Posted 7/28/2016 6:13 PM (GMT 0)
I have asthma, which is normally under control, since I had allergy shots back in the early 90's which probably triggered RA. But I digress!
In 2009 I had my foot reconstructed and I had to go off my Biologic. I could have stayed on mthx, but my liver was going crazy, so I went off of it. Within days of the surgery, the pitch of my voice started lowering. A musician friend really noticed it. Then I started having trouble swallowing and eating. Then it became difficult to breath. I could no longer speak a word! (That was worse than RA, I think, LOL!)(Thickening of the vocal folds caused the pitch to lower. Think double bass, or tuba - big to make low sounds)
I have a cousin with RA, and she had been through this very thing. Except she was only about 3 feet tall, because prednisone stunted her growth as a child. So she had a very small airway. She went to the ER, where she stopped breathing, died, and got revived (This is serious!!) They put a trache in, and she has it permanently. They finally figured out she had an RA nodule in her throat. She was only taking prednisone as she is addicted to it, with no adrenal gland function. I suggested she should be on mthx, and her rheumatologist said, "I never thought of that!" and put her on it. She has had no further throat nodules.
Back to me, I was back on my RA meds, and gradually the throat seemed to get better - the meds were working. But I take a cortisone inhaler for my asthma, and my voice got worse and worse again. So I got my rheumatologist to refer me to an ENT. I got in within days, and he said there was a definite thickening in my throat, it might be cancer. I got referred to a hospital ENT in case I needed surgery. The hospital ENT did a throat scope, and found a large white lump in my throat. He thought is was cancer, and wanted to do a biopsy. By that time, I was running a yeast infection in my mouth, and I wondered if maybe the RA nodule might have caught the cortisone as I was breathing the inhaler in, and the yeast colonized the nodule on the surface. So I got Nystatin and rinsed my mouth and gargled deeply.
When I went back to see the hospital ENT, he said the whiteness was gone. I told him the Nystatin got rid of it. He was unconvinced! But the nodule was still there, but much smaller, so he told me I probably didn't have throat cancer. Well, I had already figured that out myself.
I am a musician, and when I was finally able to speak again, after many months, I started to sing again. I notice that the A and B notes in the middle of the staff still were not there. (That spot is where the nodule was, and those notes resonated on that spot!) I could sing high easily and low. I think it took a year or more before I could sing those notes, and I never recovered the quality of my voice. Sigh!
As for lung breathing issues, be careful of Rituxan. It causes some kind of enzymatic reaction in the lungs. I know people with asthma that had one set of infusions and then went off totally. Another lady took 6 years before the breathing issues were out of control.
I was really into exercising, and I went out riding my bike a few days after my first Rituxan infusion. I was on the flat a block from my home. I suddenly was radically out of breath, even though I was riding up to 35 km every other day. I kept pushing, and got some air flow back, but after months it became obvious that Rituxan was causing the problem. Still, I didn't want to switch meds, so I kept on pushing my now much slower bike rides. But when it got to the point where I had to rest after each step I took up from the basement, I was finished with Rituxan.
I did improve a bit, but 6 years later from when I started Rituxan, I finally feel like I can breath again. In the winter I went out riding and even a slight 2% grade just killed my lungs. And certainly, my flute playing has improved radically as the lungs have improved. That is over 3 years since I quit Rituxan. But that doesn't happen to everyone, just a warning for people with asthma who are really struggling to breath and they are on Rituxan.
Sorry for the long post.