Hi Everyone,
I’d love to hear from you all (including some of those quieter members) on this issue.
I’m in Australia. It doesn’t matter how expensive my insurance is - it won’t pay for biologics. Our health system is only designed to pick up the most disabled and terrible situations on the biologics.
So, I’m now 37, rapid moderate Polyarticular (including spondylitis) onset 6 months ago. Very significant career, but more importantly, 2 year old daughter and husband I adore. I would be considered a responder to methotrexate (3 months). In my life that means just managing to keep my job, putting a lot more pressure on my husband than I’d like, and sometimes being able to play with my daughter.
Obviously the road ahead is long, and I have heard that many treatments don’t last for long - because your immune system finds a way around them. So, there are options for me to work the system (there always are:) and try to get on the biologics quickly - another 3 months of methotrexate plus either Arava or sulfalazine (and find a way to fail), I could choose to just pay the horrific amount and go on biologics now, or I could approach it more from the point of view that i should stick with what I’m responding to now, because it’ll probably fail on its own accord soon, and I’ll be forced onto something else.
I should clarify that by “responding” what I mean is the following in terms of functionality;
No disease 2 years ago - 10km walk just an incidental and enjoyable part of Sunday morning, 20 km hike in the mountains would end in seriously sore muscles, but loved it so much the glow would totally overshadow that
No treatment; walking two blocks from the carpark to the office is agony. Need to allow around 20 mins for a 5 min walk. No sunday morning walks with the family, just looking up at the mountains from down on the flat.
Responding to methotrexate; walking from the carpark to the office is just uncomfortable, on really good days I might go for a Sunday morning walk with my family for 2km, and be very tired, but ok at the end.
So, I’m getting over the denial and realizing this is a marathon, not a sprint. I have to be in it for the end game ( I guess I owe my daughter either another 16 years or one big damn payout!)
So, settle for what’s " working" or try for the biologics in the hope they will be better?
These articles from South Africa sort of sum up the problem:
http://www.arthritis.co.za/dmard.html
There is a LOT of good information in them about all the drug classes.
BUT to put it succinctly until we can get insurance companies, pharmaceutical companies, physicians, governments etc to understand a 20% improvement in symptoms from a drug is NOT acceptable, no progress can be made.
Some docs are looking for more, but if someone else is paying the bills......
I mean really, if we took these numbskulls and cut off the 4 of their fingers, how successful would we be in convincing them they had a "good hand"
Thanks lamb, that is indeed a big part of the problem. And then I just wonder if I should toughen up and be grateful for the 20%.
tntlamb said:
These articles from South Africa sort of sum up the problem:
http://www.arthritis.co.za/dmard.html
There is a LOT of good information in them about all the drug classes.
BUT to put it succinctly until we can get insurance companies, pharmaceutical companies, physicians, governments etc to understand a 20% improvement in symptoms from a drug is NOT acceptable, no progress can be made.
Some docs are looking for more, but if someone else is paying the bills…
I mean really, if we took these numbskulls and cut off the 4 of their fingers, how successful would we be in convincing them they had a “good hand”
I don't believe in big brother. S(oooooooooooo. Some docs don't bother with an actual exam. If you think it isn't 20%, whos to know. You may not believe this but I have actually heard of folks who overdone just before an appointment. "Flare? What flare? Todays a good day"
Dear JenAus,
All I can tell you is that I did the SZ and MX with no results, 8th Enbrel shot, and there is a DEFINITE difference in my pain, my motion, swelling, limp, my emotions... The PsA boogey man is not gone, but the Enbrel is my champion helping me fight it off!
Hey Jen,
It's a pain getting the biologics on public isn't it? From what I remember you need to be on at least 20 mg mtx for three months as well as another DMARD for three months and fail them both before they will even consider it. I think the best thing you can do is talk to the rheumy and tell him this is not an acceptable result for you. Best of luck!
Hi JenAus,
I'm in Australia too. I tried all the standard drugs and was on prednisolone for about 9 years. I hated it as it not only has physical side effects, but made me very moody. I eventually went off all drugs to get blood tests that were bad enough to qualify for biologicals. I tired Humira, which was good but stopped working for me and now I am on Enbrel. Life is not perfect. I still have flare ups and still live with some pain, but I do have a life. I can go for walks, bike rides and even have a horse I ride. I say if you can arrange it, then go on the biologicals. They work so much better. My doctor says he would like to start all his PA patients on it, but they are too expensive and the government won't pay for them.
Hi Jen. I guess what you are asking is " how much better can I expect to feel?" While I'm sure that different people get different levels of relief depending on the way the disease is affecting them and how they interact with the medication, I've been living with this for over 40 years. I've been on just anti inflamms like celebrex, then methotrexate, arava, enbrel, humira, prednisone and I'm currently on a mix of prednisone, enbrel and celebrex and osteo panadol. I would say each form of treatment has given me roughly the same amount of relief for a period. It seems that it is necessary for me to have some change in the mix every 12 months or so to maintain a reasonable level of comfort and the ability to do physical things. I had hoped for a treatment that would let me live how I used to be but that has not happened. Learning to accept I am 'disabled' and the limitations that involves and appreciating what I do have and can do has made living easier.
Thanks Emma, that I will do. He’s not a fan of the biologics though - claims they have too many serious infections. I’ve done the MTX so now to add another. I’m a bit hesitant about the MTX Arava combo, because it sounds very liver toxic, so maybe I’ll try sulfazalazine.
Emma W said:
Hey Jen,
It’s a pain getting the biologics on public isn’t it? From what I remember you need to be on at least 20 mg mtx for three months as well as another DMARD for three months and fail them both before they will even consider it. I think the best thing you can do is talk to the rheumy and tell him this is not an acceptable result for you. Best of luck!
Hi Philly, thanks very much for your story. I’m on prednisone to remain functional but am starting to have the same problems - its really becoming something I’d like to get off. I think I’ll do my best to see if I can get through the system. Glad to hear they work reasonably well for you - it must be lovely to be able to ride your horse 
Philly said:
Hi JenAus,
I’m in Australia too. I tried all the standard drugs and was on prednisolone for about 9 years. I hated it as it not only has physical side effects, but made me very moody. I eventually went off all drugs to get blood tests that were bad enough to qualify for biologicals. I tired Humira, which was good but stopped working for me and now I am on Enbrel. Life is not perfect. I still have flare ups and still live with some pain, but I do have a life. I can go for walks, bike rides and even have a horse I ride. I say if you can arrange it, then go on the biologicals. They work so much better. My doctor says he would like to start all his PA patients on it, but they are too expensive and the government won’t pay for them.
You crack me up lamb! Can you believe I’ve actually gone without vitamin D for the last couple of months to see if it helps get my blood work up? (success last time, we’ll see if it is still working tomorrow). Best I take some walking shoes to work and do a brisk 5km before the appointment…
tntlamb said:
I don’t believe in big brother. S(oooooooooooo. Some docs don’t bother with an actual exam. If you think it isn’t 20%, whos to know. You may not believe this but I have actually heard of folks who overdone just before an appointment. “Flare? What flare? Todays a good day”
Thanks Allan, you’ve pretty much hit the nail on the head. Considering myself ‘disabled’ is not coming easily, but I do realize there is a lot of energy wasted in not accepting the situation and always looking for a new solution all the time, instead of making some sort of peace and just enjoying my beautiful family. I’ve never been particularly good at balance, so this could take some practice!
Allan said:
Hi Jen. I guess what you are asking is " how much better can I expect to feel?" While I’m sure that different people get different levels of relief depending on the way the disease is affecting them and how they interact with the medication, I’ve been living with this for over 40 years. I’ve been on just anti inflamms like celebrex, then methotrexate, arava, enbrel, humira, prednisone and I’m currently on a mix of prednisone, enbrel and celebrex and osteo panadol. I would say each form of treatment has given me roughly the same amount of relief for a period. It seems that it is necessary for me to have some change in the mix every 12 months or so to maintain a reasonable level of comfort and the ability to do physical things. I had hoped for a treatment that would let me live how I used to be but that has not happened. Learning to accept I am ‘disabled’ and the limitations that involves and appreciating what I do have and can do has made living easier.
It has only taken me about 30 years of practice to achieve some balance in this. However I do think it is important to accept stress makes PsA worse and so stressing ourselves over it is self defeating. Concentrating on and enjoying the good things still in our lives is healing.
Hi Jen,
The health system in Aus sucks in the severity of which you need to have to qualify for the biologics. I am in the same situation except I went for antibiotic treatment instead of the MTX as a first line of treatment and could also see the long road to qualify for the biologics.
I don't want to seem to be an antibiotic pusher, but all I can say is that I have achieved excellent results in both bloodwork and physical improvement. I was at the stage where it was agony to take our baby daughter for a walk last year, and now I am renovating our new house, going to gym, working a physical job as an electrician with only mild discomfort (As long as I take Naproxen) and now planning to have another child, something which I couldnt achieve on MTX. Plus I can have a few beers and socialise...well maybe not the beers soon if I get diagnosed as Celiac!
I am a fan of getting second and third opinions, you may find another rheumy who is more sympathetic and likely to get you that qualification for the biologics.
Dave
I guess as the public purse contibutes about $450 towards each weekly injection it's about ensuring they help those in the most need. However I found some rhuemo's area lot more conservative about when to apply for the drug.