Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group What to do next???

I've been on MTX for 4 yrs, but needed more to keep me feeling okay. No NSAID had seemed to work, so he moved on to Remicade with the MTX. Nothing. Zilch. Was able to add Mobic and get some response after 5 yrs off of it. Switched to Enbrel and MTX. Little response at weekly dose, but much better at twice weekly (same total weekly dose-50mg). But it wasn't as good as I would have thought it would be, so when I got firm dx of PsA, rheumy put me on Simponi. Responded well and was quite happy till about 3 months ago. Seemed like a flare started and wouldn't let up. Medrol pack did very little, if anything a month ago. I've had a nasty respiratory bug last week--maybe strep, but a Z-pack took care of it, though I'm still pretty tired.

Now, I'm on MTX, Mobic and Simponi, but feeling worse. Which is it? I'm betting it's the Simponi, but Mobic has quit on me one other time. But it's toward the end of the month, a few days before the next dose. Then, because the effectiveness has worn off, it takes up to 5 days to get the good feelings back. Only for a couple of months, there are no good feelings to be had.

Will discuss with rheumy, but wonder what the chances of me being able to find a biologic to work would be? If I jump to Humira, it will be my 4th. Anyone had to go that far (trialing 4 different biologics) to find relief? Would I go back to Enbrel again, or something new?

Does anyone have an idea on how to tell a flare from a biologic that quit working? Am I expecting too much? I'm not expecting to become 'normal' (read: when I was in 30s before anything started going wrong), just to be relatively comfortable while still taking current meds and keeping tabs with my pain mgmt doc for the occasional procedure and the daily 4 percocets. I'm 55, female. Appt is on Wednesday. Even hubby notices that I'm not doing as well as 3 months ago. And he's been busy with his own health problems. Sorry for long post.

I am sorry Rumble that you are having these problems. I have taken the MTX, Imuran, Humira and Remicade along with steroids most of the time.
I really never got any relief except that the Imuran took care of the chronic Iritis/Uveitis.

I just wrote you a long PM and since I am kicked back in my recliner, I hit something and lost it all. Will try again tomorrow.

I hope your dr. has an idea of something that will help you. How is your husband doing?

Hugs

Hi Rumble,
When I had to take antibiotics last year for an infection the antibiotics made me flare. Do you think you might be flaring from the abx or is this what has been happening lately regardless of the abx?

The idea of antibiotics making you flare is interesting to me.
I have been on a maintenance dose of one antibiotic since last May for a chronic kidney infection and on my 3rd different antibiotic this winter trying to clear up a sinus infection. Makes me wonder if this is why I have been having a harder time.

Or if the infections are just because of my immune system.

Possi,
My rheumy told me that some of his patients flare on antibiotics, he said it was common. I think I will have to be near death to take them again..ouch.

Was your Rheumatologist telling you it was common to flare because of the anti-biotics or common to flare when you were fighting an infection severe enough to need antibiotics? I have never heard that antibiotics themselves cause flares, but I have certainly been told that viral and bacterial illness often leads to a flare.

ValsMum and Stormy, both of you posts sound legitimate. I think it might could be either. I have flared from being very sick and have also been given IV steroids to keep me from flaring when I have been sick enough to be hospitalized. Think it is time for a heart to heart with the doc.

Thanks for sharing.

I could be flared from being sick and the antibiotics (Z-pack) knocked out the sore throat, but it took a couple of days to do it (the immunosuppression fighting back?). Bactrim has been one to give me some antiinflammatory effect at 2 pills twice a day. (Possi, do you take nitrofurantoin for your kidney stuff? I take that every night just to hold off bladder infections. Probably need to see a urologist, but my plate is full of specialists and no more room right now. )

Oddly, I feel better today now that the weather front is upon us. The prodrome on this weather system has been brutal and pain levels soared. Praying for steady rain rather than the snow that is threatening our area. Have to go to work tomorrow....and some extra training hours (good thing!)

However the problem remains, Simponi wears off 4-6 days early and still takes 5 days after the dose to get back on track. So 1/3 of month sucks. There has to be something better, right? Enbrel didn't wear off (once I got on 2 shots a week), but it wasn't great relief, either. So do I head for my 4th biologic (Humira) or go back to Enbrel? It doesn't seem like anyone has tried 4 biologics before.... Appt on Wednesday. Opinions anyone? Am I expecting too much from a med that costs my insurance $2000/month?

The lung bug is really bad.
it seems to liner for weeks , your chest feel raw and you dread Coughing because It makes it Worse ?
then there is another flu going around that covers what the first bug doesnt.
All this extra stress is a flare factor, I hope this passes quickly for you.

Appt with rheumy went well. We agreed that having 10-12 bad days in a month on a biologic isn't a good sign. As soon as insurance approves (and they are usually pretty fast), I'll be starting Humira. This will be biologic #4. Remicade (nothing), then Enbrel (wasn't too bad, but only helped stiffness and stamina...little for pain in various parts), then Simponi (started out okay, but lost steam in past 3 months). Hope this one works out. At least it is flexible in a different way than others in that I can take a full dose every other week or, if I need extra oomph, every week.

In the interest of bettering myself in my job, I'm doing some extra training (read: overtime) each day for a couple of hours before I start my regular shift at 3pm. By the end of my work week on Saturday night, I will have put in an extra 8-10 hrs. I'm really feeling this in the legs and feet now. My extra hours are spent sitting at a microscope, fortunately...different than the on-my-feet regular work. Whew...hope it's only for another week or two. Not sure how long I can keep this up.