Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Scared and broke

Had my 3rd visit to my rheumatologist today. Injections of 60mg Toradol and 60mg Kenalog have me feeling pretty good this afternoon and, for that, I am thankful.

However, he wants me to get an MRI to take a closer look at my SI joints AND chest x-rays and TB tests because he thinks I should start on Remicade.

I've read SOOOO many horror stories about the dangers and expense of Remicade that I'm very strongly considering declining treatment. I fear this may cost me my relationship with my rheumy and I'd hate for that to happen, but ...

I wonder how many others have been in exactly the same position I am right now pondering the exact same questions. Is it worth the risk? Is it worth the expense? As I've mentioned before, my pain is currently of the "yappy dog" variety, though this past weekend it bit me pretty darn hard for 3 days. Everything inside me is telling me to say no. Any constructive advice from those who have "been there, done that"?

Thanks.

Been there, done that. It was a very hard decision for me but I decided to go for it to see if I could have a better quality of life. The cost was intimidating to me too. The staff in my dr's office told me about Healthwell Foundation. I called them and they agreed over the phone to pick up my co-pay. They told me then if I could afford to go ahead and start it they would reimburse me. They were absolutely wonderful people.

I did start it. I had some problems with the first infusion and had to have some extra steroids but got through it. The 2nd was easier and then it got very easy. I guess my body had to decide to accept it. I took it for a year but I did not get any help from it and in fact got rather ill.

I would certainly try it again. I have done several things to keep going including a rather big spine surgery almost a year ago. I am scheduled for another CT Myleogram next week and possibly another surgery.

I think it is all a very personal decision and you have to weigh the pros and cons for yourself. I know I would not be happy if I didn't do everything I can to live the kind of life I hope to live.

Best wishes as you make this decision.

Read the post I made this morning about my one year anniversary on Humira.

I wish it had been offered to me sooner; maybe I wouldn't have so much damage to my SI joint now. All those years (12 to be exact) of horrible horrible inflammatory SI joint flares probably did the damage that I have now. When the flares first started, my SI joint was good in between the flares (and few months it took for the inflammation to settle down). A few years ago, the SI joint between kind of permanently "cranky"…see my post about Humira for the details….if I had Humira (or even the methylpred) years sooner, perhaps I wouldn't be in the boat I'm in today, with my SI joint (or my neck).

I had heard the horror stories, but too, I had heard the "it changed my life" stories as well. I decided to focus on the stories of hope instead of the stories of doom. We're all different, we all react differently.

I decided the largest risk was an allergic reaction, so I went with the Humira as its human based, though with remicade, one can take an antihistamine to prevent an allergic reaction. But that was only a concern for me because I have a lot of allergy issues. This though has not been a problem for me. And with Remicade, they do it in the doctors' office, so they are prepared in case.

Another fear I had was the effects wearing off. That can happen, but is most likely to happen if one needs to take a break from the biologic. A year later, and so far, so good.

Infection is maybe the most likely side effect, but if one is vigilant and doesn't take the biologic when sick then most people fair well. I have a strong immune system and my head colds have been no more often or worse on the biologic than before the biologic. I had one UTI before Humira and I've had one on Humira; the one before the Humira was worse. I do take LDN still and I do take vitamin C (500-1000 mg daily) per rheumy's orders. I also eat a healthy diet, drink plenty of water, get my exercise (mostly walking), and get good sleep now most of the time…all things that probably help me have a healthy immune system.

They also do my blood work to make sure my white cell counts are fine, etc. They were always borderline high prior to the biologic, now they are high normal.

The other risks seemed statistically small to me, so I haven't worried about them.

My stepfather won't take the enbrel for his crohn's, but then again the asacol works well for him. Though, seeing how well I've done on the Humira has shifted his mind a bit.

We all have to make the decision for ourselves.

Some people see results of biologics in days and that's great. I was on Humira, biweekly, for 5 months and noticed pretty well nothing so I stopped.
Others have tried 3-4 different biologics trying to get one that's a keeper.
As Sue said, we're all wired differently.

Good luck!

Toradol is not generally given for minor pain. Are you saying that your pain is of the "yappy dog" variety with the toradol and steroid injections, or that it is that minor before the injections?

I have taken Remicade for years (Enbrel and Humira before that) and it has allowed me to keep a job that I love, take care of my family, and volunteer with my community. My daughter is also on Remicade, and my son takes Humira. None of us have ever experienced negative side effects and we have all experienced significant control of the disease. With decent health insurance and the co-payment assistance program, the cost has been negligible.

I was on remicade but my Dr decided to put me on actemra because it has about an hour IV time and it worked just as good.

I have to be honest I havent been able to go for awhile because I owe my Dr so much money and I get in deeper each treatment so I have stopped for now to try and pay on some of it and in all honesty will probably have to just treat my symptoms with drugs...I feel so much better on my biologic but I dont guess it really matters

I hope you get it all figured out

Lisa

Hi, RBarnes:



Yes, with a qualifying be very very careful!



Not for me; antibiotics are much less expensive--but this option is not for everyone.

Good Luck, whatever You decide,
John

Hello there,

How you treat the AS is a personal decision, it is your body. My advice is to become very knowledgeable about AS and all the treatments. That is only way you will find they one that you feel is the best fit for you.

A lot of big decisions in life come with some apprehension, so your feelings are a bit natural.

Best to you on your decision.

Tim

I think Tim said it well.

By the time biologics were an option I had fused. Opted not to try them. Still woder pensively, what if?. I don't regret my choice but always wonder.

I wish Biologics were around when I was diagnosed because it might have slowed the beast down. I'm on Remicade and it does keep the Uveitis from coming back.