Having a bit of a crap time at the moment and wanted to see if this is similar to how others have felt at bad times.
After a bunch of neck / throat issues (see my other post on that topic), it was thought that potentially my old Biologic (Etanercept) had finally run out for steam after 10 good years where I had excellent control.
I’ve just taken my third dose of Humira (Amgevita generic) and first dose was fine, second seemed to be a dodgy pen and most of the medicine seemed to come back out the injection site, third one went ok.
However, I feel as weak as a newborn kitten right now, I’ve gone from fairly strong and able to do pretty much anything I needed to do, to some who’s arms start shaking when I lift a full kettle (got to keep the tea quota up), legs start to shake when I walk up or down too many stairs. My neck muscles feel like they’re screaming at me just keeping my head upright, they literally feel like their vibrating.
I’m well aware PSA can affect muscles but I have never felt weak like this other than when I’ve had flu or something as nasty and usually cleared up two or three days later.
I spoke to my GP a few weeks back, took some bloods which I didn’t hear the results of yet, so assuming they are as always “normal”, spoke to Rheumatology just over a week ago and got given a steroid taper prescription starting at 15mg and had genuinely thought that would sort me right out. In fairness it’s taken the edge off it a little bit maybe a 5-10% improvement at best.
My assumption is that I’m flaring up while I wait for the Humira to hopefully kick in (albeit appreciated that may take longer giving I’m switching TNFi and not new to it). However not 100% sure as I’ve never felt like this before.
Has anyone else felt the same way during a flare or while switching Biologics? I’ve not really any pain, just feel so weak and my muscles exhausted and sick to the back teeth of it all.
Often when we start a new to us med, our body decides to have a temper tantrum. On my present biologic which I started 10 month ago, it makes me flare at every dose which is thankfully every 8 weeks apart. The flare can vary in intensity though. I have an upcoming review appt where I will discuss this as I find it annoying obviously. But yes I can get muscle weakness and feel a little flu like too. And most of all tendon inflammation flares which I find particularly irritating.
I also went from Etanercept to Adaluminab/Humira. Etanercept did little for me despite being on it 11 months. Adalminab which was a biosimilar called Imraldi actually really hated me. It reignited my asthma which had been dormant for years, made me poo for England but wasn’t diarrhoea just excessive output (sorry for too much info!) and worse still had me feeling emotionally like I was wading through a sense of impending doom. I knew that doom stuff was med induced and not real but gosh was it wearing. When I reported it back I was whipped off it after a mere 8 weeks.
Sadly not every biologic suits every patient. Do remember that even though both Etanercept and Adaluminab are both antiTNFA’s they work differently as do any of the other antiTFNa’s too. Etanercept circlies the specific protein where as Adaluminab attaches to it I believe. So you are effectively properly switching meds in that regard.
You’ll be glad to know my next one was Cosentyx which adored me and worked exceptionally well for me for 4 or more glorious years.
I’m in SW Ohio and totally understand how you feel. My Otezla started helping less for several months and I finally agreed to a 15 mg tapering dose of prednisone. For me it’s the pain plus absolutely no energy. I do remember it taking a couple doses. When switching to a new medication but by the 3rd I would expect to feel better. I think we are both flaring right now. I know Autumn makes me feel worse especially on days when temperatures swing 25-30 degrees. Hang in there. Epsom Salts soaks in a warm tub of water might help.