Help!!
After 18 months on Mtx, (and a big Thank You to everyone who helped me with the diabetes question *mwah! mwah!*)... my doctor is switching me to neotigason... which has a long, long list of horrible side effects.... I'm hoping someone can reassure me that it won't be that bad.... In Australia, you can't go on to the biologicals until you have already trialled mtx, neotigason AND cyclosporine, so I'm thinking that I will be in for an interesting few months....
Hi Nanogirl, I guess Neotigason is for psoriasis rather than PsA, so you are being treated primarily by your Derm?
I haven’t had experience with it (also called acetrin I think), but somebody else may be able to she’d some light, good luck 
Can't reassure you on that one. Its not used in North America. Its strictly a psoriasis drug and has no effect on PsA. You may be able to get out of it if of child bearing years and be unable to use the required two forms of Birth control. You may be able to get out of the "pill" because of concerns with osteo or perhaps a history of Breast Cancer. Condoms generally don't count. Help from a cooperative Gyno or PCP may be key.....
Someone may be able to help you but for the most part psoriasis treatment is secondary on these boards to treatment of the arthritis itself
Cyclosporine is generally only used for a 12-16 weeks blast most places.......
My Dermotologist KNOWS it won't help my PsA, but has to trial me on it anyway..... *sigh* ... same for the cyclosporine.... I have an appointment now to see a rheumatologist, but it's going to be quite a while until I can get in, and I gather that the Rheumy would have to trial me on all three drugs as well, in order to qualify for government subsidies for the biologicals... ...and, unless there is a star in the East and three wise men on camels, there won't be much chance of my needing contraception measures...*sigh*.. Let's face it, I'm flaky (probably in BOTH body AND mind!) wrapped in wrist braces and a cervical collar, using a wheelie walker and living with my mother... not much of a guy magnet there! Good thing I have an great personality!!
Thanks for you help though, I really appreciate your taking the time to reply
Cheers from Cheryl
cheryl, you do have a great personality and a great sense of humor. You might be might be surprised what really attracts guys....... That aside, I'm not totally up on your system and I know it varies dramatically on drug coverage. Whether you navigate the derm side or rheum side to get where you need to be prolly doesn't matter. There are fewer derm drugs to make you sick than with the rheum drugs.
As far as the wheelie cart convert the basket to a beer cooler and velcro a few pork chops apon the cervical collar and hang on. Self confidence and a plate of pork chop will beat a playboy bunny every time.
*Laughing* Thanks for that advice.... I'm thinking that the pork chops will attract something... most likely flies or dogs...
In Australia, the government subsidises the cost of some drugs, but there are always, always conditions attached *sigh* I didn't know about the "try all the drugs on one tier before moving to the next" policy for Psoriasis/ PsA either until the other week, when I saw my dermo and his professional opinion was "Good Grief! You look Rat Sh*t!" (And I paid $185 for that????) and most of the drugs that attract a subsidy have to be prescribed by a specialist, using a restricted prescription... and so the endless red tape of government rolls on!
Hey Ho!! First dose of Neotigason will be tonight- if the chemist can find it... apparently, the consignment ended up at the other end of Queensland due to a shipping error, so I have to wait for it to be sent back to my little corner of the countryside... all part of the joy of country living! Wish me luck
cheers from Cheryl
Hi Nanogirl, got to admit you are somewhat right, I’m sure it takes some special alignment of the stars (and perhaps some coincident Rhuematology golf day? To get biologics here in Aus…).
Key thing is to get yourself educated - google “Medicare psoriatic arthritis” and the same for psoriasis. Read the Aus gov Medicare page (designed for prescribing specialists - you want to know the hurdles they need to jump), and make sure you scroll all the way to the bottom and open the PDF that is the actual application form for initial PBS treatment with biologics - then you can see the criteria that is being used. Now put the two forms side by side, and decide which will most likely get you to a biologic faster based on your specific symptoms.
And remember that some rheumys in Aus hate biologics (hopefully not yours) and will avoid prescribing if at all possible, so if your derm is already trying to get you there, that may be more of a sure thing.
A few more tricks to know; look at the RA form as well - is it possible you’d qualify for that? Now go to the PDF Guidelines for treating to see the number of biologics available for RA vs PsA - see why I’m asking if you might qualify for RA? Family history maybe? (I’m treated for RA according to the PBS).
Also know there can be a few additional tricks - if you’ve had recent steroid treatment then its ok to be below the CRP and ESR thresholds - I needed this trick as I’m never high in these unless I’m dying. If your Derm is good to talk to, good idea to ask them if there is any other criteria on the forms that bother you, whether there is something you need to do about it now.
Sorry it took so long to get this response out - having a sleeping flare at the moment! Good luck and hope your fist dose went well
You mention doctors hating to prescribe biologics, Jen. I’ve noticed the same here: my independent rheumatologist didn’t want to even consider a biologic. I wonder if it’s anything to do with the number of forms they have to fill out and the number of hoops they have to jump through? Once I went to the specialty clinic, a biologic was the only thing that they could suggest. The difference is that at the clinic, there is a nurse whose only job is to deal with the paperwork and administrivia that goes with prescribing a biologic.
I wonder if the workload associated with prescribing a bio is the roadblock? From the governemnt’s point of view, of course, that would be a good thing.
Jen said:
Thanks, Jen,I will definitely have a look at the Medicare information :> :)I don't know how I would cope without this website and "Dr Google" because it sure isn't easy getting any information or help from anywhere else!! I think that doctors, as a species, tend to err on the side of conservatism, which is generally a good thing (!!), but sometimes that means that they aren't too keen to embrace new treatments, and the enormous cost of these drugs doesn't help the situation either. The government uses all of those 10,000 forms as a way of (a) discouraging doctors from prescribing the most expensive treatments in favour of something cheaper and (b) as a way of collecting masses of statistical data, some of which they can then use to claim that not enough doctors are prescribing expensive drugs, so it wouldn't be "cost effective" to subsidise them... Circular argument, anyone?I've had a high ESR and GGT levels for years, even when the medical profession was telling me that my joint pains were psychosomatic (!) Neat trick, eh... getting my blood tests to reflect my mental state!I'm hedging my bets and have appointments booked with both as private specialist (Dr Chris Mack) and a public hospital outpatient clinic... hopefully one or other of them will come to the party!Meanwhile, I'm undergoing the Death of A Thousand Forms to try and get a wheelchair subsidy...EAF (Workplace Modifications) won't pay.... because they are saying I must need it at home as well as work... although I don't get in and out of my chair 40 times a day at home (!!) That's what I have Mum for!QMASS (Medical Aids Subsidy Scheme) won't fund for workplace use... so I will be using the "Risk of Falls" category- even though it's mostly my office chair that I fall out of (DAMN those castors!)CAEADI (Community Engagement Assistance) doesn't fund for workplace use either... So I will be stating that I am missing out on "engaging with the community"... even though I get enough of the community coming into my office as it is some weeks!... so I'm going to send off lots of forms and hope they don't compare forms!!*shaking my head at the idiocy of bureaucracy*Cheers from CherylHi Nanogirl, got to admit you are somewhat right, I'm sure it takes some special alignment of the stars (and perhaps some coincident Rhuematology golf day? To get biologics here in Aus....).
Key thing is to get yourself educated - google "Medicare psoriatic arthritis" and the same for psoriasis. Read the Aus gov Medicare page (designed for prescribing specialists - you want to know the hurdles they need to jump), and make sure you scroll all the way to the bottom and open the PDF that is the actual application form for initial PBS treatment with biologics - then you can see the criteria that is being used. Now put the two forms side by side, and decide which will most likely get you to a biologic faster based on your specific symptoms.
And remember that some rheumys in Aus hate biologics (hopefully not yours) and will avoid prescribing if at all possible, so if your derm is already trying to get you there, that may be more of a sure thing.
A few more tricks to know; look at the RA form as well - is it possible you'd qualify for that? Now go to the PDF Guidelines for treating to see the number of biologics available for RA vs PsA - see why I'm asking if you might qualify for RA? Family history maybe? (I'm treated for RA according to the PBS).
Also know there can be a few additional tricks - if you've had recent steroid treatment then its ok to be below the CRP and ESR thresholds - I needed this trick as I'm never high in these unless I'm dying. If your Derm is good to talk to, good idea to ask them if there is any other criteria on the forms that bother you, whether there is something you need to do about it now.
Sorry it took so long to get this response out - having a sleeping flare at the moment! Good luck and hope your fist dose went well :)
Errrggghhhh.... 5 days on the Neotigason (Acetrin)... I'm shedding skin like a snake- everywhere!.... but frankly, nothing looks much better underneath... and my joints are SO SORE... my neck, hips, knees, feet and hands in particular... NOT HAPPY... grumble... grumble ... Okay! I feel better now!! :)
Congratulations! One down a few more to try. Call your doc. You are experiencing a known and unacceptable side effect of Neotigason ESPECIALLY if it involves your lip and the soles of or your feet and palms of your hands Sore Joints (new) are extremely worrisome and potentially dangerous.
http://xpil.medicines.org.uk/ViewPil.aspx?DocID=7854
Nangogirl said:
Errrggghhhh.... 5 days on the Neotigason (Acetrin)... I'm shedding skin like a snake- everywhere!.... but frankly, nothing looks much better underneath... and my joints are SO SORE... my neck, hips, knees, feet and hands in particular... NOT HAPPY... grumble... grumble ... Okay! I feel better now!! :)
Thanks, Lamb xoxox I was warned that this would happen... I just needed to vent a bit... it's tough being brave sometimes! If things don't settle down soon, I will call the doc and see about going off it, but I'm guessing I need to give it t least two weeks before I wimp out!