Has anyone here stopped biologic treatment for personal reasons?
I’m still waiting on Cimza to arrive from the specialty pharmacy but I have a confession, I’ve been off enbrel for three weeks now and, besides the shingles, I feel pretty good. I haven’t had any knee pain. None. I was able to do some gardening, go for walks, and park days. There is some morning stiffness but nothing like before. Why the change? Was it the enbrel? Do I really have PsA? There are all the things I am asking myself and I need your help or advice. I know all about the long term effects, but what if those effects don’t exist?
Oh Amielynn, your questions sound like heavy-duty philosophy! Gosh, I don’t know … but it sounds like you may be in a remission right now, you lucky lady!
I really think you need to ask your rheumatologist about this. Maybe the remission will last. Wouldn’t that be great?
Let us know what the rheumie says.
Or is your body so busy dealing with an actual threat that your system is doing fairly well. It would certainly be lovely if it were a true remission. Talk to your rheumy about your thoughts on this.
You’re not alone in having these thoughts. I have them too & I don’t squash them but so far I’ve always come back to the reality that I do have PsA and I do need the meds. PsA is weird and for me the good days & the bad ones can be very random and such a complete contrast that any steady way of summing up the disease is almost impossible.
I think Stoney may be onto something. But if somehow or other it turns out that you don’t need meds / are in remission then we’ll throw a party here I’m sure!
Thanks ladies. I know, I am all deep thoughts around here.
I was thinking back to when I switched from Stalara to Enbrel it was awful. I got really sick and had to wait for months for the Enbrel to kick in. Now with leaving Enbrel I had to stop abruptly while the shingles heals. I think Stoney has a good point with the immune system threat of the shingles though. I am interested to see what happens as the shingles disappears.
Another note, I haven’t consumed alcohol in 3 weeks as well. The same time I have been off Enbrel. I stopped for the “rash infection” at the time and now with shingles. I might probe that idea by having a drink after the shingles heals and test that theory.
Yesterday I didn’t take any pain meds, tramadol, IBU or nerve pain meds (for the shingles). I was extra tired but I did pretty well. We will see for today.
@Stoney - I read an article recently (and I’m going to super simplify and laymanify this - just laying the disclaimer out) on PTSD that explained it as a kind of overstimulation/reaction of your para(?)sympathetic nervous system. When actually faced with the threats of, for example, a war zone your nervous system amps up to protect you. This serves you well there, but when you return, for some people, it doesn’t go back to normal, thus PTSD - your nervous system is still stuck in the war zone.
With all the research on auto-immune diseases pointing towards a joint genetic component and environmental trigger it kind of reminds me of that - your immune system ramps up to fight whatever virus it is that triggers the PsA (strep, shingles, etc), but it never calms down. It makes sense then, that when faced with an actual infection that your immune system would then be busy fighting that real threat and leave the rest of you alone - thus meaning your PsA symptoms would calm down.
I don’t know if it works outside the theory - but it’s a useful way of thinking about it. (I told my girl friend that my immune system was basically Animal from the Muppets after we discussed this the other day, lol).
@amielynn38 - I’d be interested to know if @Stoney and I’s theory holds or not - though for your sake I hope you get to enjoy a bit of remission. Don’t know if I’d stop the treatment though but I’m stuck in a flare so that’s kind of where my mind is at the moment. I do sympathize with the tired of meds bit though - man it’s such work just obtaining the damn stuff, let alone injecting it!
@amielynn38 I completely get it. I’ve always wondered with long-term meds if stopping them would be noticeable. I’ve always thought that if you could have some nice calm 6 months in your life to find a baseline and then figure out what was helping ans what wasn’t would be an interesting experiment. But life never seems to give me that uninterrupted calm six months spell. So this will have to remain a thought experiment for me!
The thing is we usually switch meds when things aren’t working well so when we’re off them is when we’re at our worst. Typically when things are rocking and rolling we don’t stop the meds. Could you still be benefiting from a backlog of the meds in your system??
@SubliminalFlicker I think you’re on to something with the Muppet analogy!
@SubliminalFlicker, I’ve thought a lot about your PTSD article and theory. It makes a lot of sense. you and @Stoney might be onto something. The shingles is almost healed and I am waiting to see what happens after my immune system is through with it.
@janeatiu, that is what I thought as well. I was fearful of stopping the Enbrel because of the shingles but I was shocked to see I felt fine. When I switched from Stelara to Enbrel I was at my worst! Awful, lots of pain. I’m not sure if there is a back log of medication since the half life is so short lived, but it might be more of a lack of inflammation build up. I have noticed a return to my knee/ lower leg pain but not as painful as before. I want to see if the pain increases over the rest of the week. I still have not started the Cimzia, nor have I taken any IBU or tramadol.
UPDATE:
Hello all! It’s been 6 weeks and I wanted to give everyone an update. Things are still great! I haven’t started the Cimzia and I have stopped taking all my other medications. Even IBU! I still have knee pain but I have come to the conclusion it is due to my flat feet. With exercise and new insoles, I am doing great! I do have to wear shoes all day long but I’ll take that over the pain.
I even stopped my nigh time medications and I have been sleeping much better.
Hopefully this will continue. I do have a follow up appointment with rheumy in two months, so I’ll tell him my conclusions then.
