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Crohn's Disease Forum » General IBD Discussion » Please Help - Flare is still occurring!!!


11-12-2017, 12:31 PM   #1
AlexSkate
 
Join Date: Oct 2017
Location: Sterling, Virginia
Please Help - Flare is still occurring!!!

I'm reaching out to the community for help - still in a terrible flare up. My current treatment plan; prednisone 40mg, Lialda qty4 pills a day, BPC-157 (twice a day), oral CBD oil, Aloe vera juice, pro biotic, vitamin D, Fish oil Omega 3, Tylenol, and Low fiber Low residue diet.

Nothing is working for me. I'm desperate and losing hope. I need different and stronger medications asap.

My treatment plan isn't working. I must make changes. My doctor isn't being of much help and I can't afford the further testing for the doctor to approve further meds which I also likely could not afford.

Is there a way for me to get better medicine that will work? Or, can I get a hold of some a little less expensive?

I don't think I can make it another month before my health insurance kicks in. I'm desperate and reaching out to anyone that can help me. Please post or pm me!

Thank You,
Alex

Last edited by Cross-stitch gal; 11-12-2017 at 02:18 PM. Reason: Not allowed to ask for meds from members
11-12-2017, 02:24 PM   #2
Cross-stitch gal
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Location: Vancouver, Washington

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I'm sorry to hear that this doesn't seem to be working for you. How long have you been on this medication? I do know that Shire does have a website to help those with problems as far as affording this medication. And, I am including the link to that for you.

I would also continue trying to contact your medical team if possible. Let the advice nurse know that you're having trouble affording your medication and that it isn't working. Please keep us updated on how you're doing. Lots of hugs and support are being sent to you.

https://www.shire.com/patients/patie...es/shire-cares
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Diagnosed:
Ulcerative Colitis/IBD 1996, Iritis 2001, Ulcerative Proctitis 2013, Indeterminate Colitis 2016, Remission 2017, Hand Eczema

Current Meds:
Pentasa 1000mg 2xday or Mesalamine DR 1.2gm 2xday, Canasa Suppositories (when needed) 1000mg 1xday, Tylenol 3 with codeine 300-30mg (when needed)

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600+D Calcium 2xday, Multivitamin, 65mg Iron 1xday, Fish Oil 1000mg, Vitamin D3 5,000 I.U., Eye Drops 2xday


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11-12-2017, 04:19 PM   #3
Sophabulous
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I have heard that aloe vera juice can cause things to go through you very fast, potentially affecting the absorption of meds. It could be nothing but you never know.

Hope you feel better soon x
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Diagnosed severe Crohn's of the Duodenum, Terminal Ilium and Cecum.

Currently taking Azathioprine 100mg, Esomeprazole 40mg, B12 Injections and various supplements. Azathioprine failing so awaiting next steps
11-12-2017, 05:50 PM   #4
Cross-stitch gal
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Location: Vancouver, Washington

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I don't know if this will help, but here are a couple of links about health insurance.

http://www.healthcare-information-gu...insurance.html

https://www.livestrong.org/we-can-he...-for-uninsured
11-12-2017, 05:58 PM   #5
AlexSkate
 
Join Date: Oct 2017
Location: Sterling, Virginia
If anyone could please tell me how exactly I can get my GI doctor to prescribe me different medications I'd greatly appreciate it.

Last edited by AlexSkate; 11-12-2017 at 06:56 PM.
11-12-2017, 07:06 PM   #6
my little penguin
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Basically GI will prescribe different meds if you have proven you "failed " the ones they prescribed
This can be blood tests
Scopes/imaging
Exam
Fecal caloprotectin
And symptoms

Sometimes a combo of the above

Have you tried Een (exclusive enteral nutrition)
Formula only no solid food
For 6-8 weeks
It has a good success rate in Crohns to induce remission
Simple polymeric formula such as boost or ensure have been used by some

Others need semi elemental such as peptide or peptamen
(Pricey )


Ds struggled the first year finding a drug that worked for him

Unfortunately that was a biologic even though technically by scopes his Crohns was moderate not severe
His extra intestinal manifestation however are severe including arthritis

It does get better
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11-21-2017, 09:23 PM   #7
PDRTPA
 
Join Date: Nov 2017
Location: Tampa, Florida
I'm new here but I'm not new to Crohn's.....diagnosed in 1998. No surgeries at all, no biologicals since early 2000's. When I flare and I can't tolerate the pain I give myself a 30mg shot of Toradol. It's anti inflammatory and relieves the pain within 30 mins. My ins doesn't cover it... it's about $10 a dose. I believe it comes in pill form but the shots are amazing for me. Obv... I'm not a Dr or recommending you do X, Y or Z.... just sharing what's worked for me. GL!!
11-22-2017, 10:27 AM   #8
Lisa
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I'm new here but I'm not new to Crohn's.....diagnosed in 1998. No surgeries at all, no biologicals since early 2000's. When I flare and I can't tolerate the pain I give myself a 30mg shot of Toradol. It's anti inflammatory and relieves the pain within 30 mins. My ins doesn't cover it... it's about $10 a dose. I believe it comes in pill form but the shots are amazing for me. Obv... I'm not a Dr or recommending you do X, Y or Z.... just sharing what's worked for me. GL!!
Does your doctor prescribe this for you?
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30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
11-22-2017, 02:52 PM   #9
udayc
 
Join Date: Nov 2017
Somebody mentioned EEN here.. you should try it for a week. Just buy Boost Plus in Walgreens and drink 4 or 5 of them each day and only 200 calories worth of other food. Try it for a week.. It works to ease symptoms and will give you time to think of options.
11-22-2017, 05:04 PM   #10
AlexSkate
 
Join Date: Oct 2017
Location: Sterling, Virginia
Toradol is a NAISD drug. While researching UC I have read and been told by doctors to avoid all NAISD drugs as they can cause UC symptoms to get worse. Toradol is a prescription medication and my GI doctors won't prescribe any medications upon my request or even while discussing further treatment options. My understanding after reading about this drug, the drug literature/documents basically say it is not recommended for patients with UC. What are your thoughts on this?
11-24-2017, 04:31 AM   #11
PDRTPA
 
Join Date: Nov 2017
Location: Tampa, Florida
Toradol is a NAISD drug. While researching UC I have read and been told by doctors to avoid all NAISD drugs as they can cause UC symptoms to get worse. Toradol is a prescription medication and my GI doctors won't prescribe any medications upon my request or even while discussing further treatment options. My understanding after reading about this drug, the drug literature/documents basically say it is not recommended for patients with UC. What are your thoughts on this?
My thoughts on it are you gotta go with what works for you.... In my case when I flare it's basically just a lot of abdominal pain that you're prob familiar with. One shot of Toradol will totally eliminate the pain for at least 6 hours and a lot of times ends the flare for me. Occasionally I need a second shot after 6-8 hours of the first one. In the meantime I drink lots of water. By no means am I talking about Toradol for everyday use.... in my case 1,2,3 months may go by w/o needing to go this route. Basically this is just my way to end a flare. As far as getting Toradol it's not that hard for me from my Dr's, but I don't see a GI, I see a funtional medicine DR and an alternative medicine DR. I'm on LDN 4.5, various vitamins and occasional hydration IV's.
11-25-2017, 11:38 PM   #12
PDRTPA
 
Join Date: Nov 2017
Location: Tampa, Florida
Does your doctor prescribe this for you?
Yes
11-26-2017, 01:50 PM   #13
London
 
Join Date: Nov 2017
I was on 40 mg prednisone and lialda and nothing was working. Doctor wants to start Remicade infusion. My doctor said that is the next step up in strength. Or shots of Humira
11-26-2017, 03:57 PM   #14
AlexSkate
 
Join Date: Oct 2017
Location: Sterling, Virginia
Prednisone didn't help me at 40Mg per day. After discussing this with my GI she said I could take the maximum 60Mg per day but for no longer than 2 weeks. I decided to increase the dose to just 50mg per day because it already gives me very bad insomnia. Finally seeing some improvement in my UC symptoms. Also now taking Dicyclomine 20Mg every 6 hours which causes blurry vision.
11-30-2017, 12:46 PM   #15
The
 
Join Date: Nov 2017
Location: Chattanooga, Tennessee
It depends on what you mean by "flare".

Nothing but blood coming out? Go to the Emergency Room. Your life is more than any bill.

Very painful movements? Lamaz breathing while going. If it doesn't stop after several movements... well... this is what I do for me: I fast. I just drink water for a day or two. This can be VERY bad, and isn't for everyone.
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