They sure have strict guidelines. I didn't have to take any Sulfasalazine, MTX or nothing. Just a long history of psoriasis and psoriatic arthritis. No inflammatory markers in my blood work, either! I know it's a government thing and sure there need to be criteria; but, like someone else said, you have it in your symptoms....it's pretty clear you are in need of a biologic. Sounds like they're moving in the right direction, just not as quickly as would be nice for you! Here in America, the estate pays for the aged care (nursing home), after that the government will take over. They won't ask the children to pay for it--other than from their inheritance, which is what we did for my husband's mom. She scrimped and saved for many years--lived tight so she could provide a nice "gift" to her children when she died. Little did she know the nursing home took up most of that. But, that's okay, the tax payers can't pay for everything.
Good luck and take care--sorry about all the sadness in your life right now--lots of stress!
Becstar said:
Wow guys, thanks for all the support. It has been a tough few days, because not only am I dealing with all this, but my Mum has just gone into aged care and we have just finished packing up and selling off all her stuff and putting the house on the market, which will enable us to pay for her accomodation in the aged care home. (Yes another Aussie requirement). Fortunately that is now in the final stages. The cleaning crew come in tomorrow and the Real Estate team come for photos on Monday next. OK. Here in Aus biologics are in the $35-50,000 per year price range. If it can be demonstrated to the govt overseeing group, the PBS (Pharmaceutical Benefits Scheme), that it is necessary for me to take the drugs, then I will only have to pay $30-40 per month per prescription, as I do for most other meds. If I was a pensioner that price would be $5.5@ per script. Once you reach a safety net amount determined each year, I get my scripts at the pensioner rate, and pensioners get theirs for free. Re the hormone thing, that is a thing of the past. All my womens bits are long gone. I have no idea when my hormonal cycles are so that is not going to work, but happy to work on any diet advice - thanks for that. At this stage I am using up a chunk of long service leave, and I have 20 years worth, so there is still about 3 months leeway there for me, and if I get on top of things I can build that up again onpver the next 5 years. All in all, I just hope it is all worth it, because I have only once had a high (ish) reading. Thanks for the support xxx
Hi Frances - I'm not having a great day today.. I didn't sleep well last night and have woken in lots of pain this morning so thought it prudent to go and get a blood test done while I was not wonderful. I still have a long way to go on the steroid ramp down. I guess I can get a rest every day next week (fingers crossed) I just have to get off these drugs and hopefully meet the criteria for biologics over here.
Too ill to read every post, but did want to respond that due to liver issues, I can't take NSAIDs, so prednisone is the anti-inflammatory of choice. I'm on 10mg daily. Remicade was treating my liver issues, but I was taken off, so if my liver values go up, I'll be put on 80 (yes, eighty) mg of prednisone daily as treatment for my liver. God help my family if it comes to that!!!
I hope you can get on biologics soon - Remicade, while it was working, was a life-changer for me. I never thought I'd hike again, and was able to take some wonderful hikes before my body decided to further revolt. :)
Hi Guys. I am sitting here at 2 in the morning local time, in so much pain I want to cut my legs off at the hip <sigh> I am now off everything except MTX,Paracetamol and Ibuprofen and that is about it. I think a trip to the GP is in order in the morning.. I can barely walk, with my left knee blown up like a balloon and my right foot likewise. My wrist is so sore that I am typing one handed. I have MRI, CT and US booked for next Thursday and should be able to go back on something serious after that, so I am hoping that I make it till then without murdering someone.
I’m sos sorry to hear this … wait, in a way it’s a good thing because it will probably mean that you will get aggressive therapy in the long run. It’s now obvious how serious your disease is (as if I didn’t know that before … but still.) And you know that too. But it doesn’t make it any easier to bear right now, at four a.m., does it? I’m glad you came here to share with us: that’s what we are here for. Sorry there wasn’t anyone to chat with when you were here.
Thinking of you, Becky!
C
PS Do your best not to murder someone, as I doubt that your government would dispense biologics in prison.
I went to visit the Rheumy RAMS clinic last week and endured MRI (with contrast), CAT, and Ultrasounds, and was destroyed when they found nothing terribly conclusive and blood results not terribly helpful either. I was taken off everything except MTX and sent home on extended leave to see what happened.
I felt crap this morning and I literally just had a call from my Registrar. My ESR made it! I won't know until Thursday when she is able to consult with the Attending if they are going to try and get my CRP up as well, but it might be enough. It seems they believe that one will follow the other.. Either way there is an end in sight.
I have been pretty quiet for the last week because I have been in a world of pain. I have discovered the relief of using a walking stick, which was totally a life changer.. I did take a couple of suggestions "that might have been internet chatter" which seem to have worked.
I am sitting her crying with relief and laughing and not entirely sure why.
It is a bit of a surreal day here in Australia, because I am sure you have heard of the The Sydney Siege aftermath and that is all that is on the TV news feeds. I am sure some of that is mixed in my reaction.
I was worried that this was all for nothing, but Anyway, I will keep you informed.
Oh - quick question. I was asked which one I wanted Humira, Enbrel or Simponi - Form the fact sheets I have I can't see a lot of difference other than the frequency of doses. Pros and Cons?
If you have systemic, eye or bowel symptoms it is far more likely Humira (and my rheumy says simponi as well) will be effective.
If these aren’t issues, then Enbrel is known to be very effective for PsA with a few less possible side effects (which doesn’t mean it will be better for you - but statistically is not / not as often associated with things such as autoimmune hepatitis).
Also, with a shorter half life, my rheumy preferred to try Enbrel first (ie if something goes wrong it is out of your system faster). Enbrel was great for my arthritis (though humira has been even better), but with Enbrel, as I tapered off steroids, my eyes and bowel started to go rather pear shaped… So we switched and I’m happy with humira.
Other than that comment, which is mostly anecdotal when it comes to PsA, (though well supported in related illnesses such as autoimmune intestinal or eye problems), I’m not sure there is an easy way to see who will respond to which medication yet (the researchers are working on it).
Hi Becstar, I've taken Humira and (currently) Simponi and they both need to be stored between 2 and 8 degrees C. I wasn't aware that Enbrel was any different. The Humira nurse did tell me that in the event my injection co-incided with travel that the bio did stay viable out of the fridge for up to a couple of weeks .... but ideally kept in the dark and still cool. Whatever you choose the providers will advise you on travelling/storage requirements and if you're going abroad will supply coolpacks and letters explaining what you're travelling with and why etc.
Becstar, I’m glad that you seem to be making some progress, but what you’ve had to endure to get that! When I was given the bio choice, I picked Enbrel because it’s the oldest (and therefore the best known) of the lot. I’m not sure about storage for the others, but I just keep Enbrel as cool as possible when I travel.
Jen, what do you do with your Humira when you go on your very long trips?
Let us know what happens next, Becstar. And meanwhile, take good care of yourself.
Today I took my 2nd dose of Enbrel. I feel very optimistic because early signs are that I am going to respond very well to this drug.
I have been very quiet for the last 3 months because I have been in a world of pretty much total pain and retreated into my comfort zone. Bed/bad movies/soppie books and chocolate.. The docs wanted to get my CRP up, despite my ESR managing to fly over 30 several times. I came off all my drugs - slowly and gradually - and painfully. Until a couple of weeks ago I just broke down when I was at work and collapsed off my chair in tears of pain and had to be taken home/GP for sedative and pain relief. Long story short - that day my ESR was 36 and my GP handed me her phone and told me to cry at the Specialist. 2 days later the new joint count (now higher) was added to my application for Enbrel,.and off it went for approval. I was told a 2 - 3 week wait, but 10 days later it arrived in the mail with the red stamp of approval for a 4 month trial
My local pharmacy had to order it in so 1st dose was last Friday. I watched all the DVD and read the book and was feeling pretty comfortable with administering it myself but decided to head up to the local GP clinic, catch up with my GP and then take my first dose under the supervision of the clinic nurse. I figured that if I had a bad reaction I was in the best place, and if I went to muck it up, she would sort me out. I shouldn't have bothered. It was way too easy.
I guess it was 24 - 36 hours later that I started to feel somewhat optimistic. I have felt that a cloud of fog and general weariness had been blown away from me. Don't get me wrong. I still have pain. Just not in every fiber of my body. My mind is also crystal clear..
I am convinced already that this is the drug for me. I will keep you posted
Becstar, this is phenomenal news. Rest assured, our fingers have been crossed for you for months. And you know that finger crossing is painful for some of us. LOL
This is the kind of response I got after a couple of shots, although I think you are getting a bigger bang than I did. But even the “flutters” of energy and the clouds of fog clearing was enough to make me feel optimistic and hopeful. And that feeling alone can help you bear the symptoms that remain for now.
I am so glad to hear this. I’m still angry, though, at how many painful hoops you had to jump through to get to this point. (As if you could jump at all, in your condition!) The words “cruel and unusual” spring to mind. Still, all’s well that ends well.
Here’s hoping for a continued and strong response.
Hey becstar that is great news :) I am really happy for you .... as best you can try to forget the awful journey behind you and look forward to the brighter future.