You are correct, Seenie. I have new hope!
I don’t mean to rude or disappoint, but Otezla failed to meet primary end point in patients with AS. The drug manufacturer is retrying the trial just like they did with PsA, but honestly… The side effects of biologics aren’t as bad as advertised.
Seenie - I remember reading an article here that linked depression with inflammation? I think Sybil had posted it... Since depression, along with sleep problems, have been a lifelong challenge for me, and from what I gather for a lot of people on this site, I'd say why not? I mean, come on, how many different problems can one have? They MUST be related somehow... I wouldn't be surprised if more systemic diseases were discovered in the future...
Grandma J - please don't ever feel bad for feeling good :) Today, after many months, I ran just for a few steps while I was walking with my bf even though my right foot is still giving me a hard time, and it was the best feeling in the world! A week ago I wouldn't dare think about running. I wonder if the antiinflammatory + muscle relaxer (which also contains pain killers) + sleeping pills have just made the pain go away, made me numb or something. But I don't really care :D
Tired of pain - I hope you find relief soon... I realized that we take feeling "normal" granted until we don't even have that. Running for a few steps, feeling pain in only one or two spots, actually understanding what you read, being able to sleep... I'm actually feeling happy-ish (!), and that's despite a still sore SI and foot. Just being able to function seems like a dream...
Yes, LL, there have been a few articles like that, but recognizing inflammation as a cause of depression isn’t something that has gained wide acceptance. YET. I’m convinced that it will.
mataribot, you’re not being rude, nor are you a Danny Downer. Otezla is fairly new, and its track record is still being established. For AS, I believe you are right. Don’t know what Otezla’s success rate is with PsA. (Tntlamb does, but he’s busy elsewhere right now.) That said, I have heard some anecdotal reports of its helping. I’ve also heard of people having to quit because of the gastric side effects. And speaking of side effects, I always roll my eyes when people talk about the potential SEs of biologics. When I asked my rheum about them, he shrugged and said “not much really”. Sure, the patient info reads just as scary as aspirin, but I can’t remember anyone here talking about side effects, other than site reactions, which usually disappear after a while. I’ve heard of some people having nasty adverse reactions, but then that can and does happen with almost all drugs. (If we want a discussion about side effects, let’s talk about MTX and leflunomide!) But the biologics tend two work or they don’t. If one doesn’t, it’s on to the next. The worst side effect of biologics is what they do to your bank account.
LL--we wouldn't exile you. We believe in the mindfulness adage represented below. So, you are here which is right where you're supposed to be!
I just want to add my thoughts and experiences about side-effects to medications. For some reason I seem to be a walking talking model for side effects to most of the DMARDS (methotrexate, leflunomide and most recently sulfasalazine), I can't take codeine or associated pain relief, anti-spasmodics like hyoscine, giving me anasthesia for steroid injections or dental work is a nightmare due to reactions to prilocaine and benzocaine (oh yes I remember now, benzocaine is also in some personal care creams so I can't begin to describe what I went through using one of these products for a mild irritation 'down below'). The latest addition to the 'do not take list' is a diuretic. And I'm not even going near the epic list of things that drive my skin nuts!
But the one set of medications that I have no problem with, not one little teensy weensy itsy bitsy hint of an issue, not even a site reaction (amazing considering my sensitive skin) are biologics. So far I've had adalimumab (Humira) and golimumab (Simponi). Simponi and I are now best friends (hopefully 'forever'), this is the longest relationship I've had with any PsA treatment. In efficacy terms it's not perfect but because of my DMARD issues it looks like I will be taking it as mono-therapy for as long as it continues to help.
As Seenie says if you read the patient information sheet for any medication, even the otc stuff like aspirin, paracetamol/tylenol, ibuprofen, diclofenac, anti-histamines, indigestion relief, cold and flu treatments ..... you name it ...... they all have potential side effects. Most of us pop these meds without even taking the patient information out the box.
So anything we put in our body by any delivery method has the potential to do harm in some form from the mild to the fatal. For me this is why I try to be informed about my options, I read, I listen to my doctors, I try to understand the potential benefits vs any risk I might be taking and then my final check is to ask myself if I really need to take it at all? If my ailment is tolerable and transitory I prefer to avoid any medication but the pendulum swings the other way when I'm in pain, throwing up or feel ill enough to take to my bed.
If my PsA was mild and non-progressive I wouldn't have been anywhere near any of this stuff (maybe just the odd paracetamol/tylenol or ibuprofen) but it isn't. In the three + years since my diagnosis I've gone from pain in one toe to ...... oh well that's another list that is way too long to bore you all with. I am alot more worried about what this disease is doing to me and my life than I am making an informed decision to take a medication that is proving, unlike all others, to help me and unlike all others, without any side-effects. Biologics get my vote.
Informed decision. It's all anyone can do. Fear may only be 'false expectation appearing real' (from: Susan Jeffers 'Feel the Fear and Do It Anyway').
Seenie said:
Yes, LL, there have been a few articles like that, but recognizing inflammation as a cause of depression isn't something that has gained wide acceptance. YET. I'm convinced that it will.
mataribot, you're not being rude, nor are you a Danny Downer. Otezla is fairly new, and its track record is still being established. For AS, I believe you are right. Don't know what Otezla's success rate is with PsA. (Tntlamb does, but he's busy elsewhere right now.) That said, I have heard some anecdotal reports of its helping. I've also heard of people having to quit because of the gastric side effects. And speaking of side effects, I always roll my eyes when people talk about the potential SEs of biologics. When I asked my rheum about them, he shrugged and said "not much really". Sure, the patient info reads just as scary as aspirin, but I can't remember anyone here talking about side effects, other than site reactions, which usually disappear after a while. I've heard of some people having nasty adverse reactions, but then that can and does happen with almost all drugs. (If we want a discussion about side effects, let's talk about MTX and leflunomide!) But the biologics tend two work or they don't. If one doesn't, it's on to the next. The worst side effect of biologics is what they do to your bank account.
I'm with you, Jules. I was shocked at how well and quickly my body accepted a biologic (Enbrel). I had stressed out for several years because I thought for sure there would be a horrible reaction. At this point, I'm more worried about not getting Enbrel for some reason, or that it'll stop working because it makes me feel so much better. I want you to know, LL, that if it ever comes to a biologic you don't need to fear it as much as some of the other commonly used meds.