I've been really itchy lately, and have been telling myself it's the dry winter air that's causing this. My fingers are stiff, too, but not swollen. I noticed yesterday a few small patches of psoriasis on my scalp, so I used MG217 shampoo this morning--the first time I've used it in almost 5 months! Is it normal to have minor flares of psoriasis or PsA even while the biologic seems to be working? I'm wondering if this is just a temporary thing or if it's the beginning of the end of Enbrel for me.
I still have a few extra (3 I think) injections in my fridge from when I stopped injecting twice a week one month early. Would taking two injections a week for two to three weeks give the Enbrel a boost, or if it's fizzling out is there no hope for it anymore? It's been such an amazing near "cure" for my psoriasis and PsA, it would be disappointing if it totally poops out now.
GrandmaJ
it is completely normal to have some waxing and waning of your disease and that includes your psoriasis. Just because you have a little extra P for a while or that you have a few more joints inflamed than normal doesn't mean that your biologic is crapping out on you.
We all tend to be hyper-vigilant about our bodies and our symptoms. We look for warning signs, try to detect changes and then we hypothesize about what's going on... While it's not a bad idea to pay attention to things and to keep a list of oddities that have happened between rheumy appointments (you know I always take my guy photos from my "strange swollen body parts" file) try to focus on the long term rather than the short term.
A little extra P or extra swelling could be because your body is working hard at fighting off something unrelated to your disease. You could be feeling a little more stressed than usual, etc. But think about those long term markers. Are you, overall, doing OK? About the same as usual? Even if _today_ is a bit cruddy, how are you doing overall? It's only if those long term markers of your disease begin to shift that you should start to engage your rheumatologist.
Lastly, need I remind you? WINTER. It is so incredibly hard on our already over-taxed bodies. And you're up there in the frozen tundra. Your body has to work so hard just to keep you warm on your way to work! So, I would say that it is almost expected that you would have some really tough days in the winter where your P flares up and your joints ache like the dickens.
Hope this helps!
I agree with Janeatiu as my experience is that my P and PsA wax and wane. I've been having a big psoriasis flare since something like last August/September and several times I've worried myself into thinking my bio is running out of steam especially when I've had joint pain as well. I've questioned and questioned as well, if the bio is working as it should, why do I feel so unwell .... tired, exhausted, no energy, brain fog ...... barely able to function physically or mentally?
But I actually think the answer might be coming from left field ....... thirteen months ago my GP doubled my dose of the beta-blocker atenolol that I take for high blood pressure and, guess what, atenolol is known to exacerbate pre-existing psoriasis. Not only that, my blood pressure and pulse rate are now so low it's not surprising that I feel half dead. So this morning I decided not to take my atenolol and guess what, I feel 100% better than I did yesterday ..... not great as my BP still very low but better.
So while I wait for my GP appointment to adjust the dose of atenolol my resolution is to stop blaming PsA for everything, keep moisturing my dry winter skin and stop worrying about the bio running out of steam and just go with the flow provided overall I'm doing ok. In fact maybe, just maybe, I can start to look forward to feeling better than I have for a very, very long time.
Jules, thanks for the incite on atenol. I take it too but regularly question how much I need it. I did not think about it and fatigue I focus on the PSA or thyroid meds on that. I am going too look into that more.
Grandma J, you have also been doing what seems like a lot with your mothers party, more intense exercise, etc. Those things with all their stress and then worring about your meds can and probably make them worse. Seems like you’ve been doing very well for awhile and a little bump in the road is likely normal reaction. Keep going and you should adjust if not then call the rheumy and see where to go. Balancing it all has to have ups and downs we’re all different but we all have high expectations because we strive for the normal we used to have. When I hear remission from people I often wonder if that is a modified normal can we ever truly be where we once were?
I so agree about the hyper-vigilance, Janeatiu. I'd be much better off ignoring my little aches and pains. I do have anxiety, but a lot of it comes, too, from being afraid my back will go out again-which I don't think is a PsA flare.
Jules, I used to take a bp med, brain fog--I can't remember what it was, but I know it wasn't atenolol. Then my internist told me the health insurance people suggested I be taken off it because it could be causing me the aches and pains I must have been mentioning then. She put me on a calcium channel blocker instead, Amlodipine. Who knows if it made a difference 'cuz I kept having pain! It does keep my bp down, though.
And, Rachael, I did have a lot going on and, yes, the exercising is making me sore. I need to constantly remind myself that the biologic isn't going to get rid of any of the damage already done, and just not feeling so tired is a good indication Enbrel is working. Good to have the reassurance from you guys! Thanks!