from Christchurch, New Zealand. I have been recently (finally) diagnosed with PsA. I found this very helpful site a few months back and have enjoyed reading the many comments shared.
I have all the usual miserable symptoms that have escalated over the past couple of years, especially tendonitis, swollen joints and a painful back, and itchy flaky scalp. Looking back over 20 years ago, PsA must have been attacking me then although I didnt know what it was. I had a painful swollen lump on my left achilles tendon that was operated on and that helped with the pain. Since then Ive had two years of misery with my right Achilles that was treated with a months worth of Prednisone recently. The temporary relief was wonderful, I could walk normally for the first time in ages. Sadly after four or five weeks of being pain-free, it crept back in. Rheumy reluctant to prescribe me any more. She has not given me anything else other than to suggest Naproxin but I try to avoid anti-inflammatories as had to take them for three years straight leading up to a hip replacement in 2008 and Im worried about taking any more. So I just live with the pain and hide away for a good cry every now and then. We have a free public health system here in New Zealand but sometimes the waiting list for specialist appts and surgeries (if needed) can be long if condition is not life-threatening.
Im about to book an appt to see an eye specialist as Ive read various comments on here saying PsA can attack the eyes. My question is, which type of specialist should I see? Just a regular optometrist? Thanks in advance for any tips.
Hi @MillieB! Youāre ophthalmologist would be the ideal person, as they have the medical training to understand how systemic disease can impact the eye. See https://www.medicinenet.com/script/main/art.asp?articlekey=22559
As long as there are no specific concerns, you donāt need to get any more specialized than this. Over the past 10 plus years I have had to be sent on to a specialist in New York City once, for testing that wasnāt available locally. Thatās it.
Hi Stoney, thanks so much for your reply. Ive booked an appt with a regular optometrist for next week so I will see her first and get her advice. She may recommend someone. I havent had an eye check for 25 years (shame) so well over due for a check. Eyes are failing and my K Mart glasses are just not doing it anymore lol
I was on Plaquenil, so they were giving me a full work up every year, they photograph the back of the eye, check your spacial vision, check out the macular region for degeneration, etc. They can see any inflammation with the imaging. Good luck!
Gidday MillieB, and welcome, from a fellow Kiwi 
Iām in the North Island, oh, but I do love the South Island, some gorgeous places down there
When I had issues with my eyes my GP told me to go to an optometrist, it seems to be the way things are done here NZ now, and the optometrist can refer you on to an eye specialist if they feel it is necessary.
Oh, I understand what you mean about the K Mart glasses 
thatās the sort of thing I wear too, cheap and nasty, but great while they do the job
I do understand your reluctance to go back on anti-inflammatories, however, (and this is only my opinion) the fact that you had such a good response to the prednisone, I would think, would be an indication that inflammation is a big part of your joint issues, so the naproxen may just help with that and I suspect your rheumy will want to know if you noticed any difference while on them. Unfortunately there is a process here in NZ that we need to go through of trialing and failing a number of medications before we can be offered the next level of available medications, and most of the meds take a while to take full effect, so it seems to be a general thing to trial something for 3 months before you can be sure if it might help or notā¦ I think the first level is to trial 2 NSAIDS (the naproxen would be your first)ā¦ prednisone, while effective, is not good to take long term, or in high doses unfortunately (it is the only thing that I have found really knocked my pain levels too), this is another reason your rheumy would be reluctant to prescribe you more.
The best advice I can give you right now is to read through as many of the threads on this forum as you can find the time to, and learn as much as you can about PsA. One of the things you will notice around here is a saying that gets repeated over and over, āFear the disease, not the drugsā, this is something it has taken me a while to come to terms with, but I have come to a point where I can definitely see itās value.
Do hang around with us, and keep us up to date with where things are going for youā¦ itās great to have another Kiwi onboard, there seem to be a few newbie Kiwiās joining in lately.
Hi Janson and thanks for the nice welcome.
I appreciate your help regarding meds. Ive had a fear of antiinflammatories for some time after I had to use them for quite a long time, but seems I will have to go back on them if my pain gets any worse. Up till now Iāve just put up with it. To complicate things more, I also have NAFLDā¦ non alcoholic fatty liver disease, so Iām pretty cautious taking any meds so as to avoid more liver damage. Oh well, I will have to weigh up the lesser of two evils. I do have some good days but they are becoming few and far between. The hospital rhuemy I saw said sheād see me again in 6 months time. Is that a normal period to wait between appts? (Just had a sharp jolty quake while sitting here!!) 
Welcome, MillieB! Prednisone is fun stuff when itās working, but sometimes I wonder is it worth it to feel good for a few days or weeks just to feel worse than ever when it wears off? Good decision not to bother with it anymore. I do agree the Naproxen is some wicked stuff, too. 
Donāt you wish someone could just wave a magic wand and poof no more PsA??? Oh well, there are so many inflammatory diseases and other bad things, I guess itās just the luck of the hereditary draw!
I had better luck with Ibuprofen when I had bad back pain, but itās also an NSAID. Itās easier on my stomach than some of the naproxen sodiums. I get you where you just donāt want to put any more of that stuff in your body, though!
Six months is the usual spacing of rheumy appointments, at least in my neck of the woods.
I hope you do okay in the meantime. Good luck!
Hi again MillieBā¦ If you have concerns regarding the naproxen and the NAFLD check with your pharmacist, or GP, to make sure it is OK to take it, was your rheumy aware of the NAFLD when prescribing the naproxen?
We are good at just putting up with pain, Iām not sure that itās always a good idea to do so thoughā¦ especially if that pain can be a sign of the PsA potentially doing damage to joints, thatās something I think we need to consider as itās not always an option to fix once itās there.
At the moment my rheumy appts are usually 3 months apart (one was supposed to be 2 months but the appt was never made, so it ended up being 4 months, and only then because I phoned the hospital 
). I am wondering if you are able to phone the rheumy nurse at your hospital to discuss issues/concerns you have, I was only told I could do this at my last appt. it certainly makes a difference knowing I can do that if I need to, I had really felt like I was out here flying solo between appts. until I got that number 
Gosh, I just checked out that quake you had on geonet, a 4.0 You guys down there must get so sick of the ground shaking all the time, not to mention it rattling your nervesā¦ I went through a 7.3 in LA back in '87ā¦ couldnāt wait to get on the plane out of there and head for home, Iām sure I even let out a big sigh of relief when the planes wheels finally lost contact with the shaky ground
Hi janson, I dont remember telling rheumy about liver prob. I probably just assumed it would be on her computer along with my other med history sent through from my GP. I. Do remember her saying hospital would send me another appt in 6 months time but I could call earlier if I had any concerns so I will do that. She did say ātake the Naproxan (I told her I already had some at home from another time) as once you start on other harder medications, youāll be on them for lifeā I left wondering what exactly that meant, almost as though sheās saving me from what possibly lies aheadā¦lol. She didnt say those medications could slow the damage PsA could do. The CHB is pretty cash strapped so maybe they are reluctant to prescribe costly meds. Yes the quakes are pretty scarey, especially when youāre living in an already EQ damaged houseā:fearful:
OK, so it is possible the rheumy is not aware of the liver issues at this stage (not always does all information get passed on)ā¦ yes, definitely do phone the rheumatology nurse and double check that the naproxen is OK!! And please do let them (the rheumy nurse, rheumy, whoever) know just how bad things are gettingā¦ us kiwiās are all too good at making light of things, not always wise.
As for the potential for joint damage from PsA, there are some posts floating around where people did not get treatment (for one reason or another) and have been left in a very sorry state as a resultā¦ NOT saying that is what WILL happen to you, it is good to be aware that it COULDā¦ PsA is not always as innocent as it was once thought to be, and can be a nasty little beastie for some, so please do learn all you can so you can go to your next rheumy appt well armed with heaps of questions 
All of our hospitals are strapped for cash but when it comes to meds itās pharmac that make the rules as whether a medication is funded or notā¦ just for your info do have a look at page 5 of this document: http://www.pharmac.govt.nz/2018/01/01/SA1620.pdf
It shows you the tick boxes that need to be filled before your rheumy can apply for Enbrel (at this stage I think Enbrel is the first biologic you can be offered, here in NZ, for PsA), and it seems the biologics are the best option for slowing/stopping this disease in itās tracksā¦ as you can see though there are a few hoops to jump through before we can even be offered such medications. Most of the meds require a trial period of three months each (at the recommended dose), so it can take time to get to a point where you are offered the more expensive biologics.
For me, my GP started me out on ibuprofen (I would have probably had more response from sucking lollies ), then it was on to tilcotil (the next grade of NSAID I think), I do have some benefit from that and my body lets me know pronto if I miss even one. In the meantime I had a good response in my joints, fatigue etc from a round of prednisone I was given for asthma, and as I wasnāt able to get a rheumy appt at the time my GP started me off on Mtx (which has helped skin and arthritis in hands and a little improvement in the fatigue). December rheumy appt they added Leflunomide to the mix too, if there is no response to that Iām hoping theyāll be able to look at Enbrel at my next appt in March, by then it will be 2 years of constant pain/stiffness in ankles and feet, as well as regular issues with knees, hips, shoulders, elbows, wrists and hands, oh and long standing spinal issues tooā¦ itās a long drawn out process, more so as I donāt have raised ESR or CRP in blood tests.
From what I have read it would seem the lasted medical opinion is the earlier aggressive treatment can be started the better chance of getting the PsA under controlā¦ My guess would be by saying that once you start on the harder meds you are on them for life your rheumy was probably trying to let you know PsA cannot be cured, therefore yes, it is a lifetime thing, it can however be controlled with the right medication. Do you know what she based her diagnosis on? Was it something she found in xrays/ultrasound/tests, or was it on examination?
Iām not surprised you find the earthquakes scarey!!! Having been through those bigger ones you had down there would have left you pretty rattled, and I imagine everytime the earth moves now you would be wondering just how bad it will get and how long it will lastā¦ even more fearful in an already damaged house!! I really do feel for you on that one!!
Do ring the rheumy nurse next week, and please do let us know how that goes for you!!
All the best!! Kia kaha (stay strong)!!
I really donāt mean to frighten you by telling you all of this, just trying to help fill you in on what MIGHT be the reality of where this MIGHT go. Of course, not everybody will be that badly affected I guess.
And that might be the answer to all your prayers, MillieB! Enbrel worked really well for me and millions of others. I never knew it was lower priced than other biologics, as Iām pretty sure itās several thousand $ a month! Biologics can be hit or missāfor me it worked well and quickly, for others it can take several weeks to notice any improvement. I guess Iām jumping the gun a little, but when you do get a biologic, Enbrel can be very effective.
I can only hope they will prescribe it to me and that it works.
Have any of you with scalp psoriasis notice hair getting thin?
The hair at my temples is feeling and looking rather sparse. Only in an area approximately 2" each side but its getting me worried. Thats the area thats quite flaky and itchy. Golly whats next!!! I hate to thinkā¦
Firstly, thanks so much for all the information. Iād sooner know the grim facts over the sugar coated and if it turns out not too bad Iāll be pleasantly surprised lol
I dont know what she based her diagnosis on exactly, whether blood tests or x rays. As I have no insurance Iāve had to go through the system, first with a Malaysian rheumy then next visit, his assistant from Taiwanā¦ā¦both lovely but with very strong accents that I struggled to understand. Iāll try and be better prepared next time and ask more questionsā¦and jot down notes if needed. I was told by my GP that if possible, see a Rheumatologist privately if finances allow, as treatment and support will be top notch. She doesnt seem to have much faith in the public system. I donāt know what to believe about that. I mentioned in a reply to another poster that I was also losing my hair in places due to scalp psoriasis. If you have any info on this Iād be thankful to know.
We moved back to Chch three years ago after 10 years on the coastā¦goodbye to the rain, hello to the shakes. But we get used to them donāt we? Have taken to looking at the ceiling whenever we get a shake, wondering if the poor old house is going to cave in hehe
Happy to help where I can 
Iām fairly new to all this too, Iāve really only been looking in to it for nearly 2 years, since my ankles got bad for the first time, but have done heaps of reading in that time, I can speak only from my own experience to date and what I have gleaned from what I have read, so if any one else wants to chirp in on anything, please do!!
Iām pleased you have understood where Iām coming from as far as trying to show the potential seriousness of PsAā¦ I have come to the conclusion that this is not to be taken lightlyā¦ Iām one of those awful people who always likes to know the worst case scenario, and hopes it never gets that bad (it usually doesnāt lol).
One thing I forgot to mention on the rules around getting a biologic here, there are ways that rheumyās can apply for them without having to go through all the meds to get there, but they will only do so if they really feel it is urgent that you try them I think.
I too have to go through the system for these things, $'s are always tightā¦ Iām not sure if going private means you get better service as such, but you can definitely get seen more quicklyā¦ like most places we have a real shortage of rheumies, so appts through the public system can be few and far between.
Oh gosh, I understand what you mean about strong accents being an issue, if you donāt quite pick up on something they say donāt be afraid to ask them to repeat, or have them write it down so you make sure you understand what they are saying. I have slight noise damage to my hearing and can find it really difficult to pick up on some accents.
As for your hair thinning, I donāt know much about that, a quick google search would suggest that itās not so common with psoriasis, although scratching can leave thin patches that will generally grow back in time, I donāt know how accurate that is though. I have noticed my hair does seem to have thinned generally, but I assume thatās probably from the Mtx, itās not too bad, and most people wouldnāt notice it, so as long as it doesnāt get really bad Iāll just put up with it, would rather have thin hair that painful joints
While itās true it is possible to become desensitised to things like earthquakes when you are regularly exposed to them, I imagine it would still be very unsettling when they do hit, at least until itās over and you know yourself/family and home are all OK.
All the best with being able to move forward with treatment for your PsA!! And donāt be afraid to ask your GP, rheumy or pharmacist if you have any concerns that crop upā¦ theyād rather tell itās nothing to worry about than have to treat something serious that has gotten out of hand because they didnāt know it was going on.