Spondylitis Association of America
Posted By: jp93 Biologics - 12/15/15 08:36 PM
I was on Enbrel for a year and finally it failed. I then went on Humira for a year and it's quit as well. My CRP levels are way high again and I'm in pain. While on Humira I also got Shingles and Appendicitis which are "rare" but possible side effects. Can't be certain Humira caused them but doc says likely and he's had other patients with the same issue. Neither was fun. Now my doctor suggests we start Remicade this week. I'm glad it's approved but I'm really struggling with this decision. I need a pep talk or something. Just feeling glum on this one. As soon as I feel better something seems to knock me down. I'm losing weight rapidly again which is exactly what happened last time my inflammation got out of control. I had a steroid shot a few weeks ago when I couldn't get out of bed. It's wearing off now and I'm feeling pretty stiff again. Especially in my SI joints again.
Posted By: Sheep1 Re: Biologics - 12/15/15 09:36 PM
All of the biologics are made differently and attack the TNF molecule in different ways- and so your experience on Remicade will be different than Enbrel and Humira- hard to predict if you'll have problems or not.

The biggest risk of being on the TNF inhibitors is infection. There is no right answer for everyone, but if I were choosing between steroids and TNF inhibitors, I would choose a new TNF inhibitor- repeated use of steroids can damage joints and organs if used long term.

Hard to tell if you would have gotten shingles or appendicitis anyway, or if the Humira contributed to it. 1 in 3 people in the US will have shingles in their lifetime, and if you're over 50, your risk is higher. However, having a compromised immune system (like on a TNF inhibitor) does increased risk.

Sorry, this may not help or not, I know these decisions are tricky. I'm only 8 weeks into Humira- it has changed my life, and if I get to where you are, I know decisions will be harder to make...

Best wishes to you!
Posted By: SouthernMoss Re: Biologics - 12/16/15 03:26 AM
I'm sorry, jp93. I know it's frustrating to go downhill with a treatment and have to start over again. Hang in there and let us know how things go with the Remicade.
Posted By: jp93 Re: Biologics - 12/16/15 06:20 AM
Glad Humira is working for you. I hope it stays working. I spent all night reading medical studies and efficacy comparisons of the different biologics. Bad idea. Ignorance is bliss sometimes. I was already pretty educated on them but I took it to far. Something about the infusion aspect and possible reaction is what's got me flustered. My doctor quoted roughly 10 percent of patients have a reaction and mostly it's very minor like tightening of the chest, shortness of breath, etc.. Seems I'm more worried about being able to tolerate it without incidence then the long term effects. Really it's both I worry about but the later won't happen if I can't get past the infusion.
Posted By: Sheep1 Re: Biologics - 12/16/15 07:08 AM
jp93- One thing about the infusion is that you will be with medical professionals during the infusion and they will be well able to take care of you immediately if you have a reaction, which is safer than doing injections or taking medication at home by ourselves.

I get allergy immunotherapy shots, and was scared when they told me that there is the possibility that at any time after a shot I may have a reaction. I am required to sit in the waiting room for 30 minutes after a shot to make sure I don't go into anaphylactic shock. The first half dozen shots, I would sit in the waiting room and just wait for my throat to close up, breathing to stop and a rash to show up. It didn't happen and now I've been getting shots for 2 years.

While I know allergy shots are not a biologic infusion, I do understand how frightening it can be knowing you may have a reaction. In hindsight I realize, if I were going to have a reaction, it's better to have one in a doctors office than at home.

Hopefully someone who is getting Remicade infusions will join in the conversation.
Posted By: WhiteCell Re: Biologics - 12/17/15 01:39 AM
I've been on Remicade since 2001. Like meds people are different and their response is always unique. If you are worried many doctors prescribe or patients take tylenol and benadryl to prevent any reaction. The important thing is the speed of infusion. check with the nurse to see how it is given. Centecor recommends

10 ml/hr for 15 minutes
20 ml/hr for 15 minutes
40 ml/hr for 15 minutes
80 ml/hr for 15 minutes
150 mil for 30 minutes
250 ml/hr until the infusion completes.

at first I had some jumpy anxiety but calming my breath prevented a panic. Remicade is given at 0 weeks 2 weeks and 6 weeks and every 6-8 weeks after depending upon your own experience. Many of us began feeling better about 2 weeks after the 2nd infusion.

Best of luck.
Posted By: jp93 Re: Biologics - 12/18/15 12:24 AM
Glad that Remicade has worked so long for you. That is encouraging to hear. I appreciate everyone's feedback.
Posted By: Banana Re: Biologics - 12/19/15 05:39 PM
I failed Enbrel and Humira, well they worked for a year and then "turned to water" seemingly over night.

After failing two, I had to go on MTX (injection less side effects) and then I was on Humira again for a year and Remicade for year and a half.

It can be frustrating but if they worked for a little while, that is a good sign. I have been in remission for years now on Actemra and Arava. It gradually losing effectiveness but nothing I want to give up yet.

Posted By: jp93 Re: Biologics - 12/20/15 01:00 AM
I went through with the infusion on Friday. No side effects as of yet (knock on wood). Did not have any reaction at the time of infusion. Very tired today but that's probably from taking Benadryl in the morning yesterday and screwing up my sleep schedule. Hopefully this works. I had in increase in SI joint pain for some reason after the infusion. Who knows though, could be from sitting for 3.5 hours.
Posted By: WhiteCell Re: Biologics - 12/20/15 04:41 PM
Happy for you. Now is the time to take a long walk in nature. Congrats on a win on your first step!
Posted By: Sheep1 Re: Biologics - 12/20/15 07:40 PM
jp93- glad to hear there was no reaction to the infusion. You got over the first hurdle.

I hope the Remicade helps!
Posted By: jp93 Re: Biologics - 01/21/16 05:35 AM
Thought I would update. It's been a month since starting Remicade. I'm a whole new person. Neither Humira or Enbrel had this effect on me. I now have zero fatigue and am able to exercise daily. I was able to jog on the beach last week for the first time in years. I'm not ready to swing a golf club just yet but I'm not counting it out. I've had two infusions at this point. I'm optimistic but I know it could end any day. Until then I'm going to live it up.
Posted By: Sheep1 Re: Biologics - 01/21/16 07:14 AM
jp93- Wow, that is amazing, at a month to have such a great response! I hope the Remicade keeps working for you, and yes, live it up and celebrate!!!!

And you may have heard that another biologic for AS and psoriatic arthritis just got approved- it attacks a different molecule than TNF like the others. So if Remicade stops working, you have another totally different type of medication to try!
Posted By: SouthernMoss Re: Biologics - 01/21/16 06:19 PM
Awesome!! Happy dance for jp93!
Posted By: Banana Re: Biologics - 01/26/16 04:11 PM
So happy to read this!!!! Isn't it amazing? So happy you are living the miracle.

Posted By: Adoptapom Re: Biologics - 01/26/16 04:43 PM
That's wonderful! I was on Remicade for years and it was hands down the best of all the ones I've been on. I was so upset when I was taken off of it after my second bout of optic neuritis. I'm left with just Cimzia to try now, as it sits in my refrigerator. But I'm nervous to start because I don't know anyone who has taken it before...
Posted By: jasonpaul Re: Biologics - 01/26/16 05:20 PM
I also failed Enbrel and Humira. Even a low dose Remicade wasn't cutting it. My Remicade was increased and I was given a short course of prednasone; that seemed to do the trick. I am off the predasone now. I seem to have less side effects on Remicade. With Humira I got virtigo and nausea, and my flares were bad. I also like Remicade because I hated giving myself a shot. I am keeping my fingers crossed for luck for the both of us
Posted By: Banana Re: Biologics - 01/27/16 05:13 PM
Adopta pom, if you failed Humira, you can try it again along with MTX or Arava. It worked several times again for me.

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