I’ve been on Enbrel for eight years, and it’s my first biologic. I’ve been questioning it for awhile. After the hardware removal surgery and covid, I was on steroids for a bit because of the breathing problems. When I finished them, I had an awful flare. All my large joints hurt, and my si joints too. I saw my rheumy and she decided to put me on a steroid taper. I had a fabulous response, until I was done four or five weeks later. It started to come back, including new joints. Email in to the rheumy, new steroid taper but staying on 5mg until she can fit me in next month.
I think the thinking was to see if the prednisone would quiet down the post covid stuff and allow the biologic to work. It’s not working, so I’m sure we’ll be talking about a change.
Honestly I’m nervous, but I’ve done the reading, and I’m comfortable with the 5mg of daily prednisone until the next biologic takes overs. I’m hoping to avoid methotrexate as an add in, but recognize that it may be necessary. If that’s the case, I’m going straight to injections. I took the pills for 6 months and it was pretty miserable on my belly. I’ll see the rheumy in mid March, and see what her thoughts are. This is a new rheumy as of a year ago when my last one retired, but she’s been really great so far, so at least I don’t have that to worry about.
So sorry to hear this @Stoney! You have many things that have been going on and likely are best to know if it is actually a PsA flare or other. I have a few friends who have had Covid (without autoimmune issues) and months later they both still complain of aching joints…sort of flu like. Perhaps the Enbrel is doing its thing on the PsA but is ineffective if it is Covid related? I’m still having a bad time of being in a trough in which the Humira effects (if there were any) are fading out but the Rinvoq not fading in and I’m probably in as much pain as I have been in the last 3 years. Because I didn’t hit a home run with the Humira and feeling miserable, I have come close to just going on low dose prednisone and using an nsaid as needed. If I didn’t trust my rheumy, that would be my choice right now. My GP said that she has many long term patients with RA who have remained on less than 10 mg prednisone every second day and are doing well with minimal side effects. But people like yourself have kept me hoping in the biologics. I’m still on 20 mg Mtx pills…I suppose it is doing something in the background. Crazy when you think of it…after all you have been through, prednisone comes crawling back to make friends again! Thinking of you and all the best!
Thanks Amos. The funny thing is that the covid didn’t cause me any joint pain at all. The joint pain didn’t start until after I had finished the round of steroids for my lungs. I think my body just had too much and is done with the end roll, but I guess we’ll see what happens.
I’m sorry it has not been smooth sailing for you. I’m hoping to have good luck with the next one as well whether it’s now or at some points in the further away future. I will say that I am very glad that there are so many traces available now. Even 12 or 13 years ago when I first did the research on this there were not a lot of options.
@Stoney Eight years on the same biologic seems like a good run though really doesn’t it? And I’m sure the immune nonsense of Covid confused things for enbrel. Pred of course always causes its own issues of ‘kickback’ afterwards too. Or it did for me. And I always felt that confused issues too. And just thinking of all the foot issues you’ve endured on top, imagine what your immune system thought of all that? A new fresh start with a new biologic does seem awfully sensible. What are your thoughts on which one? I’d probably be wanting to leave the anti-TNFa ones behind and move up the more speciliased scale.
As you say - now there is quite a lot of choice. That does feel better by far.
And @Amos I so hope Rinvoq starts its stuff soon. It’s so miserable waiting. My understanding of these new JAK inhibitors is that they work faster too. What has your rheumy said about that?
The rheumy is as excited and hopeful about Rinvoq as anything that he has seen yet. He doesn’t like giving timelines but seems confident that I will experience signs of relief within four weeks as that has been his patient experience. Stress is always rough with PsA and the first shingles shot a few weeks ago really hit me hard. When you think of it, our body chemistry gets a good shaking up with the meds, fighting everyday viruses, jabs and steroids, new viruses and meds adjusted. We really have a lot going on inside! It will be wonderful to have my system settle into a happy groove. This constant high level of pain is kicking up the adrenalin which of course affects sleep. I would love to sleep for 5 -6 hours without shifting 10 times! We press on…I’m learning that I really don’t have to make noises every time I hurt…it’s better for my marriage! (“must you groan and comment every time you cross the floor”!!). She makes good sense…again.
I was in the same position last year @Stoney … just knew things weren’t “right” any more with Simponi (golimumab) after nearly 7 years. So I had lots of notes and photos when I had my rheumatology review with my lead consultant in December and we agreed it was time to switch. As Simponi was my second anti-tnf (I’d failed Humira way back when) she felt that going for an interleukin would be a good choice and we agreed on Cosentyx (sekukinumab). Yesterday I injected the last loading dose and, so far, so good And I’m still doing it as mono-therapy, no traditional DMARDS alongside.
Was a bit scary facing making the change but I know with PsA we have to keep marching forward. Good luck, you’ll be fine and make the right choices with your doc.
That’s great! This was my first tnf inhibitor, so I don’t know if my rheumy will try another one, or move to a different category. Mono-therapy sounds perfect.
Stoney, it sure has been a tough 12 months on your body. It’s great you got such a good run out of Enbrel, and with so many events that might trigger a change to your immune system in the last 12 months, I guess it is not that surprising, and I certainly wouldn’t take it as a sign there is will be problems with future biologics or you’ll need more than monotherapy.
So sorry for your troubles. Don’t be afraid if you are switched to a different biological. It’s sometimes necessary. Plus the prednisone may very well calm things down til your visit.
I saw my rheumatologist earlier today. I’ll stay on the low dose prednisone for the moment and she’s putting in the papers for me to switch to Humors. It’s been seven years on Enbrel so it’s been a good run.
Best of luck with it. Dare I say this but it didn’t like me. I started off on an biosimilar to Enbrel and then was put on a biosimilar to Humira. I lasted a mere 8 weeks on it. But I think my experience with it was very unusual, it just plain and simply didn’t like me.But it certainly loves loads of people and works well for them so there is no reason why you won’t be one of them.
Yup, Humira is a good solid med with a long history. Though Enbrel worked for my arthritis well, I switched to Humira for my tummy troubles. I feel like I got a good run out of it, though I just stayed on it longer than I should have.
I think most of us do that. It’s hard switching when something has worked - even for a short time. I’m about to stop Stelara (except this time the “switch” is to remove a piece of my bowel), and even fourth time around, I think I hung on for a few months too long - though of course part of the difficulty is that my arthritis is still pretty wonderful, it’s just not working for the gut bit.
I so hope Humira does well for you, it was slower for me than Enbrel to get started but good once it got going. Make sure you let us know how you go .
That’s good to know that you had a slow start with Humira. I think it was definitely too long, but it’s a tough decision. Covid and it’s aftermath really accelerated the decision.
(“must you groan and comment every time you cross the floor”!!). She makes good sense…again.
And I’m still doing it as mono-therapy, no traditional DMARDS alongside.