Hi from a newbie in Western Australia!

Welcome Greetings and Introductions
1

Hi, my name is Nadia and I found this group from many many hours of googling and looking into my new diagnosis. Its great to have found a group dedicated to PsA!

I am 38 and a wife, Mum to 4 kids ranging from 6 - 13, and a part time Special Needs teacher. I have always been pretty active and busy, so having PsA has been a hard road to travel.

My story didn’t start too long ago. I woke up one morning in January this year (2017) with a very sore and stiff neck. I put it down to a recent trip to the Northern Territory and a bad bed. A coupe of days later I woke up with hip and knee pain. I decided to just get it checked as I needed to get my scalp psoriasis checked as it had flared (I think to a very hot and humid time in NT). At my GP I mentioned my sore neck and body, so she ordered some blood tests. The bloods came back with a elevated inflammation level and low white blood count. She straight away wrote a referral for a rheumatologist, saying she hoped it was just viral, but that if it was more that getting to it early was important. I went away from that appointment coping with ibuprofen, so at that stage was pretty sure it would just pass.

Over the next two weeks I got progressively worse with new pain in all sorts of places every couple of days. So I was back and forth to my GP who put me on some varied courses of steroids and anti- inflammatories.

Long story short, in the 6 weeks I had to wait for my rheumy appointment, my pain levels continued to climb despite all the different meds. At my worst I could hardly get out of bed, my 13 year old son was doing my hair in the mornings, my 6 year old opens jars for me, and I could walk only a couple of steps before needing to sit. My worst pain has been in my neck, left shoulder (cant lift my arm), fingers and feet, but most of my joints are effected.

Anyway, my rheumy has been great and it wasn’t a hard diagnosis, helped by my ‘sausage toes’. She gave me a steroid injection in my arm which did nothing, put me on indocid, which has helped lots (the suppository at night makes the morning school rush manageable) and I am now 4 weeks into taking methotrexate.

I am not able to work, so have lots of time to research, though it isn’t always helpful - just confusing! So great to have a forum like this to help sift through the mountains of sometimes conflicting information!

2 Likes
2

A huge welcome to you Nadia!

So pleased you have got a quick diagnosis (though the fast onset that got you there sure isn’t much fun), and a Rheumy who is taking action straight away.

You are in the right place, there are some fantastic people on this forum who are great at encouraging, motivating, and informing, all at the same time, and there is always someone here to listen.

It sounds like you are doing all the right things, and it’s hard work, particularly while you are in The Gap (you can search for that in these pages, and Seenie, who is an expert as she spent so long there, may well chime in). Having such a big change so quickly, and with kids, can be such a big upheaval to your whole families life.

But it does get better :grinning: Keep researching, asking questions here, and make sure you check out all the stuff in the newbies guide.

The Australian system can be a bit tricky to navigate, if methotrexate or one of the other conventional DMARDS is not enough, so make sure you reach out to the other Australians (early - cause everything takes time in our system), if you have any questions.

Again, welcome, its great to have you here.

1 Like
3

Hi again Nadia, that’s so rapid an onset…sounds hard but glad you are getting treatment so quick. Ditto to Jen75, feel free to ask about Aust stuff. My journey has been very different to yours and consequently I have had plenty of time and experience researching the Aust system.

1 Like
4

Its nice to find some fellow Aussies! And I will definitely ask questions as they come up!

5

Hi, Nadia

You had a rapid and nasty onset, but that is a blessing, really: it was clear that there was something very wrong, and that made a diagnosis quicker and easier. Many people here had intermittent symptoms for years, and a lot of experience with shrugging doctors scratching their heads. After a while, you start thinking that you are a neurotic nutcase! Be glad that you know what you have, even if what you have is no fun.

Now that you know, you can learn as much as possible about PsA. And you need to, because many doctors assume that it is RA with a rash. It’s not: it is a different disease all together. Here is a good book that is a little old and out of date on the latest biologics, but it’s the best resource that we know of for a quick-study of PsA. The kindle edition is cheap, and you could be reading it on your computer within a few minutes if you want.

No, I don’t make a commission from selling the book, although my one claim to fame here is that one of the authors, Vinod Chandran, was the rheumatologist that gave me my life back by getting my disease firmly under control. Unfortunately, that was after fifteen years of being undiagnosed, several doctors who thought I was a whining OCD nutcase, and three joint replacements. Never mind … we’re moving on, and my personal mission in life now is being an advocate for early diagnosis and aggressive treatment of PsA. There. Gave you an earful!

Glad you joined us! Aren’t you? (After this post, maybe not? … LOL)

Seenie

1 Like
6

Its funny to be thankful for my rapid onset of symptoms - but it is so true! I cant imagine going back and forth to doctors with no diagnosis for years! Thanks for the book referral, and for this community - ive only been on it for a couple of days, but what a blessing to find people going through the same! I have a very supportive family, but its not the same as people who ‘get it’!!

So thanks all!

1 Like
7

Hi Nadia,
Sorry about the “surprise” onset of PsA that sort of threw you for a loop I imagine! I just hate to hear when a young person like yourself raising kids has to go through all that! I was one of the lucky ones whose disease came on slowly, sort of snowballing over many years. It was very manageable for a long time and I think a lot easier than had it hit me hard all at once. It’s great that you found this site and your doctors are on top of getting you the right treatment. Hopefully, you’ll get a biologic and it’ll enable you to get back into a more normal life again. Thank God for the kids–they can really come to a parent’s rescue when you’re down and out!
Hang in there!

8

You’re very welcome, nadia. We’re glad you’re here, and glad that you’re glad too! :wink:

Seenie

9

Thought I would give an update and would love any feedback to see if this all sounds good. Went back to my rheumatologist and she wasn’t too impressed with my progress. It is still early days on methotrexate (just 6 weeks in) so she said often she would wait and give it some more time. However because of the severity of my arthritis and the impact on my life she said she wants to hit it hard and then work at reducing meds, rather than waiting around and wasting time. She also said if I need to get onto a the bigger drugs (I’m thinking she means biologics?) I have to exhaust a few options first (gov requirement), so by starting on a new drug now I will have to wait 3 months. So she is keeping me on methotrexate and has started me on luflunomide 10 mg a day. She has also organised a second steroid injection in my shoulder, but this time straight into my joint, under a ultrasound, rather than in her office. I still take the indocid daily and this is really what keeps me upright and moving at all. Some of my pain has been reduced on the indocid (I realised when I thought I would brave it and missed a dose that it was the only thing working!), but new areas have popped up - most notable is two fingers that have blown up and my wrist.

One positive I haven’t had to deal with any side effects really!

2 Likes
10

Awesome that you didn’t have any side affects! And i do think it’s good that your reumathologist wants to get through the gap as soon as possible! I really hope it will help soon!

11

IHi Nadia and welcome!

I’m also in Western Australia :australia: and know a bit about the system here so do ask if you have any questions.

I’ve got PsA and uveitis (diagnosed last year but having suffered for a few years on and off)
I’ve been on MTX and Arava, plus most of the anti inflammatories and now on prednisone and Humira.

I am in a miserable flare at present, despite having started the Humira a few months ago. Ophthalmologist is going to give it a little longer before changing. I’m praying it will start to work!

I also take pred eye drops every hour plus other eye drops - my entire life now is consumed with medical ‘stuff’ and I hate it. I think I’m still in the grieving part of the process and probably due to not having much success with getting the drugs right and it all takes so long…

I’m 49 and have 2 kids - 10 and 6 years old, so life has been tough for us all this past 18 months BUT I am alive and can still see so I try to be grateful :heart:️

I hope that you continue to come here - it’s been a wonderful source of support and strength for me. Real life friends care of course but you just can’t moan and whinge as much as you can to an online friend! Haha

Best wishes for your treatment and look forward to hearing that you have been going well.

xo

12

PS my sausage toes nailed the diagnosis for me too!!

13

All sounds good to me! Biologics can make a big difference but invariably there are hoops to jump through first. I like the fact that your rheumy is pushing things forward accordingly, it’s pragmatic. And I also like the fact that she’s explaining her thinking to you. Yep, sounds like you’re doing pretty well all things considered.

14

Yes Sybil, she does seem to be good - she is always telling me - ‘we will get you better, it might take a while, but we will get there’ which is always encouraging!

15

So nice to find someone else in Perth!! I’m SOR, you? It must be so hard to have your eyes effected! I cant imagine that.

I am seeing Dr Nicola Cook at the Wyllie Arthritis Centre in Shenton Park.

I know how you feel about the medical stuff taking over your life - though the eye drops take it to a whole new level. I’m now taking 6 different drugs during the week, and I never really took anything before all this happened.

Was it hard to get on Humira? From reading other posts there seems like there a few hoops to be jumped through - and not just previous medications. And what is the cost, if you don’t mind? So far the PBS seems to make everything pretty affordable, though I’m starting to have quite an assortment on half finished drugs that didn’t work.

My rheumy has been great, and ensures on every referral she writes in bold - 'bulk ‘bill’ so I can keep it as affordable as possible. Not having health insurance makes it difficult!

Have you found doing anything else has helped at all?

Its been so great to be on this forum - its all so overwhelming, and I always forget to ask the right questions in my appointment, and while my rheumy always tells me to ring her any time - I find most my answers here, and then some!

So thanks for your reply!! And all the best to you too!

1 Like
16

Hi Nadia, there are certainly a few hoops to be jumped through in Aus for the biologics, though with a Rheumy supportive of that path, you should do just fine. I was away from the forum for a little bit over the last couple of years, but I hear that Koala has plenty experience of this :grinning: (I did it a few years ago now, Brisbane).

As you say though, the PBS is a beautiful thing! Out of desperation I paid full price a couple of times for both Enbrel and Humira (only to be done if either your life or your income depends on it - and even then, it will still be a BIG decision), so the $38 per month on the PBS (or $6.20 on concession card) is pretty special.

But, at the end of the day it’s all about finding what works for you - and there are many who do really well on some of the more conventional DMARDS, which is also great. Pleased your Rheumy is being so proactive - that is a big part of the battle :grinning:

1 Like
17

Thanks Jen75, can I ask why you needed to pay for Humira and Enbrel yourself? Is it not always covered by PBS? $38 per month onn PBS is great!

18

It is, as long as you have been through said hoops! I wasn’t always the patient saint I am today :stuck_out_tongue_winking_eye:

2 Likes
19

I should also say not all Rheumys are supportive of biologics - particularly here in Australia - and they have their reasons for that - the biologics may not suit every situation at all. That does mean we tend to be a bit more conservative in our treatment overall in Australia, so when patients look like they might need biologics, there can still be a substantial lag time, and things are not always as straightforward as they sound like they should be.

It really doesn’t sound like you’ll have that experience though, but we are always here to talk to if it starts to seem like that’s the path you need to go on and you keep having hurdles (or brick walls!) put in your way :grinning:

After all, the Rheumys wouldn’t be doing their job if they were making the taxpayer pay 20k a year for a medication that wasn’t really needed (hence trying lots of conventional medications first), or wasn’t really working.

3 Likes
20

Hi everyone!! Good to hear back from you Nadia. I’m NOR close to city.

Yes, It was looking like it was going to be hard to get on Humira. I did the 6 months on mtx and arava, and I was sort of hovering around the edge of qualifying. I was at this stage still limping badly and in lots of pain/swelling.
(Lots of people with PsA have normal blood tests and while mine were always abnormal they weren’t particularly high even when I couldn’t walk with my feet issues)

I’d had a few liver function issues with the two and felt very off, so after the 3 months I went off mtx.

I Was on Arava only but it wasn’t really doing the job (10 mg) so he put it up to 20 mg. After a few weeks on this I had quite a bad flare of joints and my liver function went crazy and I also had the severe uveitis attack. Early Jan this year.

I was put straight away on 60 mg prednisone and after a few weeks everyone agreed that the Arava was not going to be enough and he applied for Humira for the PsA (it’s not approved for uveitis in Aus although it can be done, its harder)

In a way I think I was ‘lucky’ to get it for the PsA, as it was more straightforward, although I needed it just as much if not more for the eye. It costs $38 for a box of 2.
(I also have a cupboard full of drugs that didn’t work or didn’t finish!! and now a fridge full of eye drops as there are loads of different ones too.
some treat inflammation, some dilate the eye, and one I’m on treats high eye pressure caused by the inflammation treatment drops!!!)
But I digress…
I agree with Jen if your rheumy is supportive it’s easier but they are obliged to jump through the hoops, and some people do really well on Mtx and the like for years. Biologics scared me at first but losing my vision and mobility scares me more.

Humira is not working yet - however all the support forums say it can take 3 months so I’m still hopeful!

I’m on 20 mg prednisone which is yet to bring the eye inflammation down. Only 3 days in this time so it should work. :pray:

By the way my eyes are not affected by the PsA as such, it’s a different disease, the uveitis.
They are linked up often though in people who are HLA B27 positive (I am - I’ve been tested this year) it’s a genetic problem, and makes people more likely to develop the so called spondylarthropathies(sp?)

All the best - let me know if you have questions! :grin: Gosh this is long - it’s late - hope it makes some sense

2 Likes