Hey, Ruralgal's here!

We have a new member from Australia (NSW). If you click on her avatar or on this >> @ruralgal, you can see here long and interesting profile story.

It all sounds so familiar to me, and she’s one of the “lucky” ones (like me) who didn’t have extremely elevated inflammation markers, and whose pain felt muscular like mine did. Oh, and like @Amos. (My PsA “twin”, although I’m the evil one.)

Anyway, Ruralgal (aka Paula) has lots of questions:

All the information I have found on psoriatic arthritis seems to be generalised especially since I have only been told the general diagnosis and not the refined one. Info on exercise just says walking, swimming, cycling tai chi or yoga. I want to get back to tennis. With the PMR diagnosis there was lots of info on what happens to muscles and recuperating. Is psoriatic arthritis the same- what is causing the problems with exercise?

Ruralgal, welcome here! We have lots of Aussie members, and even a moderator from down under, @Jen75. Jen knows the Australian medical landscape (not to mention the physical landscape) pretty well.

Let’s welcome her with lots of answers or at least bit of sympathy. :blush:


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Welcome @ruralgal, sounds like you’ve had quite the diagnosis journey!

Like you, I have found the information on psoriatic arthritis in Australia to be pretty generalised - and I’ve honestly not found much that was useful on exercise. For me, it was horseriding I wanted to get back into. So, I feel your pain, because of course I looked at the advice online and went… well I like yoga, and that’s fine, but at the start I could barely even do modified sitting yoga, and I could not see how that would get me back on a horse.

I had a lot of tendinopathy, and very little joint swelling. A lot of spinal symptoms (though I was also blessed with large and small joints too!). I say had, because it is rarely an issue now. I am not sure if your rheumatologist has had much of a conversation with you about treatment options, but it is well worthwhile educating yourself. There is lots of great info on this site. In Australia, we first try out all the traditional DMARDs (Disease-modifying drugs like methotrexate and Leflunomide). These are fairly cheap for the government to pay for. If these don’t work well, then you should, fairly quickly (within 6 months of first starting treatment), be having a conversation with your rheumatologist about biologics. These are extremely expensive for the government to pay for (like $25,000 per year). As such, there is lots of paperwork and hoops to jump through to qualify for them. Australian Rheumatologists can be very conservative (both for financial and medical reasons) with these drugs, and I found some resistance initially to getting them prescribed for me. Please feel free to ask for further info on all this stuff - the Aus system is a bit finicky to navigate, and there are a few other Australians on here who have also successfully done this. Hopefully you will get great results from methotrexate and / or Leflunomide and won’t need to worry about these yet, but that wasn’t my experience.

I realise it seems like I have wandered off-topic a bit because I started on exercise, but I haven’t, not really. For me, I found that trying to do anything except that gentle yoga and going for a stroll was just impossible (sometimes walking more than 200m without a rest was impossible), until I got treatment that worked. At the start I nearly killed myself trying to exercise because all the advice kept telling me to keep doing it - I overdid it every time and just triggered off another inflammatory flare. So my experience was that until I at least got a medication that made a substantial difference (like 80% better - the first one for me was Enbrel), then the exercise was not terribly helpful. So do focus on finding out about medications, advocating for yourself, and getting yourself on to something that works.

For me that took 12 months, and my muscles were pretty much like jelly by that time. From then on I did a session with a personal trainer once a week, and committed to myself that it was never about the number of reps or weights I did, but if I showed up, I succeeded. I figured that this really was a marathon, not a sprint, and I had the rest of my life to get good at it! It took a long time, but after a couple of years, I realised one day I was really quite strong again.

I approached horse riding the same way. I went for lessons once a week (as I didn’t own a horse anyway), with a “successful” week being me showing up and getting on the horse. Even if I needed help to tack up, or get on. Now some years on I’m having great fun training an off-the track thoroughbred at my lessons and sometimes I have bad weeks - I just tell the instructor and we do simple flat work.

Everyone is different, but for me I find that the exercise usually causes a small inflammatory flare, even with good medication. I schedule my exercise so that I’m only doing one or two big sessions a week, with a big break in between. At the start, I would actually schedule it so that the day after the exercise was the easiest day of the week in terms of other obligations, because I would usually be shattered. That still sometimes happens if I go too hard!

Finally, I ended up on a similar dose of steroids for around 12 months too. They caused osteopaenia in my spine (at age 39), which was actually how I convinced the rheumatologist we needed to try the biologics and see if we could move me off them. I’ve got to be honest with you, the tapering process is really hard. But they are not good drugs to be on long term, they really aren’t. And they do not change the course of the disease, so the sooner you can get a DMARD that will help enough to get off them, the better.

Okay, I’ve rambled enough for now! Hope you find lots of useful stuff here :slight_smile: :slight_smile:

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Welcome from Canada @ruralgal! You have found a good place to ask questions, listen to those who have journeyed this disease for many years and go ahead and rant if it feels good! There are a few gifted ranters here but I will let you discover them for yourself.
I was first treated for PMR when my body turned on me at 58 years of age. I was surprised at the low dose that you were prescribed for PMR…I think it is more typical to be much higher. I was given a 10 day dose of 60 mg and felt like a super hero. Never had so much energy. But the pain free state didn’t last very long and I was worse the second time around. After being on and off of steroids, I had a real difficult time kicking them. It was like 1/2 mg decrease sent me into roaring pain. It is helpful if you can find pain relief that bridges the waiting period for DMARDS to work…or not work. My go to has been Celebrex and 1000mg tylenol with a cup of strong coffee. This is a very weird disease but with time, it doesn’t have to own you. Get sleep as often as you can, know your body well and find something to “busy” yourself beyond PsA. Distractions are helpful…especially productive ones. I wouldn’t try to “tough it out” if any of the Dmards are making you miserable…tell your doctor and get something that works. Are you taking Folic Acid? I was originally on 1 mg/day but it was upped to 5mg /day except on MTX day. Just ask away if you have questions, no question is silly…you will find honest, caring folks on this forum. Peace!


Hello and welcome too.

I’m in the UK so under a similar type medical system as Australia as in there are hoops to always get through med wise.

I’m a lucky PsA patient because it all hit me suddenly aged 54 (I also had severe psoriasis as a teenager but it had disappeared) and I presently classically with swollen digits and overwhelming fatigue. That was nearly 5 years ago. So the diagnosis was never in doubt. I struggled initially with the thought of taking DMARDs but finally got my act together thanks to the people on here.

For around 50% of patients PsA doesn’t show up with inflammation markers which is why it’s called seronegative. Which is also why it can be so difficult to get a diagnosis. Basically due to the untectable inflammation you’re totally exhausted which is why any exercise is so incredibly difficult. Initially.

The whole steroid thing is a nightmare frankly. Every time you decrease the dose - the pain levels surge but you’ve got to remember that most of that pain surge then is virtually false - it’s simply an over reaction to the lowering of the dose. It passes and eases in a couple of weeks or tends to.

Like @Jen75 an initial over reliance on steroids gave me osteopenia which sadly can send me down the route of fracturing things for no good reason. I’ve had a fractured pelvis, fractured lumbar vertebrae and a fractured wing tip of my pelvis this far. I’m on osteoporosis meds despite my bone densisty issues whilst showing osteopenia are of a score where no treatment is indicated. So please for your sake be very wary of steroids.

Now for bad news and some good news. PsA tends never to go away, is chronic and is due to your immune system now being classed as insane. But it can be managed. I’m on my 5th med now and 3rd biologic. I couldn’t hack mxt whatsoever so that was ditched very rapidly. I had a great relatively good run with sulfasalazine until my disease progression overtook its usefulness. Enbrel (or rather a biosimilar to it) didn’t really work despite being on it 11 months. Humira (again a biosimilar) hated me so I only lasted on that for 8 weeks. And finally I started Cosentyx which has been like a dream come true for the last year. Finally I’m more like me again, with some limitations but certainly more like me.

I work full time too mainly from home and of course now with Covid definitely from home. I’ve gone from standing in a field throwing a ball for me dog to walking him pretty much daily. I tell my rheumy the baseline for a med working is how far I can walk my dog. I’m happy with around 3 or miles tops.

It sadly does seem to take time to find a med that works and indeed for that med to actually get going too. You do end up initially living your life in 12 week batches just waiting for things to kick in. Pacing is essential. Really essential and incredibly tedious.

Howeer I do know people who have been able to get back into cycling long distances like London to Berlin etc and get back to proper running so it’s always possible. But you need to pace things always.

A decent resource although it’s a UK website is the PAPAA one. It helps hang things together better.

The best thing I did was research this disease and get to understand it. For me not understanding things is like a form of torture. We’re incredibly lucky that we have so many different meds to try now with new ones being brought out all the time. So you will find something that works for you. It does however mostly take some time to get there. It’s a disease also that can wax and wane but sadly never goes too far away either.

I really hope the leflunomide loves you and works well for you. It has worked extremely well for loads of people.

So keep asking questions as initially that’s all you have - a enormous number of questions!

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Hi Ruralgal,

you’ve had great, detailed responses so I’ll just focus on the main thing that jumped out at me when I read your whole profile.

I too used to enjoy playing tennis but unfortunately it’s no longer an option for me. I’m not saying this will be the same for you, I hope you can find a way to continue.

Some years before my PsA diagnosis I started getting sudden pain in my right elbow when playing tennis - bad enough to make it game over. The pain and tenderness would last for some time afterwards so I assumed it was ‘tennis elbow’ (genius eh?). I carried on playing squash, the lighter rackets and tiny ball seemed to bode well. But then my Achilles tendons started to protest - very loudly and painfully. Docs at A&E thought I had torn the right one, but again it turned out to be ‘just’ a very painful strain of some sort.

A few years later matters deteriorated considerably and I was diagnosed with PsA. I started piecing the puzzle together. For me, very swollen joints were one of the main things that clinched the diagnosis. But there’s more to the disease. There’s also enthesitis - inflammation of the points at which tendons attach to muscle. Typically, this causes problems with Achilles tendons and elbows. And although this is not the main symptom I have, it is an ongoing one. I hear that for some people, enthesitis is the main feature of their PsA and wonder if this is how it is for you.

So just batting this over the net - ask your doc about enthesitis.

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Hi Ruralgal, I am also a Aussie old gal who lives out of town on a few acres. Welcome. The information you have have already received is as good as you will find.
This is what helped me. I have a very good GP and a very good Rhuemy who communicate with one another on my behalf. He will listen to what is happening to my body and not just only consider my blood test results. I found the best form of exercise for me was going in a swimming pool. I did do laps when I could. I saw a physio therapist who worked at a re-hab pool and was shown what exercises to do in the water. Walking and exercising in the water helps and allowing your body to hang on a noodle is good for the spine. The pool was heated in the cooler weather and that helped. My Rhuemy put me on steroids hoping that this would tie me over until the new meds kicked in. I felt 15 years younger and it felt like I didn’t have PsA, but now I am off them. Now I am struggling to walk a short distance every joint in my body hurts and I get so tied. My inflammatory markers are good right now. I also have Ross River Fever as well which I think only happens in Australia. I thought I was having a bad flare. Just as well I have a good GP who looks beyond what I might think. Protect yourself against mozzie bites if you live or travel in areas that are prone to Ross River Fever. We are all different even though there are similarities with having PsA. What I have learned to do is pace myself and do what I can when I can and not push myself too often. A day out can take 2 or 3 days for me to recover. I had to learn to listen to my body and understand what the consequences of my actions would be, that way I can to avoid some of the pain and tiredness in the days ahead. Sometimes I decide that I am going to do it because I want to and I am willing to suffer the consequences for a day or two or three just so I can enjoy some things in life that I want to participate in. Acceptance was another big hurdle and one that I still battle with. Accepting that my life has changed because of PsA. What helped me was to take on different hobbies, like painting art, crafts, making jewellery and many other things that I may not have done if I didn’t have restrictions with my body. I hope this gives you somethings to think about and helps in some small way

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Hello Jen 75, It is nice to hear from someone in Australia. Thanks for all the helpful info. I really find it disheartening when walking, pool exercises and a bit of stationery cycling is all the exercise I can do at the moment. My physio is really good trying to hold me back but I have lost so much muscle mass I really want to push on.
The leflunomide has started giving me mouth ulcers and huge blisters in my mouth. Hopefully this is a short term problem. Living rurally I can see injections of biologics being an issue regarding getting scripts delivered on time if what I have read from others on other forums is a regular issue.
I am blessed to have somewhat minor pain and skin issues compared to many others out there. Hopefully all will resume back to some normality soon.

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Thank you for warm welcome Amos. Thanks for your advice. my GP does not like me taking celebrex due to my high blood pressure which is mostly under control but occasionally I do take it for osteoarthritis in my knee. It works really well. I do take ibuprofen regularly ( I am take it with food in the morning and late at night away from the prednisone) which is great for the mild pain but when I am due for the prednisone my pain levels escalate and I just have to wait for it to take effect.
I have started taking folic acid again as I have just started to get mouth ulcers and blisters from the leflunomide. Hoping this will help like it was supposed to when I was taking methotrexate.
I have been really lucky to find a nurse at my skin cancer clinic who has severe psoriasis and PsA and has been on a couple of biologics. She has a wealth of experience with them and has told me to reach out if I need someone to talk to if I end up going down that path.
As for distractions my kids keep me on the go. Luckily they are high school age and older. I have found that I have my brain back on leflunomide and I am going to start sewing again just to change my focus and get that distraction you have spoken about. Many thanks.

Hi there Poo_Therapy. I must admit I thought this was going to be a relatively easy journey finding a medication and thought that it would be the one for life. I now know after reading many recounts of fellow PsA sufferers’ journeys that that isn’t the reality.
Tapering down the prednisone is definitely something I struggle with especially when working. I have to work out which days are the most strenuous and then calculate the weekend in to it so I can reduce some of the pain from the reduction. I had a little bit of osteopenia before starting prednisone due to osteoarthritis in one knee but hopefully it has been stopped in it’s tracks with the addition of caltrate to my list of medications.
I really haven’t got the knack for pacing myself yet. I have so much to do at the moment not only with my medical appointments but I have one child on crutches and we are about to start the round of specialist and surgical appointments to add to the physiotherapy appointments we both have. Thankfully they are only located close by not like my rheumatology appointments.
Thank you for leading me to PAPAA website. It has lots of info.

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Welcome to this website @ruralgal, it made all the difference to my wellbeing and sanity finding a group of supportive peers aware of what we are going through and with a host of advice. Finally got my diagnosis at 55, and it gradually got me back on my feet from a wheel chair and crutches, a complete miracle. My initial treatments included a couple years of cortisone , which paired with a year of cortisone for cancer treatment in 2004 and off and on my whole life with asthma was probably responsible for osteopenia and a fracture of the femur at hip level from a fall on the ground, and current back pain not allowing me to sit properly, but gradually treatment with methotrexate and after a year or so also Cosentyx allowed me to feel well enough once again to walk for long distances across town and lead a normal working life. Treatment takes time initially as medication is tested on our bodies but after a time results are definitely impressive. There is a lot of information on website archive with in depth explanations on many issues we have , as well as reports on different medications and alternative therapies which can be used to help alongside with traditional medication.
Thanks again to everyone in the group, take care and don t hesitate to ask everyone anything. All the best

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Welcome! I am going to be interested in how your exercise program goes. Over the last 4 years, I have deteriorated to not being able to walk much at all. I have been working from home since March and now realize just the short walk I made from my car to the office was some exercise. You said you walk 200m. If I tried that, it would put me in bed and on pain pills for a week.

I know i have to do some exercise. I do a little (very little) work outside occasionally. I am slowly working on getting an antenna up for my HAM radio. I pay for it every time I work for an hour or so. My back is now to the point I cant stand and bend over for very long. I know it is because my back muscles are gone and my stomach muscles have turned into the COVID 15!

I need to lose about 40 pounds, but how if you can’t exercise?

I sit around and eat too much while I work from home. I have to cut back on that.

Now that winter is here, it is very hard for me to get outside and walk any. I have a treadmill I haven’t used in 5 years, I h=guess I need to start on it

Good luck with your exercise and keep us updated…

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Sounds like you are still doing quite a bit of exercise in the context of active PsA, and that is great. I know how disheartening it can be, just remember that the vast majority of people do eventually get a good response (even if it is not like those ridiculous ads @tamac was talking about), once they find a med that works for them.

Make sure you let your doc know about the mouth ulcers. I know that’s a thing with methotrexate but can’t remember Leflunomide, for methotrexate we use 5mg folic acid every day, except the day methotrexate is taken.

I’m not sure how rural you are (though I’m guessing if you play social tennis there’s a small town within a couple of hours?). I’d raise those issues about the biologics with your Rheumy if/when they get prescribed- whilst in Aus we usually only get them monthly, it would make sense for them to send them to your closest pharmacy a whole script at a time (so I think that’s 12 weeks worth for the first evaluation period, then 24 weeks if it works and you continue). Only if you’ve got reliable refrigeration though!

Alternatively you might decide it is easier for you to try an infusion-type medication that you got to the hospital every 6 weeks or so to get, like Remicade. There are options and I’m sure you’ll find a solution that works. I’m not rural, but I’m always surprised by how quickly mine arrive, once I fill the script.
Getting the script used to be a hilarious process where the Rheumy had to hand-fill a special form, post it to a PO Box in Tasmania, and wait for a handwritten script with special stamp to be sent back to the Rheumy, who would then post it to me. Things weren’t working well when AusPost changed their standard postage times (remember - from a couple of days intercity to about ten!), and the Rheumy and script writing people in Tasmania continued on with their old processes. A few late doses there! They have finally gone electronic communicating with each other now, and Tasmania had started sending scripts to me directly earlier in the year, so they seem to finally be back on top of it (though nowadays I get mine through the hospital, so not sure how the last 6 months has been).

Let us know how you go :grinning:

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Hi Jen75. I live near a small village with a population of about 200 people but a larger town of about 25000 is only 30 minutes away. We get lots of blackouts during the summer time. Thanks for the information on biologics. If I go down that path I was worried about how to get them as our mail can sometimes take up to 2 weeks to get to me when it comes from within the local area but Sydney mail takes less than 7 days.
I ended up at the doctors because of the blisters but it wasn’t my regular GP so he was of no help at all offering no advice just saying they were healing even though when I rinse my mouth you can see the water isn’t clear and I can taste blood in my mouth. I have a phone consult this week with my regular GP and will see what he has to say. I have started back onto folic acid and also berocca which seems to be preventing the ulcers and blisters but not the inflamed mouth.
At least I can say it is a whole lot better than when on the methotrexate and I will probably stick with leflunomide. I can now raise my arms above my head for the first time in over 6 months pain free. I even (without thinking of the consequences) filled in for a game of tennis last week and played quite well. I have discovered I haven’t lost any power in my hits. Luckily it rained for about an hour so that cooled my body down- and my team mates new I couldn’t sprint around the court. I did take an extra dose of ibuprofen and double the usual celebrex but felt pretty good the next day ( good enough to say I would fill in for a few games next year). I miss it so much.

Hi tamac. Thanks for the welcome. It is definitely hard to exercise when you are in pain and your joints don’t want to move. I find a bit of walking in the pool is the best thing I can do when things aren’t going so well. It lightens the load on my body. I am waiting for my rheumatologist to talk to me about my weight at my next appointment. I need to lose more than 40 pounds and now that the leflunomide appears to be working it might be able to happen.
It is summer here at the moment so the heat is keeping me inside a bit and so I am walking up an down my hallway which is very boring.
I am lucky that COVID has not hit my area so I have been able to go to work throughout the outbreaks in Australia otherwise I would be unemployed. Working from home would have increased my waistline as I enjoy a cooked lunch and I the munchies take hold.
I hope things get better for you and your health improves.

Well done you! Pushing past the boredom threshold - not everyone manages that, but it can make a difference. Wish I’d done the utterly tedious exercises I was told to do initially. When you’re used to being very active they are mind-numbing. I ended up with muscle wasting from inactivity, which in turn probably helped PsA to damage some joints.

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Hi Sybil-Yes it gets very monotonous but I know my physiotherapist has knows best so do not overstep what he says is what my body can handle. I really want to do a lot more but at the moment can’t do resistance and very little weights so just accept being mobile is enough for the short term. I am looking forward to being active again.

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