Started Humira!

Hi everyone,

I started Humira two weeks ago and I think I got incredibly lucky because four days ago I stopped taking pain medication. Obviously the Humira is the right drug for me. I'm not able to take Methotrexate because of past intestinal surgeries that my Rhuemotologist feels it would aggravate. In addition to Psoriasis, I lived with Ulcerative Colitis until they removed my large intestine. UC is also an auto immune disease, which explains a lot. In any case, after years of being told there was nothing I could do about the pain and that I was just getting old, I was finally diagnosed with PSA and started on Humira. To be honest, I had even started to doubt myself, thinking that ...wow, this must really be what it's like to be 54, even though my friends who are the same age are able to do much more than I was able to do. I was at a point where I could not even hold a stick of deodorant to apply it. I had to buy spray on deodorant! Yuck. I was sleeping on ice packs and taking Diclofenac and Tylenol. Now with the Humira the pain is completely gone. I have a little more energy, though I still get tired and out of breath with any type of arobic exercise (even climbing a flight of stairs). But hey, I'll take it! At least I'm sleeping through the night now without the pain (or the ice packs) waking me up!

My question is....does anyone know whether the breathing issue will get better? I would like to be able to start walking again at a brisk pace without getting so out of breath that I feel like I'm going to pass out.

Also, I've heard that Humira can stop working...is this something I need to worry about? I'm so new to NOT having pain that I'm feeling very fragile and afraid to do anything to bring the pain back.

Thanks for any responses!

Cathy

Hi Cathy! Glad you like Humira.....yes, it is a worry a lot of us have that our biologic will stop working. About the breathing, I get winded easily, too. Have you been checked for asthma-or exercise-induced asthma? I was diagnosed with it about 20 years ago by a really smart pulmonologist who said not all asthma sufferers wheeze. I would get hoarse a lot, and winded easily. She put me in a chamber called the methacholine challenge, which exposes you to gradually increasing doses of asthma triggers. Lo and behold the challenge was stopped at halfway through and they told me I was having an asthma attack! I was so accustomed to feeling like that I didn't even know there was anything wrong. Another thing is, have you had an EKG and stress test recently? If you mention to your dr how tired you get, he/she might want to do a few tests. I also get tired from walking because my back is weak and there is nerve damage to my legs. With the damage PsA has done to you, it may be a little while before you feel stronger. Yay, at least you have seen some improvement since starting Humira!

Phew! I finally figured out how to do this from my phone. Yay!

You’re right, I DO have asthma, but I assumed that since I wasn’t wheezing the way I do with exercise that it wasn’t that. I had no idea you could be having an asthma attack and not wheezing. But additionally, I’ve been feeling light headed when I stand or walk. I’m assuming it’s lack of oxygen.

I had an EKG done recently, but I’ve never had a stress test done. I don’t even know how to get my GP to do that. He’s only just admitted that I have PSA! And probably only because the humira is working and he saw such a difference in me from our last visit to this one.

I’ll start using my asthma meds and see if that helps.

Thanks so much for the input Gramma J. I’m still so worried about all this…especially since I’m alone and have no one to take care of me if my health fails me. That really scares me.

I was able to keep taking Humira after thinking it had caused adverse symptoms (I actually had a viral infection or something) and it seems to be helping. The only thing that has helped my shortness of breath and chest pain, however, has been the prednisone that I was put on for a flare- I have been breathing easier than I had in months. My new rheumatologist suggested I might have some inflammation in my lungs, as well, which might explain why the prednisone helped with that set of symptoms so rapidly. I would definitely talk with your doctor about breathing issues, though, even if it's just to ease your mind. Sybil's right that being active will probably help your breathing. :) It's wonderful that your pain has decreased so much!