Firstly, I’d like to say as a newbie on here, that it has been wonderful to read all the positive words and support. You lot are absolutely inspiring, and I am really humbled and blessed to have found you all!
So I started on Benepali (a biosimilar to Enbrel) with weekly injections. I had 3, take them on Fridays. But last Friday I was told by rheumy not to take them due to an outbreak of coldsores (fever sores). Now today, I have been told I couldn’t take it as the sores are not quite healed up fully. And because I am having a camera down into my tummy on 17th and possibly some biopsies taken, I’ve been told I can’t restart the injections until 25th February.
I’ve started flaring even more today - both knees and feet are on fire and my hands are swollen and spongey. My left jaw is also starting to ache and get very tight so must be inflamed again too.
Anyone know how I can best ride this out ready for the biologics again?
On a plus note - at least I know for sure that the drugs must have been doing some good!
I was having the discussion with my rheumy, questioning how well Enbrel is working for me at this point. Well, I’ve been off it almost a month because I had and am still recovering from pericarditis. Guess what? It was working! I’ll finally be allowed to use it starting Monday, and I’m looking forward to getting back to mediocrity.
How am I riding it out? Poorly. I had a taper of steroids then ten days of a new to me NSAID. So that one can apparently cause the worst migraine ever for those predisposed to them. Guess who that is? Me! So I had my first ever visit to the ER for a migraine and now have a new rescue med. Since then I’ve just been sucking it up. Oh, and I’ve started acupuncture as well.
Oddly, I have blood tests next week for the first time since starting Benapali, and was getting concerned that something might be up with the tests that would force me to stop them. As you do. I’ve had a sinus problem since the start of the year - but so has most of the people I know. And I know that the Benapali can cause congestion, so it might be that. But it’s not bad enough to stop them. If that’s the worst side effect I get, than that’s fine!
Kipper - sorry you had to stop yours. If they stopped my drugs every time I got mouth ulcers, I would never be on them! I’ve had them ever since I was a kid. Perfectly normal for me to have them (although I have had less lately, oddly!)
When I had burning pain (neuropathy) icing it worked very well. Temporary, but that’s better than nothing. In fact, I would ice the bottoms of my feet at bedtime to stop the burning and they’d be good all night. The soft ice packs worked the best for me…
Glad you know the drugs were doing some good. Hopefully, you can be back on the Benepali soon!
Good luck with the camera and biopsies. Most people don’t have a problem swallowing that camera, and maybe it’s improved over the past 20 years, but I had to swallow that camera once and I swear it was the size of a whole walnut (in the shell). Even though I was on a med to forget the procedure, I distinctly remember gagging as they shoved that thing down my throat and as they pulled it back out. Other people I know who had the procedure don’t remember any of it…whatever you do, don’t look at that “walnut”!!!