You will find a lot of GIs don't follow these paths. They skip around or they keep forcing you down Path One even though predinsone isn't working. That's what kept happening to me. Prednisone didn't get me into remission, salfasalazine stopped working, so some were like "lets try meslamines! lets try immune suppresants!" Meanwhile you keep flaring and life sucks!
Path One:
- You flare up and go see your GI.
- They perscribe Prednisone. For most people this puts them into remission.
- Get on a maintenance drug and stay in remission. You keep trying pills finding one that will keep you in remission. May need to go back to Prednisone to get you into remission and try another maintenance drug. They will start on a generic salfasalazine or Balsalazide since they are cheap and have an OK success rate. If these don't work then they may try immune suppressants like 6MP and Azathioprine which are again cheap and fairly effective. The next step (or they may skip immune suppressants and go right to this) in this path is meslamine class drugs like Apriso or Lialda which have a good success rate but a lot more risks and side effects. Meslamines can be very expensive.
- Repeat if flare up occurs. Likely your maintenance drug stopped working and needs to be changed. Or your disease progresses and you head to Path Two.
Path Two:
- You flare up and go see your GI
- They prescribe Prednisone but you don't respond or it helps but doesn't put you into remission.
- They will talk the next class of drugs which are called biologics. They actually change the way you work; biologically. The idea is to stop your immune system from producing tumor necrosis factor (TNF) which is what the rest of your immune system is attacking and causing the inflammation.
- You will be prescribed something like Humira, Remicade, soon to be released vedolizumab, or other biologics. You'll go through hell if your prescription provider has not negotiated an affordable price for these drugs. The starter kits can cost over $10,000 and the monthly doses can be over $2,000. There are assistance programs available from the drug manufacturers, third party aid groups, nonprofits, and other patient advocacy groups... use them!
- You start at a very high dose and taper down to the maintenance dose. This is because this drug not only puts you into remission but also will keep you there.
- If you flare up again they can increase the dose, frequency, or both. Once back into remission then taper down to maintenance dose.
Surgical options. There are several options and don't be scared. It's not like you'll end up here in a couple months (unless you have a very severe complications or some other emergency basically forcing your hand) For most it takes many years before you even discuss these options and months after that before anything even happens. If you are c lose to this path or just anxious over the thought of living with an ostomy appliance I highly encourage you to read Alive and Kicking by Rolf Benirschke.
It's an amazing story of a young man in the prime of his life living the dream in the NFL. Ulcerative Colitis robs him of his life and health; he ends up in an emergency situation resulting in poorly placed, double, ileostomy. I don't want to give too much a way but he ends up not only living with two ostomy pouches but kicks in the NFL again. He emphasizes that having an appliance isn't the end of his old life but a begining of a new one. I was very scared of every having to live with something like this and thought it would pretty much end my life the way I knew it. After reading this I feel totally different about it.
How To Pay For Crazy Expensive Prescriptions:
Most drug manufacturers have an assistance program. Some are easy and some require what seems to be a full background investigation. We've looked into many but only actually used two; Lialda and Humira. They were both pretty simple to use; just contact them, sign up, and use the assistance card at the time you pick up your prescription.
Humira Protection Plan:
Here's how this works. Your doctor prescribes Humira and they need to get a 'pre authorization' from your prescription insurance company. Once they get that authorization the order is sent to your pharmacist. You see the price of it, have a heart attack, and feel hopeless.
Your doctor or clinic should have provided you with a packet of information and a little card for the Humira Protection Plan. It may come in the mail later; ask if they sent it. Call the Humira Protection Plan, they will take some information off the protection plan card, a little bit of personal info like name and address, and you should be registered.
Take that with you to the pharmacy. Tell the pharmacist to send the order back up to your insurance company with the Humira Protection Plan information, and it should come back with an adjusted price.
Humira will pay up to $2,000 for the 'starter kit' and $700 a month for the maintenance dose. Hopefully that alone makes it more affordable. If not then you need to reach out to other organizations that help pay for the medications people need. Or you need to hit your deductible (which will happen in like... one month) and then your co-pay will come down into the realm of affordable.
Here are some helpful documents:
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