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Newly Diagnosed and Looking for Relief While Waiting on Approved Meds


Sat, January 30, 2021 6:00 PM

My daughter is 19 years old and was diagnosed 3 weeks ago with Crohns. We both felt scared and relieved that the search for answers to her stomach and bowel issues was finally over. However, she was placed on diclclomine 20 mg (commonly known as Bentyl) to take 4 times a day to help relieve her symptoms until the insurance company (BCBS) approves the Cimzia that was prescribed. Now I'm learning that there is this terrible "wait and see" game with the insurance companies and they they may control which meds are approved..... Frankly, I'm frustrated and getting angry that my child is in a flare-up and has been for 3 weeks without any relief. Her doctor said she could put her on prednisone but doesn't want to, if possible, due to the side effects. Does anyone have any insight or suggestions?

Should I contact the insurance company and ask what is the hold up? 
Is there another steriod that you have found works that is not as strong as prednisone and only impacts the gut? 
Should I just allow her to have the prednisone to quiet the flare?

I would appreciate any direction you can provide.

FPO mwmiles2020
Joined Jan 30, 2021

Tue, June 15, 2021 8:00 PM

Reply posted for mwmiles2020.

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FPO susanshawq9
Joined Jun 11, 2021

Wed, February 24, 2021 10:30 AM

Reply posted for mwmiles2020.

So sorry your daughter is going through this. Just a comment on the Prednisone. Was diagnosed in 1971, and had a terrible time settling it down, and taking steroids were like a miracle drug, however all the side effects were not explained "back in those days."  Now I have had an osteoporosis diagnosis, and had a stone that blocked my bile duct that resulted in a bad case of Pacreatitis. In both cases two different doctors told me it was my taking Prednisone over the years.  Now my husband has taken it for severe allergies, and has had no problems.  Feeling better is everything when going through an episode, and prednisone really does that, just be aware of the side effects. I will tell you that I have been in remission with Lialda (I have ulcerative colitis) for 15 years, and am now, for some reason, having an episode - go figure.  There are good meds out there, but it does take awhile to find the right one.  And, yes, the drugs are all expensive! Good luck to your daughter!

FPO smaccrac
Joined Feb 24, 2021

Wed, February 17, 2021 10:32 PM

Reply posted for Denisespain.

I just came across a notice that UHC is making a abrupt mid-year change (remicade is no longer preferred and is now non-preferred with biosimilars being preferred). this is very wrong and concerning

FPO cda023
Joined Feb 17, 2021

Wed, February 17, 2021 10:32 PM

Reply posted for Denisespain.

I just came across a notice that UHC is making a abrupt mid-year change (remicade is no longer preferred and is now non-preferred with biosimilars being preferred). this is very wrong and concerning

FPO cda023
Joined Feb 17, 2021

Sun, February 14, 2021 1:31 PM

Reply posted for mwmiles2020.

The wait and see game can be really frustrating. I have been through several different medications, and with my doctor and insurance, I usually hear back about approvals in ~2 weeks. It never hurts to call and follow up regarding the status of an approval. 

As for the prednisone, I understand the hesitation regarding side effects. I just finished a 2 week tapered dose of prednisone and it did wonders for my flareup while I wait for a switch in meds. Talk with your doctor about the risks and options, but as a short term solution I had a positive experience with the only side effect being some heartburn. I went from the worst symptoms I have experienced since my diagnosis, to feeling better than I had in months within a few days. With my doctor, the pros of trying prednisone outweighted the cons, especially with a short dose having a smaller risk of long term side effects. 

 

FPO margold
Joined Feb 14, 2021

Thu, February 11, 2021 9:15 PM

Reply posted for charbs.

Unfortunately the medication used to treat Crohn's is not cheap which is why it takes so long to get insurance to authorize. I was originally put on Entyvio for my Crohn's and OMG I wanted to pull my hair out numerous times trying to get it all approved. While I waited to get it all approved through Tricare my doctor had me on budesonide and mesalamine and as needed lomotil. Eventually it all worked and for 2 years I had no issues. I am not back to square one because my doctor is switching me to Remicade. I am now dealing with insurance approval and I  am really hoping I don't have any problems because I will be behind on my infusions. Gotta love insurance 

FPO Teddybear71
Joined Nov 21, 2019

Thu, February 11, 2021 12:00 AM

Reply posted for mwmiles2020.

Hello,

I'm curious to find out how long the insurance took to approve the medication.  My son is 25, and having a flare-up waiting for way too long for approval of Remicade (new insurance is UHC).

Any advice on getting this expedited?  

Recommendations on doctors or infusion sites in San Antonio area?

thanks,

FPO Denisespain
Joined Feb 10, 2021

Thu, February 04, 2021 11:01 AM

Reply posted for mwmiles2020.

I was originally put on prednisone  and thought my problems were solved. I was warned there were terrible side effects, and there were. Weight gain, moon face, mood changes.  I got cataracts and osteoporosis. As I was being weaned off the drug I broke out in hives from head to toe. It works great but the side effects are brutal.

FPO charbs
Joined Oct 31, 2016

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