Starting Enbrel ... maybe

I had my rheumy appointment on Friday. The poor guy walked into the room, asked me how I was feeling, looked at me, then said, “Nevermind. You don’t have to answer that.” Apparently I looked that fabulous.

He’s not happy with my limited range of motion, the pain I’m in, etc. He’d come up with a plan, but upon learning of the testing I’m undergoing for possible high cortisol levels, he’s nixing the idea of low-dose prednisone. He says I could wait until I see the gastroenterologist and figure out my liver issues before starting Enbrel, but even if I get a diagnosis, my enzymes will still be high while we work out treatment for whatever’s wrong, if there’s even a treatment option available. He suggested the best course of action if we can manage to get my insurance company to go along with it is for me to take one of the biologics: Enbrel, Humira or Simponi. His original plan was to put me on one of these along with methotrexate for the best results, but the mtx is out due to elevated liver enzymes. We discussed the dangers vs. the benefits and the frequency with which the different meds are administered and decided on Enbrel injections once a week. I had a tuberculosis test done and got the all-clear to take the Enbrel. I’m still waiting to hear back as to whether or not my insurance will cover it.

Today I texted my endocrinologist to get her opinion on me starting Enbrel w/ the testing I’m having done and to hopefully find out the results of my cortisol test. Once we see how all that goes, if everything works out so that I can take the med, I figure out when to start the injections. Then I see my gastroenterologist to hopefully figure out what else is wrong with my liver. And if my cortisol levels are high, I have to deal with the testing to find out the cause of that as well.

So basically things are still up in the air until I figure out insurance and hear from my endocrinologist, but it looks like relief may be in my future soon. I hope.

Hi Nym,

I found Enbrel to be fantastic! It really helped with the pain and really gave my life back. I didn't have any side effects that I noticed, apart from a reaction at the injection site, which went away after a couple of days. So all in all a small price to pay for the relief it gave me.

However recently my Rheumatologist took me off Enbrel and put me on Simponi.

Good luck and hopefully, Enbrel will give you as much relief as it gave me.

Hi Nym - that’s too bad that you can’t take MTX, but glad to hear you’re getting on Enbrel! That’s great news! I know the biologics seem scary, but take it from someone who’s been on them for years, you’ll really eventually forget about it. I have come to realize the scarier notion is what my disease is capable of if it’s not stopped by these medications. Also, with all medications it’s important to keep in mind that even if ONE person had a certain reaction they have to report it, so that doesn’t mean it will happen to everyone or most of us.

I hope you get things sorted out soon.

Hi Nym - I’ve been taking Enbrel for 5 months now with no side effects at all, other than a little bit of a red rash at the injection site. I actually find the rash helpful so I remember where the next injection should go! The Enbrel has helped some - not as much as I’d hoped, but still, I have less severe bouts of pain/stiffness than I did in the past. I’ve been on MTX (I tell folks my doctor prescribes me meth!) since November 2010, again with virtually no side effects. I had a bit of stomach trouble with it at the start, but that went away after about 4 weeks. I hope you and your docs find the right mix of things to get you some relief.

Thanks for the encouragement! I’m still waiting to hear back from my endocrinologist - I’m going to call her office tomorrow if I don’t hear back. I’m trying to figure out the timing of when I’m going to start, as I seem to be the queen of side effects or adverse reactions and would like to take it on my husband’s day off. LOL We’re so busy, there just doesn’t seem to be a right time to risk me being out of commission. Oh, well, I guess I just need to pick a day and get it over with! :slight_smile:

One thing that seems to help me with any of the new medications is to be EXTREMELY well hydrated when I take it for the first time, and every time after that. If I’m not as hydrated I get more side effects. It makes sense since your liver has to process all of that and it’s a sponge. I also drink things with electrolytes in them like Smartwater (it has no sugar or calories) or Gatorade.

I'm glad to see your post, Hurblogger, on being well hydrated when taking the meds. I have found that especially with the biologics. In fact, with some of the extreme side effects of my current biologic, I have been GUZZLING the water the day before the shot. It definitely makes a difference!

Nym, I hope the Enbrel is as wonderful for you as it has been for a lot of the people on the forum! If you are worried about side effects, a lot of drs offices let you do the first injection in the office and then hang around for an hour or so to look for anything extreme. Other than that, I think floating away on too much drinking water :-) for an entire day before you take it is a great idea.

Thanks for the advice on hydration. I'm awesome at staying hydrated when I'm sitting at the computer, etc, but not so much when I'm doing stuff with the kids. Time to start carrying my stainless steel water bottle around with me again!!!

I got a call from Enbrel services today - my insurance will fully cover it! So now I have to pick a day to start it. Since I'm the queen of adverse reactions, I'm going to take it on a day when my husband is home. I was going to start on Saturday, but it's my son's 6th birthday party, so I think I'll wait until next week. My endocrinologist still hasn't called me back as well, and I do want to make sure it's not going to interfere w/ what she and my gastroenterologist are going to be doing (they're in the same practice).

Fantastic!!! Glad the insurance is taking care of it! Hope the other falls into place as well. Keep us posted!

Thanks, Dana!

I'm not starting yet. I have a gastroenterologist appointment on Monday which may be followed by a liver biopsy, so I've been advised to wait until I see what the gastroenterologist says.