As some of you know, my first few doses of Enbrel 6.5 weeks ago were amazingly effective-which was a shocker to me because I had worried it wouldn't work at all or I'd have to deal with serious SEs. I have to admit, though, that starting at about the 4th week of 2 shots/week the effectiveness started to fizzle out for the PsA, although my psoriasis actually started improving.
I'm hoping this is just my body adjusting. I haven't had the injection site redness from the last three shots, but my neck still hurts (that had started before I started Enbrel) SI joint is so inflamed it's driving me nuts, and the neuropathy comes and goes in my feet. None of this pain is 100% of the time, but today, for instance, my SI joint was the only thing really bothering me-well, that and the pain going down my leg it caused, and the weakness in my legs.
Is that how it is being on a biologic? I feel like it'll never again be like those first couple of weeks when I felt almost normal. From the discussions I've noticed a lot of you have taken many different biologics. I was hoping Enbrel would continue to work for me-and maybe it will--maybe it's just going to be those ups and downs all the time.
Biologics typically plateau around 4 to 6 months mark, so it's not uncommon to see flares etc. I keep reading these stories about how people have had instant results for psoriasis. It never happened for me and it typically the better part of a year to somewhat happy. While being plaque free, I am certainly not inverse free. My nails have also flared up recently. If you absolutely can't manage your psoriasis (creams) you can always add MTX to speed the process up and then remove it. I don't recommend using MTX if it can be avoided, but you can't stand the psoriasis...
I'll just have to be patient. At about week 5 I started noticing improvement of my psoriasis, but that could also be partly the result of a lot of sun exposure--I'm quite tan right now. I'm just worried about my SI and the pain it's causing me--I'm sure this will pass. I've had it before.
mataribot said:
Biologics typically plateau around 4 to 6 months mark, so it's not uncommon to see flares etc. I keep reading these stories about how people have had instant results for psoriasis. It never happened for me and it typically the better part of a year to somewhat happy. While being plaque free, I am certainly not inverse free. My nails have also flared up recently. If you absolutely can't manage your psoriasis (creams) you can always add MTX to speed the process up and then remove it. I don't recommend using MTX if it can be avoided, but you can't stand the psoriasis...
Hi Sybil,
That wouldn't be me--I've avoided drugs....never had any prescription pain meds, refused Sulfasalazine. Enbrel is really the first thing I've taken for PsA. I did take small dose of Nortriptyline for the neuropathy a few years ago, but my docs know I'm not seeing them to ask for meds. (Oh, yeah, there was prednisone bursts 3 times over about 15 years--but 2 times were for asthma; and of course the topicals for psoriasis.) I have given a lot of the natural remedies short trials, but none of them worked for me--except COq10.
I will be patient--it was nice feeling so good for a few weeks--I was on top of the world! I've tolerated a ton more pain than what's ailing me now over my adult lifetime-which spans 40 years (give or take a few, depending on everyones interpretation of adult) and I need to look at the big picture.
For me, the older I get, the more pain slows me down, and I'm not near ready to accept slowing down--isn't it a challenge when your brain is saying you're 30, but your body is saying you're 80?
sybil said:
I really get the impression that we have to start thinking differently while taking these drugs. I seem to recall that you've had a bit more experience with drugs than I have (that doesn't sound quite like I meant it to!) but certainly before PsA I expected very specific and speedy results from any drugs I did take. Antibiotics generally did deal with infections within two weeks, if painkillers were going to work it would happen within a few hours and so on. Biologics .... a different ball game I think.
I'd imagine that the 6th week mark isn't the time to judge Enbrel's effectiveness. But I realise that 6 weeks can be a long time in PsA terms and that a short-lived improvement muddies the waters. I think you're going to have to hunker down and wait a bit longer. Here in the UK we get 12 weeks to show some improvement on biologics and if that doesn't happen we can't continue. Most of us would like that trial period extended I think, but there must be some rationale behind that timescale. If it could be shortened, it would be I bet!
Those first few weeks were probably not typical. If Enbrel is working for you, you should expect to see slow and steady improvement over the first 4-6 months. You may never feel perfect. Among other things, you may have damage, and there are age related issues as well.
At my visit 4 months after starting Enbrel, it was very clear that it's working well. A lot of the big joint pain was dulled or gone, and I did not have the flare that I have had every single spring. I don't feel awesome, which I have to say I was hoping for. But if disease progression is seriously slowed, and I'm feeling good enough, so be it.
With both Enbrel and Humira, I have found that there are ups and downs that are just part of the territory. I usually refer to these as "underlying flares". By that, I mean that the way I percieve the disease and the way biologics work, my immune system is still off doing the same nasty stuff it was before I was on Biologics, but the Enbrel or Humira seeks out those extra TNF and neutralises them, so I don't get all the damage and symptoms, but my immune system is still dysfunctioning that same way any other person's with PsA is (after all, the TNF the biologics are neutralising is just a part of the chain of events - it doesn't stop the source of the immune dysfunction).
So because my immune system is still off doing its weird PsA thing - I still get flares, I just feel a bit stiff, a bit sore, and a bit off, instead of them laying me out in bed for days. Still a pretty darn good result I reckon :)
Hi stoney, I know... My rheumy told me the osteo damage I have will continue, so I don't expect to ever feel "perfect". But, even tho my body had an unusually quick reaction to Enbrel, it was definitely real. My thought is, why shouldn't it work right away? It's the same dose every time and I don't think it's something that has to build up in your system in order to work. And I was such a doubter and worried I'd get SEs, that if my mind was going to trick me into any reaction, I would have had multiple SEs and wouldn't have had such quick relief. My inflammation was widespread, it was fatigue and weakness as much as aches and pains. My one sausage finger went almost back to normal very quickly-that is real. I think the ill feeling that went away so fast took me so by surprise it lifted my spirits and I overdid everything. After a couple weeks it started catching up with me and reminded me I'll probably never be perfect. But, that's okay. I just realized today my arm doesn't hurt from carrying my purse anymore!
Stoney said:
Those first few weeks were probably not typical. If Enbrel is working for you, you should expect to see slow and steady improvement over the first 4-6 months. You may never feel perfect. Among other things, you may have damage, and there are age related issues as well.
At my visit 4 months after starting Enbrel, it was very clear that it's working well. A lot of the big joint pain was dulled or gone, and I did not have the flare that I have had every single spring. I don't feel awesome, which I have to say I was hoping for. But if disease progression is seriously slowed, and I'm feeling good enough, so be it.