and its back...

Humira is only $5 with their copay assistance program. It's cheaper than all my other meds. Are they wanting to take you off 6mp and that's why they want to start you on Humira? The side effect profile is similar or better than Imuran's, which is similar to 6-mp (I have not researched 6-mp).

Thank you for sharing this and keeping us updated. I’m terribly confused at the moment so not much help. But I read this in my new book (crohns and colitis for dummies): “...Also, the latest research is showing that if we use Biologics early in the disease, we may be able to change the disease course and prevent complications and risk of surgery all together.”

I’m sort of in the same boat as you. My life isn’t great, but I seem to manage diarrhea and most of the pain with my diet... I think I’m kind of in denial that I have this disease. I’m also really frustrated about being tired and not having energy to just “do life” outside of my job and studying. My GI wants me to go on biologics. I change my mind every day, but I’m also allowing myself a little more time to torture myself with stressful thoughts.... , I mean to think about it a little more before I make my decision;)

i just got another note from the GI doctor saying my insurance doesnt cover Humria and i have 2 options.

Continue the 6mp and consult a liver doctor about my high numbers or go through the entire colonoscopy process again and get biopsies again because they were not able to determine what kind of IBD i had prior when i was flairing up (Chrons or UC). They had just determined it to be "IBD undetermined".

I am convinced nobody in the medical field has a clue at this point. I dont want to go through another colonoscopy with no symptoms. That makes no sense.

Did the 6mp get me into remission? No idea......the first flare i had a few years ago went away on its own and they did the colonoscopy then with biopsies and had no clue other than to mark down IBD-U which means i could have either UC or chrons or ??? The GI doctor i followed up with couldn't even read what the doctor that did the procedure wrote down. Since it went away on its own i didnt get on meds then The last flare i had was ~9 months ago...i got the 6mp then but by the time i started taking it my symptoms were already going away. They had put me off and on pred for a month or more. I continued to take the 6mp this whole time and the doctors seemed pretty proud of themselves for helping me out but i was never convinced they did anything really.

i asked up and down if the 6mp was safe and they said yes. I was on 75mg of that throughout my flare. I went back for a follow up after a month or 2 and my symptoms were gone. They then decided i should be taking more 6mp which makes no sense and upped my dose to 125mg (2.5 pills) per day. I questioned why i would need to take more since i wasnt having any symptoms and they said...oh....it will help keep it away?!?. So..thats what i did and now my liver is all fouled up.

Now since they cant determine what a have and my insurance wont cover whatever they are trying to prescribe next because they didnt figure it out the first time, i have to go through all that again for absolutely no reason just to get on a drug for something i am having no symptoms for? That makes 0 sense. I am so sick of dealing with these idiots and wasting my time running back and forth to appts. I am going to lose my job eventually (or so i fear). I realize that alot of folks have it a LOT worse off than i do as i have only had 2 flares ever so i shouldnt complain i guess but for crying out loud....how hard can it be? Its all just tubes......

Post Edited (simon71) : 12/7/2019 10:59:03 AM (GMT-7)

Ugh, I'm sorry to hear you are dealing with all of that. Also sorry to hear your insurance won't cover Humira. That's a bunch of bullcrap right there. My insurance doesn't even want to give me nausea medicine to treat the severe nausea I'm getting from starting Imuran. Yet they will cover the super expensive Humira and Remicade, which makes absolutely zero sense.

I agree with you that it doesn't make much sense to start on a new medicine if you aren't having any symptoms and have no idea if 6-mp was even doing anything and you've only ever had two flares that sound like they were fairly easy to control. I probably wouldn't if I was you. Are you on mesalamine meds? That's all I had to take for the first 6 years I had UC, both oral and rectals. I'd be pretty worried if my liver enzymes got messed up, too.

A liver doctor will most likely tell you you need to stop taking 6MP. When my LFTs (liver function tests) went high on azathioprine (a sister drug to 6MP) I had to stop taking it and my levels returned to normal within a few weeks.

Is your doc experienced with IBD? Not all gastroenerologists are. You could see if you can find another doc since you don't seem to have a lot of confidence with this one. Another scope is in your future regardless as a new doc will likely want to do one.

I’d explain the financial situation to your dr or his nurse/scheduler and see if they can’t fit you in before the end of the year.

As far as insurance goes, in my experience (and personal opinion) they just like to make you jump through hoops. If you give in to them and don’t do the first jump then they call that a success. If you do keep jumping then eventually you’ll get success. It sucks but there it is. You have to appeal and make sure your dr helps with your appeal. I’m taking candy to my drs nurse today because after a 4-month battle of forms and more forms and phone calls I am finally getting a medication (for free from the manufacturer).

Also check out assistance for Humira. I talked to someone recently who gets his Humira from a foundation.

You said a colonoscopy report was unreadable? Surely they can go back and interpret that better? I’d ask for someone’s head on a plate for that one!

(sorry about the super long post.....sheesh).

Yeah...really unclear handwritting.....

The doctor that did the procedure spoke to me afterwards and i cant remember all that he said because of the anesthesia / drugs but i did ask him 1. if i was going to live and if i could have a normal life or if i am doomed. I basically got one word answers from him. Yes and No. He seemed to need to be somewhere else or was late for something else at the time. I figured whatever he wrote down would be readable so i left it at that. From what i can recall he said is i am perfectly fine but had a bit of inflammation throughout my colon and to follow up with the folks back at the clinlic. He seemed too busy to care too much. I get it....he looks at colons every single second of his life. What does he care. I am not his problem. Thing is i would expect that he could write properly.

The next week i went to the clinic for the follow up and the first person i met with couldnt read anything that the doctor wrote. They seemed to shrug that off and basically wanted to get me on a "plan". They then determined well...it must be IBD-U (undetermined) and then assured me its impossible to tell by looking at it blah blah blah. Here is a bill for $5000. Then they said....well ....you do need to be on drugs for the rest of your life. I said no thanks...you cant even read what the doctor wrote. I was having no symptoms at the time so i just said i would call them if it happens again and we can setup the "drugs" then.

A year later ..same time in the winter it struck again. It was a few months and finally i gave up and called them to get on something to make it stop before i lost my job/career. (They dont seem to think this kind of thing is eliglble for disablity but i am here to tell you even if i do have a mild case of this there is no way to work or hold a job. I cant imagine if it was worse). If i lose my job, i lose my insurance and if that happens i might as well be dead. I cant afford any of this without some assistance through insurance. Basically i am working so i dont crap my self.

Anyway.... They put me on pred which made it go away quickly but not long enough so the second they took me off it came back. They put me on more pred for a few more weeks or a month...and it was gone. At that same time they put me on Liada?. I took that for a couple weeks. I went back and then said...oh.....this must not be working. (i was still having mild symptoms). They scrapped that drug and put me on 6mp. A couple weeks went by and no change really. I asked why it wasnt working.....and they didnt pull me off the 6mp and then stated it can take 3+ months to start working....which makes no sense but what do i know. They assured me it was safe so i kept taking it. Months went by and i had blood tests every couple weeks.......all my symptoms were gone. I had a follow up with the doctor and they seemed quite impressed that all my symptoms were gone and rather than lower my dose of 6mp due to no symptoms (it was now mid to late spring) they raised it to almost twice the level i was taking. I asked what the point of that was? I am not having any symptoms. Why would i need to take more of this? Response: Oh....this will keep it from coming back or help it to not come back.

I have been on that dose ever since. Now my liver numbers are high.....so here i am.

Here is what i think. I dont think the doctors care. Its a job to them. THey see 1000s of people a month. I think they want to help people but they are too busy to really care. Treat the symptom and not the cause. Here are some drugs...now go away. That has been my experience. I am not trying to be negative about it nor do i hate doctors. I think there is so much legal nonsense that goes along with doing anything different than what the "book says" so thats what they do. Its a quick answer to a complex problem. i dont think any doctors got into the profession not wanting to help people. I think they really do want to help but it is a business. If you dont follow the business rules...your fired. Also...doctors work unreal hours and most of that is just doing nonsense work like paperwork for each person they see. They didnt know they were signing up for that when they started down the path of becoming a doctor. They work LONG hours and are likely burned out. At the end of the day they need to go home and pet there dog and hug their kids or whatever. They are people just like anyone else. They take the path of least resistance (human nature). I am sure at some level they are expected to see x number of patients per day or that is a problem with their manager or for the business. They have to hurry. I guess it comes down to they are not paid to care. They are paid to give you drugs and get you out the door from a business perspective.

I suppose that still sounds horribly negative. I dont fault the doctors. I guess i fault the business or the process.

Anyway.....rant over i guess.

1. The doctors cant read what the procedure results even say. I have given up even arguing that point. THey just change the subject and want to talk about how every reacts differenty to the drugs and all that nonsense.
2. They have instructed me to lower my dose of 6mp. I am on 50mg a day now which is 1.5 pills less than i was taking before.

Here is another fun fact which makes 0 sense

My liver numbers were high on 2.5 pills of 6mp per day. The doctor said to lower it down to 1.5 per day and come back in 2 weeks to test again. I did that.
The numbers were still high.
Lets all not forget that it can take up to 3 months for the drug to work in the first place so why would my numbers change in 2 weeks?
The doctor instructs me "via email" to lower my dose to 1 pill per day. I do that.
(they then say i need to get off the 6mp and get on Humira or consult with a liver doctor about my chronically high numbers). They also tell me that my insurance doesnt cover the humira because they havent diagnoised what i have definitively. Again....clearly the insurance company doesnt know how this disease works either; its not black and white like that.
I then inquire about having a vitamin D test to see if my levels of that are low again (its winter) and if i can get the blood liver tests done at that time while on 1 pill of 6mp to see if that has changed at all.

The doctor replies saying that it can take a up to 3 months for the 6mp to ramp up or down in the system so testing after a couple weeks wont do any good?!?!

Why the hell did i go in after 2 weeks the previous time then? I am baffled by it all.It just doesnt seem like they know what they are talking about at all. I dont know. But hey......here is a TON of medical bills for you pay now. Dumb.

Didn’t you ever see a biopsy report? Surely they did take biopsies? That’s how a diagnosis is made and you can request a copy of that.

If they did a colonoscopy without biopsy then go find another GI especially one who specializes in IBD. And I’d shop around for a new dr anyway.

And you can definitely make an appeal to your insurance company for the Humira. It will involve your dr stepping up to the plate to write the appeal though.

Insurance companies - IMO - are ruining the medical profession and process but it’s a double edged sword because we need them to pay the bills. No easy answer to the problem I’m afraid We just have to be very proactive with them.

Quincy said...
Rectal meds?
Probably the Lialda didnt "work" because the rectum wasnt treated. I would suggest you push for it as well as rectal.

I agree with Q. Rectal mesalamines are very effective with few side effects.

ah......3 weeks later and i finally....got a letter? for referal to the same place to see the herpetologist or the liver Dr.


Turns out they cant even get me in to see him for another 2 months.

Nothing like sitting around waiting. Weird.

That sounds so strange. If I were you I would get another doc. Don't let docs bully you. I always keep in mind that a medical student who just barely graduates is still called Doctor. They aren't gods, but when you find a good one keep them.

Both Humira & Remicade are used for both UC & Crohn's. If you do decide to start one of them they both have patient co-pay assistance programs and you will only have to pay $5 per month for Humira or per infusion for Remicade.

Based on what you have said it doesn't sound like you gave mesalamine a fair shot at working. My suggestion is to try max dosage of mesalamine oral and rectal before you decide if you have to go on biologics. If you are currently having no symptoms you will stay symptom free. If you start to flare then you know it doesn't work for you and then you can decide about the biologics.

Are you still on 6MP? If so, are they monitoring you bloodwork? If your liver function numbers are out of whack it's probably not a good idea to wait for another couple months til you see the specialist. You may be risking serious damage. The docs probably know that and that may be why they are being urgent about the biologics now. You really need to get off 6MP.

Yes...i assume they are well versed in IBD. It is one of the biggest Gastroenterology places here in the midwest as far as i know.

I have been down on my dosage of 6mp for more than a month. I am going to have them run blood test again. I want to get off of it regardless. Symtoms wise i have only really had one flare in the past year which led me down this nightmare. THe first flare i ever had was 2 years ago..same time of year (winter)....but that healed up on its own. The second one i had last year i thought i was going to get fired for missing so much work so i went to the doctor and got on the pred which cleared it up after a few weeks and then they put me on 6mp...

DId the stool cultures a few times back when i first went in so they could rule out other things. I had the colonoscopy at the very tail end of my first flare 2 years ago and they said it was IBD-U which stands for undetermined. Meaning it could be chrons or uc but they couldnt tell (probably becuase the flare cleared up on its own). Either way......today after 2 years my chart says i have chrons. 1 month ago they said (a few posts up) that my insurance wouldnt cover any biologics because it wasnt exactly determined what i had (UC or Chrons...based on the IBD-U status). Today i had asked how i can be put on biologics when it isnt covered. Then they say oh...it is because you have chrons. ??? Apparently it now says that in my chart. I am betting that someone changed it so that they would cover the drug. Very odd...

I just think it is very odd for someone who has never had an issue and has "flared" twice in their whole life and never been sick in the past....be expected to inject themselves for the next 40 more years "just because".

I could see if i had this for many years and it was chronic. Maybe it will become that and they are trying to stop it. I Guess it just seems very strange to knee jerk prescribe life long drugs to a somewhat normal healthy person with no real heavy history of GI issues.

The fact that both flares for me happened in the dead of winter has me believing it has to be a balance in vitamin d or something like that. That does appear to be related in some cases. It has to be something unbalanced like low D levels, diet, environment.....something. You cant get me to believe that at some point my immune system (after 40 years) just decides to say......"hmm....whats that? A colon? Never heard of it......lets kill it"
That makes no sense. Yet...thats what seems to be the excuse or idea. The immune system thinks its a foreign invader and wants to destroy it like any bug or diease. The body just attacks it self. Thats like continually punching myself in the face to death and then saying......oh.....his arm thought his face was someone elses face....(im bad at analogies ).

I know people have it a lot worse than me for sure. I dont want to get to that stage or level and i tell you when i was flairing it was very very horrible and quite scary. But.....still...it seems very odd. I just want to make sure i am doing the right thing. I have to give thanks for this forum and its members. It has been great. Thank you.