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05-23-2011, 09:46 PM   #31
AZMOM
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Tracy -

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

Love you - keep us posted -

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Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

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05-24-2011, 02:04 AM   #32
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BULLS***!!! That's sucks so bad T!!!

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

Much love,
Dusty. xxxxxxxx
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05-25-2011, 04:19 PM   #33
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AAAHHHHH.....A little validation from the nurse never hurts

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!
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05-26-2011, 05:09 AM   #34
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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!

Gabs!!!

Thinking of you all,
Dusty. xxxxxxxx
05-26-2011, 05:25 AM   #35
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T, I hope the node was just an unrelated anomaly! I know the Cimzia has given you and Gabs much to be hopeful for!
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05-27-2011, 11:43 AM   #36
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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!

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.
05-27-2011, 04:18 PM   #37
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Hahahahaha T...Let's have a party! Way to go Gabs!

Much love,
Dusty. xxxxxxxx
05-27-2011, 04:47 PM   #38
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Well it's been a little over 3 hours since the injections and Gab's starting to hit the wall of exhaustion
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

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! Only her ! LOL
05-27-2011, 07:01 PM   #39
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And I whine over a flu shot!! Good for Gabs!!
05-28-2011, 12:24 AM   #40
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And I whine over a flu shot!!
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! I hope things have settled T and Gab is feeling better when she awakes...

Dusty.
05-28-2011, 08:48 PM   #41
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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
05-29-2011, 12:48 AM   #42
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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...
Dusty. xxxxxxxx
05-29-2011, 04:49 AM   #43
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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!
05-29-2011, 10:57 AM   #44
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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. 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
05-29-2011, 12:28 PM   #45
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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
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05-29-2011, 04:23 PM   #46
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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
05-29-2011, 04:36 PM   #47
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Interesting Dusty....

I'll have to look in to that, as I didn't even know that was possible

thanks !
05-30-2011, 05:33 AM   #48
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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!
05-30-2011, 12:21 PM   #49
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Awe shucks *blushing* thanks Dex
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 ! 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. 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 !
06-02-2011, 03:47 PM   #50
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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 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!
06-03-2011, 05:29 AM   #51
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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!!!
06-03-2011, 10:05 PM   #52
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I'm just THRILLED she's having a good summer. Heaven knows you all have EARNED it!!!!!
06-04-2011, 04:25 AM   #53
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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 !
06-04-2011, 04:39 AM   #54
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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!!
06-04-2011, 06:38 AM   #55
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Godammit T! This is so bloody unfair!

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,
Dusty. xxxxxxxx
06-04-2011, 07:07 PM   #56
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the medication is called Acylovir 400mg ??

does anyone know if it's ok to take with Cimzia ?
06-04-2011, 09:01 PM   #57
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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.
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,
Dusty. xxxxxxxx
06-04-2011, 09:10 PM   #58
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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!
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*John (24) CD dx 12/2006 emergency bowel resec
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*Mike (22) 5/2009 emergency surgery IBS dx
*Daniel (13) CD dx 9/2010
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06-04-2011, 09:23 PM   #59
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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!
06-04-2011, 09:25 PM   #60
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Thank you so much Dusty and Mom!

I swear my life is a bad science fiction move !

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 !
to everyone !
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