Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications Humira treatment stopped - cold turkey

Has any one been on TNF-alpha blockers for years and then had to stop completely?

My insurance decided to audit my Humira prescription upon my latest refill and my Rheumatologist hasn't done his part to answer the PA. I've missed one dose and am about to miss a second. Bugs me a bit as it helps control arthritis, iritis, and crohns symptoms. I'm getting by on 30g fish oil/day and 20% ketoprofen cream I pick up from a compounding pharmacy. I have an appointment to confront him on this issue on Thursday as phone messages and messages through the receptionist do not seem to ever reach him.

Has anyone had to go from long term TNF-alpha blocker use to cold turkey? What was your experience like? Already on a NSD+.

I had an interesting conversation with Accredo today. I wanted to get a copy of the letter or form that was sent to my Rheumatologist so I could deliver it to him in person on Thursday. I was informed that they could not send me the form, that it could only be sent to a doctor. I then asked them if the contents of the form were secret and they said no. Then I asked if they could read the contents of the form to me and they said no the information is intended for the prescribing doctor. I then pointed out that that sounded like the definition of a secret to me. The conversation went around in circles and in the end they could not or would not give me anything or give me any proof that anything had even been sent to my doctor. This makes me wonder how many secrets doctors and insurance companies keep from their patients.

I'm so sorry to hear of this run around for you. This would be my worst nightmare (they would not be dealing with a rational person at that point).

I hope you get this sorted soon; make as much noise as you need to!

After four years on it, I had to stop Enbrel cold turkey after it gave me nerve damage. Within two weeks, the old pain started up again. During the next two weeks, the pain became, once again, unbearable. I hope you get the problem fixed soon. Good luck to you!

--Greg

Well I've managed to get some Humira samples from my Rheumatologist to hold me over for a while.

After I talked to my Rheumatologist it sounds like the insurance company was playing me against my doctor. With the insurance claiming that they couldn't refill the medication because they hadn't recieved a PA from my doctor while they where not allowing my doctor to send them a PA. The doctor is being told that they cannot send a PA request because they have been unable to make a case for the medication. Neither I nor my Rheumatologist really understand what that means.

In any case my immediate problem is taken care of but the insurance issue percists. The prescription has not yet been denied, but delaying it for 3+ weeks is a bit excessive.

So far I just ended up taking one of my Humira doses 4 days late which is not as big of a deal as completely stopping the medication.

I hope it all gets worked out soon. glad the doctor had some samples. that is really scary, not just for you, but for the rest of us. but glad its not your doctor, our doctors can be our strongest allies, glad yours is. hoping this becomes a thing of the past for you soon.

For me, only having a dx of "spondyloarthropathy", I hope the insurance doesn't decide that is not enough proof. Humira has completely changed my life, starting almost immediately. I can't even imagine going back to where I was.

I think you are correct, a 4 day delay shouldn't make much if any of a difference.

Acredo is suddenly my new delivery company for Enbrel. We will see how they handle it...they were good on the phone but I worry...

I was belted by my rhuematologist on stopping humira, cold turkey. He explained that stopping in an uncontrolled fashion helps your body to develop antibodies against humira. Thats almost a Catch 22 in your case, perhaps talk to your rhuemy about it, mine might be trying to put fear of God, i mean antibodies, in me.

That last sentence made me laugh…you are funny

I think you, or I guess I should say, your doctor, are correct……Kat on here had that happen when she had to stop her biologic due to infection, then she had to switch because the first biologic had become less affective due to stopping it during the infection….not that it will happen to everyone, but yes, I've heard of it happening.

My doc switched me to Humira as Enbrel, after 7 years, was giving me site bruises and I was getting rashes...so I wait and a new pharmacy calls...not Acredo, not express scripts...a local specialty pharmacy...so I got it and did the shot pen...it hurt, and it's in me for two weeks...on Enbrel I felt more control...if I get sick I've only got days of it affecting my immune system...now if I get sick it's still in me for a week or more! We will see how this goes...

I was only on Humira for a few months and then I stopped to get pregnant. I have not gone back on it because I can't get into the rheumatologist. I didn't have any problems stopping cold turkey.