Well, after a month or so on MTX with wretched side effects - nausea - but also with some benefit - still in pain all the time but not as severe - my rheumatologist decided to lessen the MTX dose and add Enbrel. It was quickly approved, with a $20/mo. copay: not too bad.
I got the stuff and, before I could take it, came down with a cold, or something. The doc said to hold off until I had no fever. After a week, still coughing but with no fever, I gave myself the jab. The only effect so far is a little red dot where I clicked myself. Does it hurt? Minimally. Too early, after two days, to say what it’s doing for the PA.
I can’t tell you how much I hate having this d----d disease. I keep myself sane by DOING stuff, and right now I can’t do squat. So I hope it works.
Hang in. I hope it helps. Mtx helped my PsA symptoms while simultaneously making me feel like I was being poisoned. Biologics (in my case humira) helped me feel alive again. I hope they help you.
Well. after only five days, it really seems to be helping. It’s hard to say definitively, of course, because each day is different with this crazy disease, but I haven’t felt this physically capable in a while. For the past months, any physical work, or even a little walk, would exhaust me and leave pretty well crippled up. Today I did carpentry for a few hours, walked around the yard, and I feel pretty good. The pains in my hands are much less, and I feel like I can walk much more freely, not all stiffened and cramped up. Tomorrow may be different - heaven knows - but the past couple of days have been really encouraging.
I totally feel you pain when it comes to methotextrate. I gave myself the shot on Sunday night and spent Monday in bed hoping no to hurl or die. I lost so much hair. My insurance company required a 6 month trial and failure before I could get anything else. Switched to Otezla and have hardly any issues. I’m kind of sick of the constant fatigue though.
I was approved for Humira a few weeks ago. It was delivered Friday a week ago. I’d waited to have blood tests until I knew the patient assistance was approved. Went for TB test at my primary on Friday. And then started feeling horrible over the weekend with high fever. Monday my primary did a chest xray because I had pain in my middle back when I took deep breaths. (no cold mind you, no sneezing or coughing…nothing) And the xray showed severe pneumonia in my lower left lobe. No humira for at least 6 weeks. Two days later my right foot started with the worst PsA flare I’ve had yet. I’ve been in sheer agony, unable to put any weight on my foot and crawling to the bathroom. I guess my point of this is that I almost went ahead and did my first Humira shot on my own before knowing I had pneumonia. I shudder to think what might have happened. Dont take any infection lightly when using biologics. I am shattered that I will be back on the prednisone treadmill for this flare, but hope I’ll be well enough to start Humira soon. Hoping the Enbrel will help Kutya. I understand your frustration in feeling you’ve lost your life. I’ve been there and still am. Just don’t get so desperate that you don’t listen to your doctor.
Sorry to hear about your setback, Kris10. One of th cruelties of this d----d disease is that the only way to treat it is to take on therapies which in themselves put our overall health at risk. Our immune system is supposed to be our friend, yet here we are knocking it down.
I continue to feel quite well PA-wise, I still have the cough that led to the delay in starting it, but it is SLOWLY getting better. The latest is that I jammed a philips bit in one side of my finger and out the other, making a pretty spectacular mess out of my fingertip. All I can do is keep it clean and hope it doesn’t get infected. Te hospital said they’d start antibiotics at the first sign of infection, but I sort of wonder why they don’t just start it now, given the risks. How nice it was until PA to take my health, and my body’s ability to heal, for granted!
Ouch! Sorry to hear! I don’t have any opinion on the not starting antibiotics immediately, because I’m not there, I’m not a doc, and it’s not my finger - but what I do have an opinion on is that you should follow your gut - if you think preventative antibiotics make sense, go back and talk to them about it, or get a second opinion. It’s your body, and your opinion counts!
I do so hope it turns out well, and doesn’t cause too much setback for you
I’m cringing at the thought of your punching a hole through your finger! Talk about adding insult to injury…yikes! I know, and understand, that physicians are trying to be prudent in not overprescribing antibiotics, but in your case, I wonder if the preventative measure might not be wise. Stay away from sharp objects!
I tend to get infections in hands, especially the fingers. I go to the doctor at first sign infection. Because I am so prone infections, it’s typically within 24 hours of the injury. Occasionally using warm soaks will keep me from needing antibiotics. It depends upon the speed of spread. If I get a similar wound on my arm, I rarely get infection. It’s odd.
One of the annoyances of PA is that, between the disease itself and the side effects of the meds, you don’t really know you’re own body any more. I used to know which cuts to worry about and which I could safely ignore. I used to feel if I pushed myself physically, I would after maybe a little discomfort bounce back and get stronger. Now I’m not so sure. And now, life’s little physical problems just might trigger off a PA flare, so I have to worry about them, it seems. I used to ignore a lot of stuff with impunity: now I’m not sure I can. I’m still gonna push forward, though. My wife tells me I have to “learn to take it easy,” but she doesn’t realize how hard that is for a lunatic like me.
Meanwhile, the finger still seems fine. It’s a mess, but no sign at all of infection/inflammation. We’ll see. I have an appointment wiht my primary doctor on Thursday. I’ll see what he says then.
Oh, and I bought a box of 100 lag screws. They get installed with a wrench, so that I can avoid drilling another hole in my hand. Wish I’d thought of that sooner!
That is so true! And the worrying–I was like you–never had infections from anything, nor worried about getting them. If I injured my skin, I’d wash it and it was all good. I burned my finger really badly a couple weeks ago with hot glue from a glue gun. Peeled a 3/4"x1/2" piece of skin right off. I stressed about that sooo much. I washed it at least 6 times a day, put Neosporin and a bandage on it that many times, too, each day for about a week. I was actually still putting a bandage on last week when I went to Mayo Clinic. Luckily, it didn’t get infected, but what a bother taking care of it to avoid infection! I even considered not taking my Enbrel injection one Saturday, but took it anyway. I have mild occasional leukopenia, which I think is low white blood cells, and I’m not sure, but that could cause low immunity.
Oh well, I guess, Kutya, we have to figure out how to deal with this…glad your finger seems fine and hopefully it’ll heal up fast. Ouch, talk about painful!!!
