Hi Amos. I started Humira in 2014 and had a few steroid injections in my backside to ameliorate relatively small flare ups over the next 2 years. Never needed another course of oral steroids though.
Haha, having a somewhat narrow conversational range is almost a PsA symptom in the first few years I reckon. I cringe to think of it now - there was no occasion which I didn’t ‘enhance’ by educating anyone & everyone within earshot about PsA.
Well I’ll put the cat amongst the pigeons now and say I rarely get flares as such. What I get is disease progression at times which doesn’t go away until a new med is tried. I don’t flare up and down like many people do. I don’t have a bad few days and then a good few days.
Right now my disease is being controlled really well on Cosentyx. I’ve got steady capacity and little pain. I’m able to do much of what I want to do. I’m not tired or fatigued. I do though continue to pace myself quite a lot. I don’t try and do too much. But month on month since around June I’m feeling just fine. So I started Cosentyx last November did astonishingly well through the loading doses of 5 weeks, then started to dip by about February until it picked up again in June. The dipping was what I call my disease not being well controlled. Then I was tired and fatigued and struggled with too much pain and lacked stamina and capacity. Right now for me is probably as good as it gets. I’m delighted with that too.
So @Amos, I think we’re all different as to how this disease can affect us. For me certainly I’ve experienced a DMARD and now a biologic having such a ‘constant effect.’ I’m really hoping this one lasts too.
When do you know when you get the real injector pen?
Thanks @Poo_therapy for sharing that detailed journey of yours, very helpful. Because I live in a rural area, the foam box with the Humira is sent by post as an over night delivery which should arrive at the post office today. I have to have a lesson with a nurse and be “approved” for future self injection. So I suspect that tomorrow will be my first shot. We are very thankful that the company that handles the distribution of Humira took into account our household income and is covering most of the deductible. That and our provincial health care coverage leaves us with a monthly cost of about the same as one petrol tank of gas for the car per month! From the rheumy to the pharmacy and everyone in between, the prompt professional service and care couldn’t be better!
I think with any long-term pain-related condition (arthritis, fybro, etc) there are flare-ups even when there is treatment going on. That even happens with very different conditions - for example, just because you have strong medication to sort out bad heartburn doesn’t mean you won’t get heartburn from time to time. And just because you take anti-depressants doesn’t mean your depression won’t flare up from time to time either. And just because you’re taking painkillers for toothache doesn’t mean that you wont get parts of the day where you feel the pain.
For the PsA, it doesn’t necessarily mean the meds aren’t working for the most part - and perhaps the flare ups we do get are less severe or shorter than they would be if we weren’t on biologics. But I tend to find I feel worse during damp weather, and stress can cause it too. I just try and console myself by thinking how bad they’d be without my pills, potions and injections!
3-2-1 CLICK! Count to 10, watch the window and…That’s it…Humira is in. Didn’t feel anything. Maybe they sent me a real placebo instead of the fake placebo auto inject pen. Time will tell. Thanks to all who “patiently” encouraged
through many questions, fears and flares. I am at peace with this route and trusting that Humira will have a degree of success. I’ll keep in touch.
Good luck. And don’t panic if the injection site bruises one week and not others. Most weeks I don’t get anything there, but other times I end up with a massive bruise that takes ages to go.
I did my second injection on Wednesday (a few days ago) This time I felt the Humira going in as a burning sort of acid feeling. But no bruising at all and the sensation was gone in a 1/2 hour. Considering I am in another flare, this stuff needs a lot more time. Feet, knees, shins and even muscle aches in both legs. Where is the “off” button? I don’t remember signing up for more pain!
Ugh, that’s disappointing, but hopefully it’ll pass and with more injections you’ll notice improvement. Don’t give up because it takes (unfortunately) months for some people.
Enbrel is still working well for me after 6 years. But, pains in my lower back and neck come and go. I, like so many of you “push the envelope” and lift things that I KNOW are too heavy and crank my neck too far. I don’t call those things flares. I don’t think I’ve had what could be called a flare since I started Enbrel.
I have more of a problem worrying about COVID lately. I’ve had a headache for several days now and am wondering what’s causing it! I’m sure it’s nothing, but every time I have a sniffle, sore throat or headache I can’t help but wonder is this COVID???
One thing that also happened this week. I FORGOT to take my Enbrel injection on Tuesday. Thursday I had some stiffness, but didn’t think much of it. Then Friday it was worse. In my shoulders and elbows…I realized it felt like a mild version of my PsA pain and then realized, WOW, I forgot my shot on Tuesday! So I took it immediately. I’ve had to hold my injection for over a week a couple times because of a virus, and I’ve never had the stiffness come back. So that was sort of unnerving.