Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Going to start Cosentyx next--6th biologic

After a very long time off my beloved Cimzia (lasted 2.5 yrs), finally getting to move on to getting back on a treatment.

Long story short (I can run on at the keyboard if not careful), a year ago, I had pneumonia. It caused me to miss 2 weeks of work, largely due to exhaustion though I was never hospitalized. While on antibiotics, I stopped my MTX and delayed my Cimzia dose. Just after finishing the antibiotics, I had a rheumy check-up and asked when I'd be cleared to go on with the shot. He said if I was feeling okay and was a few days past the last dose, he had no reason for delaying. Happily, I went home and took the shots. The next week, my PCP called to say she wanted to do a chest x-ray to make sure all the pneumonia (one lobe of one lung) was clear. Since I felt fine, I was pretty surprised that the x-ray was not clear. So no more Cimzia till my x-rays were clear.

This took me on quite a trip since the next 3 x-rays over a span of two months were not clear either. Radiologist in his last report recommended a CT. That was done and revealed a 1.2cm nodule and enlarged lymph node! And a PET-CT was recommended. That was done, but did not rule out cancer. (my hubby was frantic, I was just curious since I didn't feel bad, nor did I have symptoms) Anyway, after a visit to an oncologist who wasn't at all concerned and a pulmonologist who just wanted to repeat the CT in December, which was the same. It was just 'there' and not growing. No big deal. Of course, all this testing meant that there was no Cimzia use for 6 months.

Then, I got up in the middle of the night in Nov to go pee and had the unfortunate event of fainting in the bathroom while standing at the sink. I hit my head on something and got an impressive black eye and persistent dizziness. Then I got up and made it to bedroom and fainted one last time, this time wrenching my right foot under me as I fell. X-rays the next day revealed 3 broken bones. Ortho looked at it a couple of days later and since it was in Lisfranc area (midfoot), he wanted an MRI. After the MRI of foot showed a couple more broken bones, he requested MRI of ankle, which showed a couple more broken bones--total 8 nondisplaced fractures. I was non-weightbearing for 8 weeks and home from work the whole time. Graduated to cane and was able to go back to work in boot in late January. Still no Cimzia. But I fixed my own dizziness with a DIY Epley maneuver! Those little ear stones were finally back where they belonged.

Then, it was determined that fractures were not all healing and I got approved for a bone growth stimulator. Still using that and the cane and it's 7 months since I fell. There are a couple of stations I still can't do at work. I can walk short distances (around the house or around one small area at work) without a cane, but I feel sturdier with it. Have a temp handicap placard for parking.

But I avoided having surgery. Saw rheumy yesterday and begged to be able to start something. Hubby wasn't too excited for me to take a biologic since in his opinion 'that stuff is going to kill you'. After a year off any treatment, I am convinced that NOT treating this is going to kill me or make me have to quit my job that pays for our medical insurance. We've had a few heated discussions regarding my desire to take these meds. I see it as a realistic treatment---he sees it as something that is going to take me away from him sooner than he'd like. He tried to insist on making the decision on my health care. I rebelled.

So, the day before I had this rheumy appt, I sat down to talk to him and explained my desire. Back in 2011, he was diagnosed with prostate cancer. Both of us looked at possible treatments since he didn't want surgery. Radiation was highly recommended in literature. A referral to a rad onc was made and when we saw him, he recommended Cyberknife, a different way to do radiation, though it didn't have a long track record. I like tried and true--but hubby wanted the newest and cutting edge. Since it was his cancer and his body, I let him make that decision. I told him two days ago that I wanted that same ability--to make my own choice for my own body. He understood and said he would not make waves. But he did say he didn't want me to go back on Cimzia. Argh. But he's not going to go totally against a biologic, so thus I'm starting Cosentyx when it's approved by insurance.

I really tried to make this short--left a lot out. Only med I'm still taking through this year was MTX. Also had to stop taking an NSAID because of it affecting kidney function. Creatinine went up to 1.33 and rheumy said that wasn't going to work. It's back down to 0.95. About 2 weeks after I broke my foot, I started having some major low back pain on one side one evening. It kept increasing till I was writhing, crying, vomiting and made hubby take me to ER. A CT was done and they asked if I'd ever passed a kidney stone. Nope. Well, I had a 7mm stone stuck in ureter. Got some good drugs (took a huge amount to stop the writhing, crying, vomiting) and was admitted for laser lithotripsy the next day. Was home in under 24 hrs with a stent. Ugh.

That's my update...other than recently having my 7th or 8th radio-frequency ablation on my SI joints. It works!

Hubby and I were both hoping for a mellower year this year. And this one has been just that, compared to last year. Scary, huh?

(for just me, in 2016 I had 7 chest x-rays, 3 chest CT, one PET-CT, one head CT, two head MRIs, two foot/ankle MRIs, many foot x-rays, a renal stone CT, laser lithotripsy---may have missed something in this list. 2017 is far less eventful, so far, knock wood.)