A few posts ago I talked about my latest appointment with my rheumatologist, where he effectively told me he would never be able to get me on biological treatments, and I felt he washed his hands of me, and referred me on to the pain clinic, for the pain management docs to handle.
Well, I have received a letter from the hospital. Telling me I have an appointment at the Rheumatology Biological Outpatient Clinic.
All my previous appointments have been at the Adult Early Onset Arthritis Rheumatology Clinic.
Subtle but fairly important difference! It would seem that my rheumy has had a change of heart? So I have been a compliant patient and progressed my referral to the pain clinic. I have NOT been able to reduce my prednisone – in fact I increased it to cope with the School Holidays.
The holidays are now over, so I will enjoy a few more days of less pain and then start to taper down. I have no desire to taper down – I know that increased pain awaits, and quite frankly the pain is bad enough as it is!
But. Rheumy is trying to help me again. So I will do as he says.
And start doing my research in earnest about the biological drugs and their true efficacy. I have read a few posts on RA Warrior which state that Biologicals are not proving to be as effective in the real population, as they are in clinical trials. Several readers of this blog have told me the same thing.
But then again I read plenty of people who say that Humira has changed their life. Or that Enbrel gave them their life back. If there is any possibility of no longer having to live with this pain, I want to take it. Although I am a quite afraid of the potential side effects, having just spent another three days in severe, completely incapacitating pain, I know I need to try whatever options are available.
The question is, are they available? I am getting ahead of myself here. Rheumy said ‘no’ to biological drugs for me. The letter could be a misprint…a mistake. He may still be expecting me to take Arava.
The appointment is not until 30 January 2013. Nearly 4 months away. A long time to wait when my RA is active and painful.
I have an appointment with my third opinion Rheumatologist on the 14th of November. Just over a month away. I am looking forward to hearing what she has to say. A month is not so long to wait.
However it seems like life with Rheumatoid Arthritis is always about waiting.
Waiting for the next appointment.
Waiting for the current treatment to start working.
Waiting for the pain to get less.
Waiting for life to get better.
Waiting, waiting, waiting…
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I went to a talk in Toronto a couple years ago and the Dr who gave it was very positive about biologics and gets into the pros and cons. He starts about 10 minutes in if you want to skip the intro. I was really impressed. Here’s the link
I am taking Humira and it made a difference for me. Good luck at the biologics clinic. I had to fail on Arava to start on it. That was easy. It made me feel crappy and did little for the RA. Been on it 4 years at least (memory)
Thanks, Annette….great video. Lots of good info there, very hopeful. Clearly in Canada biologicals are easier to come by than in Australia 🙂 . I’m glad Humira is working for you…gives me hope!
If rheumatoid arthritis is a part of your life, keep a daily diary. A diary can help you to understand the things in life that trigger your arthritis flare ups. It can also help you to understand what helps. You can share this information with your doctor to help him best prescribe treatment options. It is a valuable tool all around.
Thanks Aditya – great tip. I do actually keep a diary of my daily pain levels, and agree that everyone should do it. Great advice!
Just started my diary today. I guess I kept thinking…Maybe they are wrong…Maybe it will go away..