I saw my rheumatologist yesterday. I have to preface this post with this: I do love my rheumy. She is excellent. She is intelligent, caring and open with her opinion. She’s happy to explain her thinking, and happy for me to ask questions. I trust her.
But I don’t always agree with her treatment plan. She is the expert on Rheumatoid Arthritis from a medical point of view. But I am the expert on me. On what I am experiencing. The difficulties I’m facing. What my life looks like.
These things affect how I’d like my RA to be treated.
She was running very late yesterday. I waited more than an hour. She wanted to catch up. I understand this.
But I wanted to talk. And to her credit, she didn’t rush me out of there. I think I am perhaps more frustrated right now, with my disease than anything else. Frustrated that it seems no one can see how bad things have gotten. I’m not explaining it well enough, no matter how I try.
I am tired of waiting.
Enbrel is working a little. Maybe 20-30%? It’s always hard to put a number on it. Rheumy wants me to persevere. I expected her to want me to try the full four months. Another six shots.
But she wants me to give it ANOTHER six months, after that. So ten months in total before she will change the treatment.
That is a very long time to wait. I understand that I have long standing disease. I understand now that it’s considered severe. I understand a response might take longer. But ten months?
My understanding is that most people give a biologic 3-4 months. Please, I’d love to hear others experiences…please comment?
She did say that good responders would have responded by now. She said she had a patient that it took six months for Enbrel to start to work. So OK, I understand. I’m happy to commit to six full months.
I’m not sure about ten months. Rheumy also said I could call her if I wasn’t managing, if the pain got unbearable.
I’d just finished telling her that the pain *is* unbearable. I’d just finished telling her that I;m not managing. That my life consists of couch time. That I take 4 oxys and two slow release morphine every day. That I need a friend to pick my daughter up from school. Hmmmmm.
So then I told her I’d restarted methotrexate. She looked alarmed and asked my why I’d stopped taking it! Um, remember, there was this little issue with a majorly bad reaction that put me in hospital. I had to remind her of the circumstances, and that I’d been hospitalised.
She remembered in a rush and apologised. She then agreed that a lower dose was a good idea, however. So that we have more treatment options down the line. She left it up to me as to whether to stay at 5mg or try 7.5mg. She felt methotrexate might make Enbrel work better. Several studies support this, it was part of my reasoning also. 30% improvement from Enbrel…if I can get another 20% from methotrexate, things are looking up?
I might then be able to reduce my prednisone.
Which Rheumy wants me OFF. Stat! I read a summary of the updated EULAR (European Union League Against Rheumatism) Guidelines for Rheumatoid Arthritis and they emphasize that only low dose corticosteroids (prednisone) should be used. Low dose isn’t defined, but it’s usually 7.5mg or less. And should be tapered within 6 months. So her approach is in line with the latest guidelines. But it’s not realistic for me.
I explained to her that I am completely useless at 10mg of prednisone. She said I needed to get down to 7.5mg. I said I can’t. Flat out. I’m sorry, but I can’t live a non-functional, miserable life on oxycodone and morphine when I can take prednisone and function most of the time.
She wasn’t happy about the level of opioids I’ve been taking. I told her I needed them to function. But I don’t enjoy being doped up and zombiefied (that’s the medical term…LOL).
So she agreed. 20mg of prednisone to get me back on my feet. Taper down to 15mg, which is my usual dose over two weeks. Then after another two weeks start to taper again.
I agreed, but just between you and me, I’m not going to do that. I have done the prednisone taper four times now. Each time, it doesn’t matter how slowly I taper, somewhere between 12mg and 10mg (on Enbrel) the pain becomes too much, and life stops.
I am not tapering prednisone this time until I am sure I am getting a response from methotrexate and/or Enbrel. It is an exercise in torture. Pure, pointless torture. It takes me out of the game, brings on depression from the pain and disability. And we KNOW how this ends. I taper down. I suffer. I hold on until I can see my rheumatologist. We up the prednisone. The game begins anew.
My body. My choice.
I understand the risks. I wish the rest of the world did. All the good options were off the table years ago. Now it’s all about the hard choices.
I also complained about my shoulder again. The pain in my shoulder has been somewhere between moderate and excruciating for about 2 years now. It feels like there is a knife permanently lodge in my back. And another at the front of the shoulder.
I keep using it because I have to. Yes it hurts. She told me it can’t be that severe, else I wouldn’t be able to lift my arm.
Erm…I have to lift my arm. Yes it hurts. I also believe in ‘use it or lose it’. If I stop moving it, I will l lose that mobility. So I lift my arm.
So she agreed to order some x-rays.
The appointment felt like an uphill battle. But as I said, she was running late. I kept interruptin and asking for things. She was not unsympathetic. And all her reasoning makes sense. And for the most part, she gave me everything I wanted.
I am just tired of waiting. I would like to move onto the next treatment option more quickly. But I will give it six months. Prednisone will kick in tomorrow or the next day. Life will return.
And I will become more objective. I am still thankful that my rheumy got me on biological therapy at all.
So I am still grateful. Now I need to return that favour with trust and faith in her years of experience.