So yesterdays rheumy appointment.
She refused the methyprednisone infusion treatment. She doesn’t believe it would help me.
She has told me to up my prednisone back up to 50mg, and then taper by 12.5mg every week til 25mg, and then taper by fives until I get back to 15mg.
Because I wound up back in the ER with upper GI pain recently, she thinks it might be time to fail Xeljanz. But I only have one biological left, and so it’s a difficult decision. I told her that Xeljanz doesn’t do enough, regardless. We got into a debate, with her telling me I had told her that it had helped. I said yes, it had helped, and more than any other treatment has, but not enough to be worthwhile.
Her next choice is Actemra, but she needs to check with my immunologist to see if that’s acceptable. I told her I’d like to try rituxan – if I only have one shot left, I’d like to use the biggest gun. She said she won’t do that. My rheumatologist is very frustrated because all my symptoms don’t make sense, and I have diseases that shouldn’t co-exist. Eosinophilic Esophagitis should not be possible on the doses of prednisone I am on. That’s exactly what my immunologist said, so fine. They both agree. Nevertheless, the biopsy results are indisputable, I have Eosinophilic Esophagitis.
My rheumatologist told me to start taking Naprosyn again, to reduce my reliance on opioids. I told her that I’d just spent five days having to manage on one 10mg oxynorm and 30mg of targin per day. And that it didn’t go well.
She said my pain is out of all proportion to what she can see on scans. I agree. I’m ok with that. I don’t have swelling, I don’t have erosions. Even my osteoarthritis is generally mild to moderate, only my lumbar spine is severe.
But I am in daily pain, and the nightly pain is brutal. Now that I am back on opioids, it is evening out. The pain is very real to me, even if it isn’t ‘real’ pain. Organic pain.
She believes I have fibromyalgia, and that is the source of the pain. I disagree, but I reminded her that I have tried three fibromyalgia drugs, because just because I don’t think its fibro, doesn’t mean its not fibro. Cymbalta, endep and lyrica. None helped, and most made me feel significantly worse.
So I maybe I have fibromyalgia, but I have tried the treatments, and so it doesn’t matter either way at this point.
I told her that I’d done a burst of prednisone up to 50mg and that I went for a weekend away to the beach, and that I did a 5km walk. Which is something I haven’t been able to do in 3 years, at least. It was wonderful, miraculous even. That’s what made me emotional, and I cried.
She asked me why I was so emotional. And why I am so much worse now. I said I’m not worse, except that I am coming off five days of more pain than I can handle, due to a lack of opioids. I am probably more fragile because of it, even as I am feeling better. I am just being as honest and blunt as I can be, to get through to her how desperate I am right now.
She said she felt it was all the prednisone that I have been taking, and it was making my emotional. That didn’t bode well as prednisone can cause pyschosis, and she said it gave her more reason not to give me a prednisone infusion.
I asked her to reconsider. She said no. I accept that. I have to.
In fact, that’s where I’m at. I accept that this is my life now. Through a bunch of bad choices and bad luck, this is where I’m at now.
I’m mostly housebound. I make the effort to get out and meet a few special people whom I adore. Two good friends, and their presence makes me happy. Happiness absolves pain to a degree, and relationships are worth fighting for. And that means going out to meet someone, regardless of being in a lot of pain. They are also the only people who ever come and see me anymore, so even though they know I have ISHOOS, I still have to show them that I don’t take them for granted. Make the effort. Get out and have fun.
Most of my life is spent on my couch. I am completely dependent on medication – prednisone and oxycodone. I haven’t been writing much, because I can’t even string a few words together. I’m coming out of that now though. Getting back to ‘normal’.
And this is what Im going to have to accept. The whole ‘incurable illness’ thing never quite made it through to my brain, because the vast majority of people respond to treatment.
Now I have to choose whether to take a massive dose of oral prednisone, or have a longer life on the couch. Not sure. But it’s time to stop fighting. Stop searching for something to put Humpty back together. Humpty is broken, but its only my body that’s broken. I have my wheelchair. The power assist I have allows me to shop with the Chicklet or by myself. I will borrow money to buy a trike attachment so I can get out during the day, in the sun. I will get to gym classes and keep making them a priority.
I will take a breather. Rest. Accept that for whatever reason, this is my lot. And it’s a whole lot better than a lot of other people’s lot.
I will focus on repairing the relationship with my son. And reassuring my daughter.
My life is spent on the couch but I have a life. I get to eat rice and vegetables and fruit and chicken. But those foods are abundant and some people have no food at all. Or have to survive on a handful of rice. I am lonely. But I have a couple of really great people in my life. That is so much better than tens of acquaintances. This isn’t the life I dreamed of, but who gets that really?
Time to take a step back, and breathe.
I understand every word. I’ve been trying to come to grips with this whole RA-lung terminal no reversing no cure thing. Fortunately I have always responded well to the treatments. But doesn’t matter now. Once it’s in the organs, game over. I’m here too, right here with you!
I wish I could take your pain away.
Thanks Maria. You have been a huge support to me. I think I have to just believe the docs now and accept that all this pain is mostly in my head. Maybe find a new psychologist and start from scratch. Mine’s great, but he ‘knows’ everything about me, and I think we’ve achieved all we’re going to.
I don’t know what to say other than focusing on the good is good. I wish I could help.Take care Xx
Thanks Rochelle. Always try to find the upside. Gets harder some days tho! But they are still there. Thanks xx
Melissa, you’re right. Once its attacking your organs, particularly lungs and heart, it becomes a whole other disease. A very serious one. Very hard to live with, when the world at large just things you have achey joints, but you’re dealing with life threatening complications. Hang in there, I really feel for you x
I totally agree about organ damage is a whole different game. I cannot use prednisone except in super short bursts so I can not comment on that. I can say Rituxan has been a good medication for me but I am not your doctor so I understand.
I refused Rituxan for several years likely on the same principle your doctor objects, but like you, it was my last shot and like a moon shot and it worked. I hope you find similar results on your next medication when and where it starts.