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Crohn's Disease Forum » General IBD Discussion » Another bad reaction, running out of options


12-19-2015, 12:14 AM   #1
afidz
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Another bad reaction, running out of options

If you recall, I had an anaphylactic reaction to remicade 6 weeks ago. Almost killed me. Wednesday I had my first day of Cimzia. Thought everything was fine. About 10 pm my hear started racing, my abdomen started hurting, my chest was hurting and I was gasping for breath. Went to the ER. I had every sign of a heart attack. But when they did the blood work, everything was fine. None of my organ were distressed. They all function at 100%. I can't believe that they are all perfectly healthy, the stress they are under from the hernia is insurmountable. I am going to be one of those people over 100 that just won't die. Anyways, they think I had an allergic reaction to cimzia, but they don't have proof. I was in the ER for about 20 hours (!!).
This morning I woke up to my face and eyes being swollen. I couldn't even open my eyes. and they burned like hell. I went to urgent care, they gave me steroids and and benadryl, it was probably the morphine I got yesterday in the ER.
I left out a lot of details, but man, can't I just enjoy my life for a minute? I am tired of fighting for everything Now I have to go to work tomorrow and try to explain why I kept calling in.
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Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
Inflammatory Arthritis

Failed meds:
Humira
Remicade
Asacol HD
Cimzia
Methotrexate
12-19-2015, 12:17 AM   #2
ronroush7
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I am so sorry.
12-19-2015, 03:43 AM   #3
Cross-stitch gal
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My oh my girl!!!! I have no words to describe. I hope they can finally get you taken care of along with some comfort. I'm here for ya and lots of hugs are being sent your way.
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Ulcerative Colitis/IBD 1996, Iritis 2001, Ulcerative Proctitis 2013, Indeterminate Colitis 2016, Remission 2017, Hand Eczema

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12-19-2015, 01:41 PM   #4
KayleighMeek
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Sorry to hear about the problems you have been having afidz. I'm similar with reactions to medications I am great at having them or not working. I also had an anaphylactic reaction to remicade and it was one of the scariest experiences of my life. Have your Drs suggested anything that you could try next?
I hope your work understand it's hard enough without getting grief from them.
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Current meds
Cimzia
Methotrexate

Previous meds
Pentasa, Aza, 6mp, Remicade, Humira and Sulfasalazine
12-21-2015, 01:52 PM   #5
wildbill_52280
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SCD diet(backed by science), psyllium fiber and probiotics(backed by science), marijuana with a vaporizer(backed by science). If you are adventurous enough, consider a fecal transplant(backed by science).

All of these suggestions have been investigated by scientists and show promise and are relatively safe options.
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Learn How Fecal transplants restore good bacteria that regulate inflammation to induce remission and how it has potential to be a cure for IBD in the future. Follow the link below.
http://www.crohnsforum.com/showthread.php?t=52400
12-21-2015, 02:06 PM   #6
my little penguin
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Wildbill diet probiotics etc won't stop joint inflammation though unfortunately


Sorry to hear about the reaction
Have they looked into mast cell disorders for you ?
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12-21-2015, 02:24 PM   #7
Fayth
 
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Fortunately on the other hand if you stop eating grains entirely it will stop joint inflammation, isn't that wonderful?
12-21-2015, 03:07 PM   #8
my little penguin
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Doesn't work like that for everyone
My kiddo included was free of almost everything
But still had inflamed joints
12-21-2015, 03:26 PM   #9
Fayth
 
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I didn't understand that post, your kiddo included was free of almost everything? what does that mean?
12-21-2015, 03:38 PM   #10
my little penguin
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He was on the crohns exclusive diet
Not grains
No red meat
Two tsp of sugar per day
Limited fresh veggies and fruit
Nothing packaged
No emulsifiers or fillers etc
No fruit juice
No starches
Organic everything

And he still had joint inflammation
His gut was good
12-21-2015, 03:39 PM   #11
paul11
 
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I am really sorry to read this. I am pulling for you and hoping you get some relief soon. it does seem like a constant never ending battle.
12-21-2015, 03:43 PM   #12
Fayth
 
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ah ok, it's just that like my dumb statement you shouldn't come to conclusions based on 1 patient. The way you said it was like anybody who had joint pain would not be rid of it, I'm assuming it also meant your kiddo tried marijuana

anyway best of luck to OP, it does feel like she should seek something else than hard drugs to treat herself otherwise she might just end up dying from side effects given her history
12-21-2015, 03:44 PM   #13
my little penguin
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His arthritis flares independent of his gut
No canned foods
No skins on food
High omega 3
Only olive oil and canola oil
No cookies cakes or other sweets
No gum
No candy
Etc.,,
12-21-2015, 03:46 PM   #14
Fayth
 
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I'm not sure what his diet was, Paleo minus red meat? What about dairy?
12-21-2015, 07:18 PM   #15
Maya142
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Has anyone suggested Stelara afidz? It is approved for Psoriatic arthritis and there has been one small trial in AS which had good results.

It also works for Crohn's and should be approved within a year. It's not an anti-TNF (it's an IL 23 and 12 inhibitor) so hopefully you won't react to it!

Sending hugs!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
12-21-2015, 07:27 PM   #16
ronroush7
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I use it for both.

12-22-2015, 01:42 AM   #17
Jennifer
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anyway best of luck to OP, it does feel like she should seek something else than hard drugs to treat herself otherwise she might just end up dying from side effects given her history
We can never assume that people haven't tried other options like diet or other alternative treatments. Also these medications have proven to be effective at inducing remission for people with Crohn's disease and other conditions like Ankylosing spondylitis which afidz also has. I know that she is doing everything she can to get both illnesses under control.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
12-23-2015, 12:45 AM   #18
afidz
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While I try to be mindful of what I eat, I do not think that diet alone is going to make my problems go away. I know that there are scientific studies done on SCD and Paleo an gluten and whatever else was mentioned, but its not for me.
My biggest issue right now, is actually not Crohn's, its the AS. Crohn's is a problem as I have started flaring after 6 years in remission, but its still very manageable. The inflammation that the AS has caused is insurmountable. I wake up fighting to catch my breath. I have trouble getting out of bed. My fatigue is at an all time high.
Really, what it is is that my immune system has taken control of my body and holding my sanity hostage. Everything is effected. My eyes have become very sensitive to sun light, my face is swollen. I can't explain the feeling, but my eye sockets are almost numb . My cheeks are really puffy. My hands have been replaced by sausages. I have started developing anxiety that I don't normally have. Sores in my mouth. I could go on forever. I think my ovaries are even effected!
Even though I had a reaction to Cimzia, I think I am still going to be staying on it because we don't know if thats what caused the reaction. I feel so much better, really. I haven't taken prednisone in 3 days and haven't run out of breath once!
Thank you guys for all of your input, I appreciate it
12-24-2015, 01:22 AM   #19
FrozenGirl
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Aww sorry to hear that. Though I second Stelara is you find cimzia doesn't work out. It can be good for GI stuff and AS so it might be worth a shot.
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Dx: Ulcerative Colitis, Nov 2013
Currently on:
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Remicade: 600mg, every 4 weeks
Methotrexate: 15 mg (injection)
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