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.
I know it’s hard, but stick with it. You only get five bites of the apples, so make sure each bite last long enough to be 100 % sure it is not working. I know how you feel after waiting years to get on th program you just want to find the right drug and get your life back, but some things you can not short cut. My first one did not work, so just started my Enbrel, my dr made it clear that you have to take it for 6 months to reach its maximum effect, so no change of drug til then. Least this is only your first one, so you have four to go. This is my second so if it doesn’t work I’m down to three. Thinking of you and hoping that with the methotrexate you will improve. Xxxxxxxxxxx
Thanks Sarah. Its so good to get others’ perspectives…and hear what your rheumies are doing. I can stick it out six months…and you’re right, don’t to quit to soon. I really hopeEnbrel works for you!
It did actually take 6 months before I realized that the Humira was working for me. It was very slow and one day I suddenly realized that I could do more and the fatigue was not so excruciating as it had been.
And as Sarah said if you only get to try 5 in all maybe the choices will improve. On the plus side I read that even if the anti-TNF is not helping your symptoms, it still has the effect of mostly stopping joint damage.
It sounds like you are really having a tough time. I hope that things look up. At least she went along with most of your concerns.
Also from what I read you need to do a slow taper from your base amount of pred.. I’m sure you won’t just stop when you feel so bad without it. I know that hold on until you see the rheumy feeling. And then so often nothing happens. All the best
Yes, so true. But we still hold on…hoping 🙂 Things are already improving. After 2 days of 20mg of pred, I am feeling the fatigue start to lift and the pain is lessoning. I can also feel the hyper feeling, and the anxiety start to happen also. But I can work my way thru that :). Good news about the joint damage. Its worth it for that reason alone. Patience I guess. Six months is not that long, right? 🙂
Hi Arthritic Chic, this is the first time I have left a comment. I have been on Enbrel, Humira, Orencia infusions and now orencia injections. I can not take methotrexate either as it effects my liver badly, my rheumy has decided I should be on it, doesn’t matter what happened last time. I went nope I am not taking it, he stated I needed to take it as it stops you making antibodies to the biologicals, when he explained that I asked if I can go on the lowest dose possible. I started to take 5mgs and within 2 weeks I had so many side effects from it. The fatigue, nausea all the horrible ones, then about 2 months into it I realisied my eye sight was being effected badly, I could not focus and my eye would always water badly if I tried to read, not good when you are a nurse giving out medications. So I stopped metho completely and feel so much better about it. I spoke to my GP and he says I know my body and to take what ever I think I should. I think alot of rheumys cant get you in and out of their office quick enough, I saw this new one as my rheumy has retired and he charged me $230 to sit in his office for 5 mins, I was in the waiting room longer than in his office and this was supposed to be a joint count and script appointment. I decided after leaving his office I had to take control of my disease and my life. So now I have stopped the metho and I have my orencia injection every week. I take 10 mgs of prednisone ( and yes my Dr wants me down under 7.5mgs) which is were I feel I can cope with the amount of pain I live with. I have a norspan patch which I change every 5 days and I take oxycodone 5mg 2 tablets four times a day. The doctors can make you feel like a drug addict when asking for pain relief and I was so fed up with it, I ended up asking to be refereed to the pain clinic which has made the Dr get off my back about how many pain killers I take. I know this is a long reply but I do understand what your post is about, Like I have said I have decided to take control of this disease, If I have to tell the Dr I am taking something I am not so be it. You do an amazing job with this page, I want to thank you for it.
Thanks Audrey. I think you’re very strong, and absolutely right…you have to take control of your body, and your treatment. Good for you! Sometimes we have to work around the rules, which at first feels wrong, but sometimes its necessary. You are taking a lot of pain meds, but you have to do whatever you have to do to get thru the day…and the next day, and the next. It would be great to not need those meds. but if you do, you do. And doctors shouldn’t make us feel like addicts. Stay strong – I believe you are doing all the right things. I really hope the Orencia gives you continual improvement…so you can lower your pain meds…and maybe even get down to that ‘holy grail’ mark of 7.5 mg of pred. thanks for your comments. wishing you all the best!
I just started enbrel in January, it took 4 months before I felt any improvement. Its not doing as much as I’d hoped, but rheumy says my numbers are good, thats great, but the fatigue and pain I still feel is a let down.
thanks racanuck. I’m realising my rheumy is right, I definately need to be more patient with Enbrel…so thank you everyone. Numbers are only part of the story…and not the most important part. My bloodwork has never reflected how I feel. And I’ve had perfect bloodwork, and an ultrasound that showed active inflammation on the same day. Just not always relevant. I hope enbrel continues to improve for you, or you can add something else in to give you more improvement. Are you on mtx as well?