Please Help - Flare is still occurring!!!

[AlexSkate]

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

 

[Cross-stitch gal]

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/patient-services/shire-cares

 

[Sophabulous]

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

 

[Cross-stitch gal]

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

http://www.healthcare-information-guide.com/no-health-insurance.html

https://www.livestrong.org/we-can-h...sistance/health-care-assistance-for-uninsured

 

[AlexSkate]

If anyone could please tell me how exactly I can get my GI doctor to prescribe me different medications I'd greatly appreciate it.

 

[my little penguin]

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

 

[PDRTPA]

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!!

 

[Lisa]

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?

 

[udayc]

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.

 

[AlexSkate]

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?

 

[PDRTPA]

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.

 

[PDRTPA]

Does your doctor prescribe this for you?

Yes

 

[London]

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

 

[AlexSkate]

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.