today and we have a 60 min appointment slot scheduled for tomorrow. Hopefully we can figure this out! She did say that it does not sound like Shingles to her because the rash is so scattered all over Gab's body; and she couldn't believe the ER doc didn't order any cultures on the blisters!
So hopefully tomorrow we will have some answers as to why Gab is feeling so yucky, AGAIN :(
 
Crohn's Mom

Crohn's Mom

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What a long, long day at the Mayo today...:ybatty: At least we have some answers.

Her rash is not shingles. It is ... MRSA !! Ugghhhh...my poor girl :(
So, we have to stop the Cimzia for a while until they have the infection under control. They started her on doxycycline and a prescription body wash for 2 weeks, and then she will go back to be checked again.
The GI nurse couldn't figure out what was wrong so she made a few calls and got us into a dermatologist while we were there. Thankfully she did because he was booked solid through August ! He is actually the one who diagnosed it.
Also, he had to remove her new nose ring because he said the infection is in her nose...and may have started there, but he's not positive of that. So her one little rebellion in life was just taken away...she wasn't happy, but she agreed it was for the best.
He asked her where she got it pierced at...she told him...he asked how clean it is there...she said, oh really clean!...he then said, sweetheart, is it clean enough for a young lady who has severe Crohn's disease and is on a major immune suppressant and just had major surgery? .... she says...I guess not ? I feel bad for her, but I did try and warn her of just this before hand and she did it anyhow. I told her today that maybe I'll change my approach now on my attempts of letting her start to make decisions on her own! :ylol:

We also saw a physical med pain doctor for her back and legs this morning, and he has prescribed 4 weeks of physical therapy. He also checked her B12 levels and they are great...and.....ready for this....he checked her sed rate as well and it's at 3 !! Yes !! That is amazing in itself !! I was so happy to see that number !! :)

Oh yeah, her GI nurse also said we will revisit the lymph node issue after the infection is under control. She said they are definitely there, but seems to think they are reactive and will clear with the infection. So...fingers crossed there !

All in all it was a pretty good day. I was/am a bit disappointed to say the least that she has to hold off on the Cimzia, and may not be able to take it again, but if that is what is needed then that is what we shall do. Only time will tell I guess....

My sister is gone now so I am going to enjoy my nice quiet house this evening ! :ylol:

edit: P.S. : The dermatologist did take culture swabs from 3 different blisters even tho he is pretty sure he is right :) He will call as soon as he knows for sure.
 
Last edited:
DustyKat

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Bloody MRSA!!! Oh poor Gabs...:hug:. It could have been their all along T, but either way, lets knock this bugger on the head!

WOW!!! Great blood results T! I am so happy for you and Gabs.

Oh, I will have everything crossed right along with you on the Cimzia.

Ahahaha, enjoy the peace and quiet hun and let us know how Gabs is travelling.

Much love, :Karl:
Dusty. xxxxxxxx
 
Dexky

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Well at least you know now! I don't know what MRSA is but it sounds "treatable" so I'll take it! I hope it doesn't interfere with the long term prospects of Cimzia! Thinking about you guys T!!
 
Crohn's Mom

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MRSA is a strain of Staphylococcus aureus (S. aureus) bacteria. S. aureus is a common type of bacteria that normally live on the skin and sometimes in the nasal passages of healthy people. MRSA refers to S. aureus strains that do not respond to some of the antibiotics used to treat staph infections.

The bacteria can cause infection when they enter the body through a cut, sore, catheter, or breathing tube. The infection can be minor and local (for example, a pimple), or more serious (involving the heart, lung, blood, or bone).

Serious staph infections are more common in people with weak immune systems. This includes patients in hospitals and long-term care facilities and those receiving kidney dialysis.
Click to expand...
Here's a short, technical, run down of what MRSA is Dex....
basically, in people terms, it's a nasty staph infection that thinks it can out run antibiotics! :rof:
 
Dexky

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I'm glad you added the disclaimer at the end T!! I'm definitely just basic people:)!! Whatever it is, I hope it is soon under control!!
 
Crohn's Mom

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The lovely new dermatologist just called and confirmed that it is definitely a penicillin resistant staph infection. It was the same infection in all cultures, which is actually a good thing. So the meds she is on now will take care of it, hopefully, and then we can go from there.
Her face is actually already looking so much better after just a day on the meds, so we're just trucking along.

Now if those nasty lymph nodes go away right along with the infection we should be good to go with Cimzia again in a few weeks....


I almost forgot again...When we met him the other day, I was explaining to him that she has had this intense body itch since she came off of the steroids because I didn't want "all" of the itching to be blamed on just the rash. I'm glad he understood and listened, because he is going to continue seeing her after the infection is gone and see if he can figure it out. And hey Dex...guess what he's checking first because he asked if she has had any previous problems with her liver ??...interesting huh....
He seems like yet another great doctor at the Mayo Clinic :)
 
DustyKat

DustyKat

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Thanks for the update T!

Thank god for decent doctors...:worthy:. The liver and itching make perfect sense so I can see why he would start there. I am just so incredibly happy that you have found this guy and that Gabs is finding relief and feeling better...:cheers:

Much love hun, :Karl:
Dusty. xxxxxxxx
 
Dexky

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Interesting yes T!! But I hope there's nothing wrong with Gab's liver! It is time for her to get some good news for a change!!
 
Crohn's Mom

Crohn's Mom

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That's where I am leaving it ...at Interesting ! LOL...she does NOT need any other issues for sure! I'm just going to assume it's a food allergy of some sort until they prove to me otherwise :)
 
Crohn's Mom

Crohn's Mom

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Bring on Friday ! Gab gets to start her Cimzia again...yeah !!
And, she doesn't have to 'start over' she goes straight into once monthly !

She finished her anti-biotics for the MRSA infection today and her skin looks amazing !
I think she's finally on the right road to health and remission ! :)
 
DustyKat

DustyKat

Super Moderator
Excellent news T!

Sending Gabs all the luck in the world with the recommencement of Cimzia and for good health! She so deserves it hun...

:goodluck::goodluck::goodluck:

Much love, :Karl:
Dusty. xxxxxxxx
 
Crohn's Mom

Crohn's Mom

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Could someone please push the STOP button for the roller coaster ride we live on here ! arrgghhh!

Came home from work today and was talking to Gabrielle and thinking, wow, your face looks so clear and beautiful again. Then she says oh mom by the way....I'm pretty sure the staph infection (MRSA) is back again ! She showed me the rash and where it has just started to be "sores" again :(
This sucks !
So what next ? I wonder what the doctor will say now ??
We have an appt at the Mayo clinic tomorrow, ironically enough, to see the dermatologist for followup. I guess I'll have to put another call into the IBD nurse again as well.

How in the world am I going to get this girl off to college in 6 weeks ?!?!
 
DustyKat

DustyKat

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Oh man T, I am so sorry to read this...:(:(:(

ARGH!....Give Gab a break already!

Good luck with the appointment mate, I will be thinking about you all.

Loads of love, :wub:
Dusty. xxxxxxxx
 
Crohn's Mom

Crohn's Mom

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I feel so blessed to have the help of the Mayo clinic..I can't even tell you!

The dermatologist is absolutely wonderful! (and he's not afraid of Cimzia or Crohn's!)
Yes, we were right, and the staph infection has come back. But, he doesn't think it's caused from the Cimzia itself, but from her already immunosuppressed system. It took me a minute to process that, but I think I understand where he is coming from.
We expressed our concerns about not wanting to have to stop the Cimzia treatments and he said oh NO WAY...it's gonna take a lot more than this for us to stop it. Cimzia is amazing, it's doing it's job for her, and we're not scared! LOL I just love this guys sense of humor :ylol:
He does not want to continually load her up with antibiotics (thankfully). So the plan for right now is for her her use the prescription disinfecting body wash one week before injection, and for one week after in hopes that it will hold the sores at bay. If this doesn't work, then he will prescribe antibiotics.

So while he's telling her this, he asks if the body wash helped the first time around. She proceeds to tell him how she doesn't know..she never used it. Both he and I got the wide eyed stare on our face. I just looked at her and said what ?? Then we all kind of chuckled. I told the doctor she still thinks she's invincible even after all the hell she's been through.
His response...
"Of course she does...she's kicking this horrible diseases ass !"
:ylol::ylol:
He said he will never forget her and after meeting her the first time he went home and told his wife and daughter all about her.
Love, love, love his attitude !!
We are blessed :)

edit: I almost forgot...As far as the chronic hives are concerned. He doesn't want to put her through any allergy testing (she's had it done twice previously), or any crazy elimination diets to try and figure it out (we've done this as well...what a pain!) so he prescribed Allegra Allergy 2x's per day, instead of once per day as most people would take, and said this will most likely keep them under control. If not, then he will reconsider his plan of action. Works for us! She's been through enough already...
 
Ian

Ian

Location
London, UK
That's great news Tracy :) I read this thread back when Gab started Cimzia and came back to see how things were going - I was dissappointed to find out about these setbacks but I'm really glad she can keep taking it. I like the sound of this doctor to!

And I think it's really encouraging that it works for her because, while everyone is different and has success with different meds, I got the general impression from things I've read that Cimzia has proven to be the least successful of the biologics? I don't know, I might be totally wrong, but I think I read that the reason why it's not available here in the UK for Crohns (yet, anyway) is because it didn't initially prove to be effetive enough to outweigh the risks that it carries as a biologic. So I reckon that if Gab is responding well to it, that probably means there's a very high chance she'll respond to the other biologics too (if/when she needs them). This is just me theorizing of course, but I'd like to think this bodes well for her long-term management of the disease in the future :).

So apart from the MRSA is she still feeling well? Hope you can get it all sorted before she starts college, is she excited?
 
Crohn's Mom

Crohn's Mom

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Thanks so much Ian :)

I'm not quite sure on the statistics of Cimzia's success. Her doctors at the Mayo clinic are behind it 100%, however, they did not "push" this choice on us, they left the decision on which biologic to choose completely up to us. I in turn, left it up to Gab to decide and encouraged her to research and make an informed decision. I personally wanted her to try Remicade first because I know a lot more about that, and I have a friend who used it with great success. (20+ years remission), and it has been around and approved a lot longer. Gab did not want to be tied down to a chair for 2 hours every time, or did not like the idea of not seeing the actual needle with the Humira pens. We didn't realize until after that you can get Humira in a syringe, so I am sure if she needs to switch from Cimzia at some point she will go that route.

Aside from the MRSA she is thriving! She tends to wear herself down and ends up sleeping around 12-15 hours straight at least once a week; but that is because she is like the energizer bunny now and will not stop! :ybiggrin:
She is so excited to be going off to college I'm almost taking it personal LOL. I keep telling her I think she's just a bit too excited to leave me...
Seriously tho, I couldn't be happier with her progress.
Is she 100% ?? NO. But I always tell people that she is at our perception of "her healthy" now and getting better every day; whereas a normal healthy person with her symptoms would most likely be whining and complaining that they "just don't feel good", or "their bones hurt", etc..daily.
She is quite impressive and between her and I...I am the only one who worries about her health. She lives her life as if CD does not exist, and if it happens to stop her for a day, a week, or a month, she continues after as if it never happened. :thumright:
 
DustyKat

DustyKat

Super Moderator
Hey T,

This is so, so, so great to read!!!

It is so fab to have a doc that you have a great rapport with and you respect and trust, it just can't get better than that! It does so much to allay your fears and trust that you are doing the right thing. I am so happy for you guys!

So, are you going to start assisting Gabs with her shower so you can be sure she is using the wash??? :ylol2:

Sending all the love and luck in the world hun that the wash and tabs knock the bugger on the head!

Much love, :Karl:
Dusty. xxxxxxxx
 
Crohn's Mom

Crohn's Mom

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she's actually using the soap...and it seems to be working! Slowly but surely...
and no I am not making sure of this myself...just taking her at her word Dusty! LOL
 
DustyKat

DustyKat

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You sure about that? Ya not having the odd peek? :rof:

Ah, good to hear that it's working T. :)

Now if only she had used it in the first place...bloody kids! Can't live with 'em and can't live without 'em! :ybiggrin:
You're not still giving her death stare when she exits the shower are you? :ylol2:

Much love mate, :Karl:
Dusty. xxxxxxxx
 
Crohn's Mom

Crohn's Mom

Moderator
I'm really starting to believe/blame some things on Cimzia now. Mainly bruising. Gab has around 15-20 bruises all over her and they look just awful. This happened mildly, yet noticeably, after her last injection and we just weren't sure. However, there is another member here on Cimzia and is having bruising issues as well. I just finished looking on Cimzia's website and it says it is a rare complication.
Advise all patients to seek immediate medical attention if they develop signs and symptoms suggestive of blood dyscrasias or infection (e.g., persistent fever, bruising, bleeding, pallor) while on CIMZIA.
Click to expand...
Also she has a bit of an infection on her ear lobe. Her ears are double pierced and it is next to the last piercing hole. At first look I thought it was actually from the hole, but it's not. It's yellow and pussy (sorry...gross :ytongue:)
But another sign of "infection" to me in addition to the MRSA sores elsewhere that have not spread any more, but have not healed yet either.

She has an appointment to see her GI on this Tuesday afternoon and I am going to insist that he check her bloods if he doesn't suggest it. I think he is planning on it anyhow since this is her first follow up appt. with him since May 13th when she had her first injections.

This bruising is really bothering me for some reason ...:cool:
 
DustyKat

DustyKat

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So how often is Gabs blood being drawn?

I'm with you T, gets bloods done. Personally, this early on in a new treatment I would prefer to have been having bloods done weekly for a month and then fortnightly for a further 2 months and then monthly.

I hope it turns out to be nothing serious T, Gabs has been through enough to last a lifetime!

Good luck with the appointment hun. I have absolutely everything crossed!

Thinking about you all, :hug:
Dusty. xxxxxxxx
 
Crohn's Mom

Crohn's Mom

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She's only had her blood drawn once since surgery, and that was for the pain doctor, not her GI. He only checked her B vitamin levels and her ESR, but I was happy those results were normal! :eek2:

I know that sounds bad...but her GI doc agrees to only stick her when necessary, or if she's symptomatic, because she has a lot of scar tissue built up from all the years of poking weekly pre-surgery, and her poor veins are just done! :eek:
 
DustyKat

DustyKat

Super Moderator
Hmmm...that makes it difficult then.

How do you feel about it though? Is Gabs someone that shows symptoms early on or do her bloods reveal more about her than her symptoms do?

Dusty. xxx
 
Crohn's Mom

Crohn's Mom

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It makes me nervous ! It was one of the first questions I asked the IBD nurse; does the doctor order routine blood tests ? She said no, and he doesn't find it necessary. :yrolleyes:
He has been pretty spot on with everything he has ordered, diagnosed, predicted, etc. so far; but that doesn't mean he cant be wrong.
Maybe I have too much trust in him ?? I should have learned my lesson by now...

Gab usually shows symptoms pretty early on, and her bloods seem to follow suit, so at least I have that. That is why I will insist on bloods this time because I know her, and even though she only has a few very mild symptoms right now, she has them. She will/is denying any problems, but like I told her yesterday, my radar is going off and it's rarely wrong :ybatty:
I don't think her symptoms are "Crohn's" related though...I think they are Cimzia related; except her dark eyes...I'm not sure what to think on that one...that's usually her CD acting up and making her more anemic.
 
DustyKat

DustyKat

Super Moderator
Go with your gut T. I hear you about the dark circles, Matt always had those when things weren't right. With Gabs bruising you may well be spot on with her being anaemic, whether it be due to Cimzia or not. When you have her bloods done get her B12 and Iron Stores done as well.

I don't think you have put too much trust in him T. By the same token I don't believe that routine bloods aren't necessary. We all know here how individual this disease is and as such you can't make a blanket statement that routine bloods aren't necessary. In Gabs situation it may well be the case, she has symptoms early on, n our case it would not fit. Sarah always showed symptoms that the bloods did not reflect, so yes, she would fit that statement, Matt on the other hand is entirely different. He does not show symptoms until he is very ill, the bloods have always revealed far more then he physically does.

Thinking of you mate, :wub:
Dusty. xxxxxxxx
 
Dexky

Dexky

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Oh man, sorry T! I know you guys have really got your hopes up for the Cimzia! Poor girl, give her a break already!!
 
Crohn's Mom

Crohn's Mom

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Things went very well with the GI doc today..he is pleased with her progress and says if things stay this good then she will definitely be ready for her reversal surgery come December !:thumleft: Actually, he said that he would clear her come September if it wasn't for her being in the beginning of her first semester of college. Really stinks that she can't do it then, but like I told her, it's just an extra 2 months and its more time for the colon to be perfectly healthy for longer.

As far as the staph infection goes, he is contacting the dermatologist to have another round of anti-biotics called in before it has a chance to do any real damage. I'm super happy about this as in the last couple of days it has spread a bit.

As for the bruising, he is not really concerned. She is not having any bloody noses, or bleeding problems, and they are starting to disappear again. I'm sure they will show up again after her next injection, but again, he doesn't see it as a problem, and definitely not a reason to stop the Cimzia treatments.

This doctor is so very thorough with his questions and listening, I will say it again, we are blessed to have this hospital. And, he is so very confident in what he does and his knowledge that me and my "I will insist on bloods being drawn" attitude...shut right up and let him call the shots and do what he knows how to do. Hopefully we don't end up regretting that decision, but I feel comfortable with it right now.

So for right now, I and Gab, are very happy that she can continue the Cimzia.
I also asked him if he had a reference for a contact doctor out where she is going to school in the fall. He gave me a name of a good friend of his at the teaching hospital there, but at the same time said unless there's a hurricane stopping her from driving to the Mayo clinic, we don't even need to meet that doctor. LOL I guess it's made very clear to us now how important it is to have communication with the doctor who is prescribing the major immunosuppresents and not to try and screw around with any other doctors.
 
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