Too Many (for AS patients)

Alright. This is for AS patients who are still actively trying to figure out if they’re on the right biologic. Those who are new and not sure of what they’re experiencing is normal, and don’t know if they’re the only ones dealing with random issues.

This is my bit to speak for all the patients who write in groups that the medication is working BUT the side effects are unsustainable. Here’s why it’s hard for ME. This post is for all the people who wonder what actually CAN happen?

So, Enbrel is not going to leave me unmarked -internally. It’s a lot going on and I have not been telling anyone the extent to which it’s impacting me.

Damned if you do, extra damned if you don’t.

Fatigue. AS already is a disease marked with extreme exhaustion. The day after my injection, I suffered a lot but today that aspect is gone.

Just know that some problems you might have had before starting Enbrel (or any other biologic) can spring up worse and more often. I’ve had a problem that began 24 years ago and was bad enough for me to get help many times, but no real answer except to be told it’s going to stay with me forever and will keep flaring up, and to be told only total deep surgical excision would get rid of the problem. (Hint- staphylococcus bacteria is sometimes impossible to get rid of)

Just know that sinusitis can do weird things when you have Enbrel in your system. Like your nose pouring out what might as well be water uncontrollably.

Just know that you can have gastrointestinal problems that also last days. Think the opposite of the IBS I have. (Mine is constilation dominant.)

I don’t know, warriors. They say side effects get worse the more you have it in you. I don’t know what that will look like for me. I don’t know if I’ll settle down instead. I’d like to give this a real chance to work.

Back to the staph issue and what the dermatologist said about deep surgery…It would mean I’d also need reconstructive surgery and skin grafts given how widespread the problem is.🥹 And you have to quit your biologic if you’re due to have surgery. So even if I was contemplating it, stopping AGAIN before Ive found out it if it works is not something I’d do unless it’s a matter of life and death or permanent disability. We need to know if this is even the right treatment.

It’s one thing to be told, “I had to try so many meds before I could find one that didn’t impact me” to actually live it. How bad is bad enough to try something else? And now I can understand the patient whose rheumy changed her meds because of her side effects, a change which which made her upset as she felt the biologic was helping the AS so would have preferred to weather the side effect stork and control the Azs. Uncontrolled AS is awful. Worse (for us) than the side effects sometimes. But the side effects can kill. And maybe the rheumy knew what was ahead…

And so… we walk on blindly. Nobody who has lived our specifics, nobody we tell our specifics to. Just hoping for a break.

That’s AS reality when your disease is not yet under control and you’re still new to a biologic.

On the positive side, my skin hasn’t reacted to the injection. No site reactions. Some people have to quit because of them as they spread and become thick, permanent and get painful and… So though I almost forgot to add it in, it’s important to note. At least that’s not a possibility I’m dealing with.