Increased dosages and insurance

[crohno_trigger]

Hello!

I was planning on giving a lot of backstory but after 2281 characters I realized I am burying the lead under a mountain. So here's the quick and dirty.

Was on Enbrel then Humira for ankylosing spondylitis. Was stopped when I was diagnosed with thyroid cancer. Crohn's then got a foothold and reared it's ugly head. Now I'm on Cimzia 200 mg every 2 weeks.

I have noticed that while I feel really great physically and psychological after taking biologics, but the feeling and the effectiveness seems to wear off before my next dose. For example after 10 days when I take humira I get very moody and feel bad. I recently switch from 2 200 mg Cimzia shots once a month to 1 every two weeks.

I still suspect that my dosage should be higher, but my gastroenterologist has said he had no luck trying to get insurance plans to approve higher dosages. After a few months I will have a trough level performed but my insurance already labels that as "experimental".

Is there anyone with any luck or knowledge on the subject? Remicade is another option but it would be a shame to burn through another biologic so quickly.

 

[Maya142]

We have done increased doses with pretty much every biologic my daughter has been on. She took Humira weekly and she was on 400 mg of Cimzia every two weeks.

She's now on 400 mg every 4 weeks but she is flaring again, so we may have to go back to 400 mg every 2 weeks.

We were able to get a higher dose for Remicade too. Also for Simponi.

I am not sure why your GI is saying he hasn't had any luck - it is done quite often. You may have to fight with insurance and appeal, but eventually it has worked for us.

Has he ever measured your trough levels to see how much of the drug is in your body at the end of a dosing cycle? If there is none left, then that is usually enough proof to get insurance to approve a higher dose.

I know there are antibody and level tests for Humira and Remicade but I am not sure about Cimzia.

Alternatively, you could appeal based on symptoms. We did that for Humira - my daughter would feel it wear off (she has both AS and Crohn's) at one week. So she was put on weekly shots. We had no trouble at all getting it approved.

 

[crohno_trigger]

Yes that is strange my Gastro said he doesn't have a lot of luck with insurances. He said it is too soon to get a trough level though and what I'm thinking is that since my insurance says that Cimzia trough level testing is "experimental" that my insurance would not accept the results.

I think I'll try my GI again and be more persistent with my insurance. My (quick and dirty) research didn't turn up that 400 mg of Cimzia every 2 weeks was an option, so thank you for that information.

I do have issues with injection though. Humira and Enbrel had a nice autoinjection pen... unless my gastro is holding out Cimzia is fully manual.

 

[Maya142]

No, Cimzia only comes in the syringe form.

Yes, my daughter was on 400 mg (2 syringes) every 2 weeks. I didn't know it was an option either till my daughter's GI upped her dose. She still has a pediatric GI and because kids are growing, they tend to metabolize drugs faster, so ped. GIs often have to use higher doses and are very comfortable with them.

My daughter finds Cimzia much less painful than Humira. The pen is very convenient though.

In terms of trough levels, I believe you can pay out of pocket and they reduce the price if you do that. Or you can appeal that too. I'm going to tag crohnsinct since she knows more than I do.

If your GI does not agree to up the dose, it's worth asking your rheumatologist.

I would stay with biologics as long as you can. There aren't very many that treat both IBD and AS - just the anti-TNFs (not including Enbrel of course).

 

[my little penguin]

Be prepared for aLONG appeal process
Ds was on humira up to every 5 days
And now is on Stelara
After many months (8 months ) and appeals finally were approved to take 90mg every 4 weeks vs normal 8 weeks.

Find a papers with an expert that uses cimiza at 400 mg every 2 weeks
Email the experts
Briefly explain the situation
They typically will respond
They use xyz dose of abc and it works for the diseaseback

Send this email to the insurance/GI doc

Good luck

Any other papers you find also help

 

[my little penguin]

https://clinicaltrials.gov/ct2/show/NCT01024647

 

[my little penguin]

Conversely, a dosing strategy of 200 mg or 400 mg every 2 weeks may regain response in even more patients.

From
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3096126/

Certolizumab Pegol for Moderate-to-Severe Crohn's Disease
William J. Sandborn, MD

 

[crohno_trigger]

From


Certolizumab Pegol for Moderate-to-Severe Crohn's Disease
William J. Sandborn, MD

Thanks for the above help! My brother is a child psychiatrist (and a good one too) and he said you really need to push the insurance companies and they'll eventually cave. But now I actually have more info to go by which really helps. I have a soliloquy of background info I was going to post here but it may be better served for the expert.

I really want to avoid taking SSRIs or benzos to cover for not treating my Crohn's properly, so hoping I can leverage my ADHD to annoy people into somewhat quicker action. :shifty:

 

[crohnsinct]

Sorry, I am only well versed on Remicade trough level testing. FWIW, the primary testing facility for Remicade would appeal on your behalf until they exhausted all appeals. The cost of that testing was $2,500 but if insurance denied all the way through all appeals, then the testing facility would write down the bill to $250. Eventually the makers of Remicade realized that trough level testing was essential to properly dosing and keeping patients on Remicade so they agreed to cover two trough and antibodies tests per year. Perhaps the makers of your drug do something similar. It may be worth it to ask them.

Also, if after all appeals insurance denies the higher dose, it may be worth it to contact the makers and see if they will pick up the cost of the incremental dosing. It is often financially in their best interest (not to mention the patient's best interest medically) to keep a patient on the drug paying for lower dose and giving them the incremental than lose the patient altogether.

 

[crohno_trigger]

My insurance flat out won't pay for the Cimzia trough level but it's actually only $250 total if I remember right. Worst case I can pay it out of pocket, and I can see if it can get written down further.

 

[crohno_trigger]

Would anyone know how to contact Dr. William Sandborn of La Jolla, California via email? I finally feel good enough to follow through with the above mentioned plan and he is the author of the above journal but all I can find is a phone number.

I could also request one of my doctors to contact him for me, maybe that would be easier.

Please advise, thanks!