The good news is, that rheumy has decided I am sick enough for biologicals.
The Bad news is that rheumy has decided that I am sick enough for biologicals…LOL
At my appointment today I held nothing back. I told her exactly how rough life has been lately. How much pain, how much disability, how much fatigue I am experiencing now that I am down to 10mg of Prednisolone.
This is very hard for me to admit. I know it’s very hard for many of us.
She still holds out some hope for Arava, but now that I’ve had to reduce my dose of leflunomide to 10mg, due to elevated liver enzymes, it could take up to six months to see benefit.
I have been taking it for four months. The idea of living like this for another two months, hoping for an Arava miracle, does not appeal.
I have been waiting and waiting and waiting.
Waiting for something to work for me. Five long years of daily pain. I have to admit, I am luckier than some…some days are only mild. Most days are moderate. Some days are severe, complete incapacitating. What I call full body mega flares. Or a knockdown day.
I think it’s fair to say that at this point I am experiencing some depression and loss of hope!
So we talked through my entire history, all the medications…plaquenil, sulfasalazine, methotrexate, imuran and pretty much every nsaid under the sun. Several years of ‘just give it another 3-6 months to work’.
Remembering that I have only been seeing new Rheumy for a few months. I saw Old Rheumy for five years. And Old Rheumy is a good rheumatologist. He is just incredibly overworked in a highly stretched Australian Public health system. Anyway, that’s too complicated and political to get into here.
New Rheumy listened. And she is a really sympathetic doc. She is honest, and open about her reasoning, and very good at explaining the facts in a non-emotional, but still caring, way.
And then she started to explain the criteria for biological drugs to me. And why I don’t qualify.
As we talked it through some more, I was able to (very respectfully) ask questions, and give her timelines and facts which showed that I do in fact qualify. Or I just *might*.
And then she said she would ‘just give it a try’ and put in an application, and see what happened. I nearly cried. As I’ve said before, I’m not a big crier. But I felt teary. I tried to hide it. I didn’t want her to think I was nuts! But it means that much to me.
The criteria are basically this.
You need to have severe, active rheumatoid arthritis.
You need an active joint count of at least 20 active (swollen and tender) joints. OR at least four major active joints: elbow, wrist, knee, ankle, shoulder and/or hip. Easy as.
You need to have failed a six month intensive treatment with a minimum of two DMARDs (at the same time) AND have failed methotrexate at 20mg.
This is awkward. I have failed methotrexate convincingly at 10mg. My body cannot tolerate a higher dose than that.
However, I have taken plaquenil (a very mild DMARD) with sulfasalazine, plaquenil with Imuran, plaquenil with methotrexate (for more than three months, but only at 10mg) and plaquenil with Arava for four months. So I can pass this criteria if they accept that I cannot tolerate methotrexate.
You need an elevated CRP or ESR. My CRP has only been raised high enough once. My ESR has been elevated a few times…but it’s not right now. Last time it was elevated, I had been feeling better than I had in months. It’s a problem for many people. Up to 30% of people have completely normal inflammatory markers, and yet have active, severe rheumatoid arthritis. Go figure.
So you see it’s a little dicey. My bone scans and ultrasounds which show active inflammation do not count to medicare. I believe this is very wrong.
But these are the rules. Will I pass the criteria? I don’t know.
For all I know it might come down to the mood of the person who assesses my application on the day.
But as rheumy said, we can only try.
And its worth noting, that if I hadn’t educated myself on the critieria, I would not have been able to argue my case with my rheumatologist. While getting this information was so difficult, I almost felt it is purposefully *hidden*, I did find the information, and I did use it to my advantage. An example of knowledge is power, and we all need to educate ourselves on our illness, as well as potential treatments, and the pathways to those treatment options.
And in the meantime, I have hope again. The depression has lifted. A reprieve, if you will.
And I wait.
Congratulations on finally being able to try for a biologic. I’ve tried Enbrel and it didn’t work for me. Well I should say I had a bad reaction at the injection site so couldn’t continue. I then tried Humira which made me feel worse so I couldn’t continue with that. I then tried another one (can’t remember the name) which was a drug trial and I didn’t finish it because I wasn’t feeling any better but apparently my bloods were….go figure. I then tried Orencia. I did the monthly infusions and was feeling better and then swapped to sub cutaneous injections and steadily went downhill. Now I’m on the last biologic I can try which is Cimzia. If this doesn’t work I’m stuffed. I’m already on 25mg Methotrexate, have tried every NSAID under the sun and have either failed, had bad side effects or been allergic. So Cimzia is it, nothing more for me.
Sorry…..this seems negative. I know several ladies on Enbrel and they’ve all had good success with the Enbrel and felt better. Good luck with it. I look forward to finding out if you got approved and how you go with it all.
Not negative, Michelle. Its just the truth. Unfortunately. Another stupid medicare rule…that you can only try five biologics in your lifetime. What if one of the other four is the magic drug? you’ll never know! Its horribly unfair and stupid. I truly hope that Cimzia works for you. Please post back and let us know. Thinking of you. xox
I wish you the utmost luck & I hope that whoever reads your application will see that you’ve tried everything possible and care enough to put you though for approval. I think these critera are wrong, and stupid, these drugs are meant to be able to put us in remission but only it seems, if we are put on them early enough. All these months trying this and then more months trying that are wasting time that is precious to us and possibly vital to our wellbeing. I am only glad that you went armed with enough info to argue your case well enough to get as far as an application. I have everything crossed, metaphorically of course for both you and Michelle.
Thankyou Gillian. These criteria mean no one in Australia can be treated within the ‘window of opportunity’…the period of most benefit from biological therapy. Its crazy…but I do understand that its hard to tell the difference between someone with a severe prognosis and someone who’s RA will remain mild. My RA was supposed to be mild. It never was. I feel they should take bone scans and ultrasound into account – NOT bloodwork. Would make a lot more sense.
Praying that you are accepted. I have been on humira for 2 years doesn’t take away all the pain but it makes life manageable for me. Its just unbelievable to me that you have to plead and prove your case just to get a biological in your country. Stay stronger and keep fighting you are worth it!
And once you are approved, you have to continue to ‘prove’ your eligability…i.e. that it is working, every six months. I know there have to be rules, but the fact that the biologicals budget is only a quarter spent says to me that they are making it too hard for people to access treatments that could be life changing.
Yay!
or
should I say you poor dear.
Hopefully, they will accept your plea. I have only had female rheumatologists, The first one didn’t have much of a beside manner, maybe it was her culture. My new rheymatologist is very empathetic, “with the drugs that are out there there is no reason to hurt”. She is very mindful of the pain that accompanies RA.
Enbrel has done OK for me. I still take methotrexate, sulfasalazine and diclophenac…but at least I can move. I still have my days…but at least there are days when I don’t feel like pulling the earth over in the hole with me. Now I don’t know what will happen…I am no longer eligible for their “free” program and am waiting to see if I qualify for any other assistance. It makes no sense. They get you hooked, knowing that you won’t be able to pay for it on your own. So here I sit waiting on the “Tin Man Syndrome” to take over…Ugh!
Oh Claudia, I am so sorry. So much worse to be denied a drug that you know helps! I don’t know what to say…its horribly unfair. How do they decide who is eligable for the free program? These drugs are so expensive I don’t see how anyone could afford them without some sort of assistance. Thinking of you xx