Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group First post, what a day...

Hello folks!

First I wanted say how much this site has helped me over the past few months. I was diagnosed with AS two years ago.

Luckily I have a great doc that takes good care of me. The past two years have been a whirl wind of tests, medication, and worry. After trying enbrel and humira with no results, I was put on simponi. With in three weeks I was feeling much better, I recieved word on Friday that my insurance was changing and Simponi would no longer be covered and I had to switch to enbrel, humira, or cimzia... What a let down! So I go to my docs and he sends me home with 6 weeks worth of samples to see how it's going to work.

My current medications are.

Methotrexate
Folic acid
Prednisone
Indomethacin
Sulindac
And now cimzia

Does anyone else use. Cimzia and does it work for you?

Hello there and welcome to Kickas.

Hope you can find answer to your insurance issue and able to take the simponi again.

Regarding this list>


You are currently on all these meds and not seeing any help from them? If so... I would look dropping some of them as some have very bad side effects.

I had great success with azulfadine.

Best to you,

Tim

Hey Daniel, welcome!

I would also have to agree with Tim. If you're not seeing benefits from all of those medications, maybe you could think about coming off one or two of them? Might not be the best for your overall health to be on all of them at the same time? If it helps you to cope than I completely understand though.

Interesting that you had no results with Humira or Enbrel. How long were you on both of them for? I too have seen no results with either Humira or Enbrel after being on both of them for over 3 months independently. Very interesting that you had great relief on Simponi. My Rhuemy tells me that it would be unlikely for me to respond to other biologics now after failing Humira and Enbrel. We don't have Simponi approved over here in New Zealand, but hopefully in the future it will become an option. Seems a few people have had great results with it.

I've never understood how health insurance works in America. I just can't wrap my head around it, seems so complicated. Sorry you had to come off Simponi.. is there anyway you will be able to go back on in the future?

Good luck,

Seb

My doc a I had that very same discussion today... I am coming off of the methotrexate and folic acid... All it managed to do was make me sick, and drove my liver counts sky high.

Good luck with the new biologic, but do remember if it doesn't work (as well as the simponi) that there is an appeals process.

Insurance shouldn't stand in the way of our feeling better and having a functional less painful life.

My drug insurance company is banning all but Humira and Enbrel as the allowed injectable biologics. I'm thankful that Humira works so well for me, from the start. But if it loses its effectiveness, I'll fight to use whatever works. No way do I want to go back to the Hell I lived in before Humira.

That's horrible to have 2 not work then 1 work then have to stop it.. That is just horrible... hope cimzia works for you. Let us know..

It was a big blow I have been dealing with a lot lately, and that just added to the pile. I now have a appointment to go see a GI specialist, my doc thinks I may have Crohn's disease... What a wonderful life... Not to mention I have to deal daily with my PTSD from my army service...

Most of these biologic drug companies have foundations that allow you to get the medicine for free or nearly free if your insurance won't cover it. Here's a page with some information regarding Simponi. http://www.janssenaccessone.com/pages/simponi/patientassist/intro.jsp

No, I have not been on Cimzia but I have been in a similar situation on as many meds as you. For a few years I was on Methotrexate, Simponi, Prednisone, voltaren and folic acid. I didn't feel so good on all those meds, was sick a lot and ended up with high liver enzymes, which scared me into trying LDN. LDN is not hard on the liver and does not suppress the immune system but modulates it. So I went off Prednisone first, then I went off Methotrexate (against Rheumy advice). I was in hell with extra pain then but once I started LDN, I felt like a new person. The only issue with LDN is that you have to find a doc who will prescribe it. Now, I take LDN with Simponi and I am doing well. It is a shame your insurance won't cover Simponi since you were doing ok on it. It is possible you could get it covered again if you don't have success with other biologics if your Rheumy writes a letter to your insurance company explaining the nessicity for Simponi after failure to respond to other biologics.

Shari

Well,

I am pleased to report that I am starting to feel alitle better today. The Cimzia seems to be helping, and that just after the first boost dose, which is an injection into each thigh. I have to take two injections every two weeks for the first 6 weeks, then i will go to one injection every two weeks.

Also, it seems that Cimzia is a proven treatment for Crohn's Disease, which my Rheumy is almost certain I have.... I have an appoint with a GI tomorrow so we shall see. However, I was experiencing extreme IBD/IBS symptoms prior to taking the Cimzia injections last week, as of today most of the worst symptoms have gone away.

The Simponi did not help with my IBD/IBS symptons, so I am hoping that I continue to improve. If so I will just stick to the Cimzia... The only difference between the two is that my Simponi was an auto injector and the Cimzia is an actual syringe....