Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Allergic reaction after 34th infusion

HI Lisa,

It's been too long, hasn't it? I've thought of you all here, and dropped in to check on things, but hadn't posted til now. Lots of new faces!

I was wondering also why now..maybe it's like Mig suggested, antibodies to the remi? I get my infusions every 6 weeks, that's all my insurance will pay for. My husbands work is actually changing insurances come July 1, but I think my benefits will be the same. I did't take the regular medicare when my ssd was approved, because I was covered by his insurance and did't want to rock the boat.

How have you been? It sounds like you are doing well on the remi. I hope all the kids and grankids are well? Hugs, Wanda

Hi Nonnie,

I must admit the biologics scare me partly because of the risk of allergic reactions. We are a very allergic family. My son was rushed into hospital on new year's eve because his throat was closing up and he hadn't taken anything obvious. Maybe just ate cooked apples which he's suspicious he's allergic to.

34 infusions is pretty good though isn't it? How many years did that get you through? And did it eliminate all your symptoms?

Hi Wendy, That was for four years. It hasn't helped as much lately. One thing I had to get used to at first was that it didn't do anything for damage already done. Or pain caused by something else, for instance nerve pain. Or bad discs. It did miracles for my uveitis though, which is a good plus. It was something I really looked forward to, because I always got a boost afterwards. Lately the boost didn't last as long.

One thing that it has done for me emotionally is to let me see other people that have some of the same problems I do. There weren't very many with AS - most had RA. But the pain is the same and the copings are pretty much the same. It was a good support, which I will miss if I go to injections. Of course, whichever is the best for me physically I think is the best to go with, but that support was one aspect of the treatment I hadn't figured on when I started it.

That's too bad about your family's allergies. We have some allergies in mine also. It 's a big decision to make to go on a biologic, and probably everyone is nervous at first. Then I got used to it and the good boost, but now......it may be time to move on to something else. Of course, there's no guarantee that it will be good for me or that I won't have a reaction to it also.

Are you thinking of going on a biologic?

Wanda

Hi Wanda,

I'm on methotrexate right now, along with prednisone and celebrex, and the combo is working although I hope to get off prednisone. I hope to avoid biologics but if the mtx won't work by itself (without long term use of pred and celebrex) then I may be looking at one. I have RA not AS.

Have you thought which you'll consider?

Not seriously thought about it yet, but it seems like a lot of people have been helped by Enbrel, here on kickas. I really don't want to go on one of the newer ones until they have been around longer. I'm going to go back through some of the posts here and see what looks promising. I don't know much about Humira.

My anti-inflammatory right now is diclofenac(voltaren). I'm on methotrexate(injection) also. I dread doing it every week. It still makes me nauseous. The phenergan helped for a while, but I'm probably building a tolerance to it(the phenergan) because it doesn't work as well as it did. Then I worry about my liver too. My nephew is on the waiting list right now for a new liver.

Are you getting your liver tested regularly? I have to get monthly tests. Sorry to hear about your nephew. Does he have something similar that's caused liver damage?

They check mine every 6 weeks when I get an infusion. My nephew has gout, I don't know what kind of med he's on, but it's probably the med that caused it.

Sorry to hear that. I'm glad you get yours checked regularly.

Hi Wanda, I had heard Simponi might be available by infusion. That might have changed, tho.

I'm actually not finding the injections too difficult, especially using the autoinjector. The Enbrel seems to work slightly differently. But it also takes several months to feel the full effect. That said, I'm still better off than I was during the last few months of Remicade for the most part.

I knwo what you mean about going with the newer ones. I could have had Simponi, but my rheumy and I talked about it and we decided to wait a bit.

I haven't had a lick of iritis on the Enbrel yet, touch wood.

I'm in pre-production for my next show right now. And still doing my dance classes as well!

Warm hugs,

Wanda / Kat,
A young man in our church is getting simponi by injection.

He has a new enthusiasm!!!!!!
Wanda, I hope things get better for ya.